T.B.I. To Be Invisible

I lost my hat today.

2012-01-24T15:20:00.000-05:00

Dear Lady Who Works at The Housing Works Thrift Store on Broadway between 96th and 97th Street,

I am very glad I am not you. Even though I am the one with the brain injury and I am the one with the lost hat, I would rather be me than you. Do you want to know why? Probably not, but I am going to write about it anyway.

I dropped off a big bag of clothes with you today. Because you said you do not take certain items, I sat down and sorted through my bag before dropping it off. I started sweating so I took off my hat and stuffed it in my pocket. Or so I thought. When I left I asked you if you wanted me to put everything back in the bag and you said no that you would do it. That was nice of you.

What was not nice was the way you treated me when I came back to see if you had found my hat. I had already asked the very nice people at the Salvation Army Thrift Store on 96th Street between Broadway and West End Avenue if they had seen it. Because you did not accept certain items, I dropped the rest of my stuff there. The ladies at the Salvation Army took the time to look for it with me. They took the time to listen to my description and even asked questions for clarity. It was a light gray bonnet with a brim and a dusty rose ribbon with a bow. It was not knit or stretchy and it had a cashmere lining sewn it to make it soft. They offered to take my number in case it showed up. When I left there, I honestly felt like if I had left it there and somebody took it, I would be happy for that person. I was fairly certain that I had lost it in your store though.

You were not at the counter so I explained the situation to "the assistant manager" who was at the donation counter. His response was that all of the clothes had been processed already and when I asked what that meant, he said "Put into bags." When he told me that you and he were the ones who processed all the clothes, I was pretty sure you would remember seeing it if you had picked up all my stuff. He agreed to go ask you and ran upstairs. It could not have been more than 5 seconds and he was back. I was worried that he had not described the hat to you so I said, "There is no way you could have explained the situation that quickly. What did you ask her?" "I asked her if she saw a hat."

You came down the stairs then and I thought, "Oh, good. She will remember me and help me." No! Instead, you made a point of making sure I could not finish a single sentence. Every time I started to speak you cut me off and said, "Ma'am, let me explain something to you..." I did not get to describe it because you cut me off and saying I should not have interrupted your lunch. I also should not have questioned the assistant manager's description because he had explained the whole situation in detail. I was not allowed to clarify the situation because as you said he came upstairs and asked you if you had seen a "BLACK" hat. You made it very clear to me that you were not going to waste any of your time listening or helping me. You did not allow me to finish my sentence about how I had taken it off in the store because I was hot when I was unpacking the clothes but cut me off and said I dropped it in the street. When I tried to explain that I had sewed the hat, you said, "Everybody feels that their stuff is special." I was choking back tears when I left.

I am glad I am not you because I would not make someone feel bad if they needed help and thought that I was the only one who could help them. I actually try to help people so if somebody actually asked me, I would. I am glad I am not you because I do not LIE to cover up for the fact that my employee did not actually describe anything and then I do not chastise people for wanting to be heard. Unlike you, I am not only nice when people are giving me something and then nasty when they are asking for something. I am also glad I am not you because you seem like you recently graduated from some elite four year liberal arts college and moved to "the big city" to pursue an exciting career. I feel bad for you because the economy sucks so you are sorting used clothes and slumming it on the upper westside. I am glad I am not you because the highlight of my day is not the 30 minutes of uninterrupted time I get to take my lunch break and stuff my fat face with take-out. I also feel pretty good because I would never tell someone who lost something she made with her own hands, that everyone's stuff is special to them. Especially if I worked in a THRIFT store where every single item in the store was donated by its owner. I most am grateful that I am me and not you because I have better things to laugh at than the back of a teary brain-injured lady who just wanted to be understood.

starting again

2012-01-16T00:19:00.001-05:00

I have been trying to complete a post for weeks. Different reasons came up for not finishing but the need to write pulls from some place. I feel connected to life but still so alienated. I sometimes think having a brain injury is like being buried in Stephen King's Pet Sematary. For anyone who may read this who has not read the book, I will give a brief synopsis. There is this burial ground and kids start burying their dead pets there. A few day later the pet wanders home, alive but not the same. The cat or dog is altered in some weird way. The longer the pet was dead before being buried there, the stranger is the new personality. Not just strange but malevolent in a way.

I think it is part of what makes me feel invisible. I feel like a ghost walking the earth. I came out of surgery altered and scary. It is like I am not supposed to be back. Everyone who loved me was so grateful that I made it through. Only gradually did the changes become apparent. I knew something was wrong in my head, with my thinking, but I was unaware of what others were seeing. It was baffling to me that I pushed my family to the limits without even realizing we were close to that point. It is like a mistake that I survived. I came back a different person.

When I think about the people who still love me, who do their best to try to understand what it means to have a brain injury. I want to cry. I am so grateful for their patience. My daughter, my husband, my mother, my last couple of remaining friends. I do not feel worthy. I cannot be sure why they bother. I do not say that because I am so down on myself but because of the overwhelming evidence that I should be.

I worked hard at being a good person. I was determined to be different from my father. I consciously endeavor to be generous and thoughtful. I suppose I can not make up for the times when depression took over and sucked me into a vortex of solitude and fear. Without consistency, I imagine friendships do not seem reciprocated.

Leaving school the way I did was devastating. Someone remarked recently that my abrupt departure from my job was like a boyfriend breaking up with me. That comparison has lifts the burden of anger from me occasionally. I know the feelings of betrayal will pass. The questions are the same as the ones I asked at the end of a relationship. I loved him so much. What happened to the promises that he would love me forever? What did I do wrong? How could he hurt me so much after everything I gave? Why doesn't he want me anymore? What is wrong with me that he does not want me anymore? And there is burning desire that he should be suffering as much as I. How could he just go on without me? What does she have that I don't?

The part that is so hard for me is that I never had this kind of break up with a boyfriend. I was the one to end things and I rarely had regrets. The one relationship that I obsessed over was one that I was forced to end because I knew I would never get what I wanted from it. Even then, when I left he still called and told me how much he loved me. It broke my heart that he could be so cruel as to tell me how wonderful I was while not being able to commit.

But school, leaving my job was so different. It really makes my question myself as a human being. I hate to even admit how hurt I was, I am, by the words that were said to me, written about me, written to me. My assistant's final email to me spelled out specifically the details of what a horrible person I am. He closed by advising me I should worship my husband as a saint, presumably for putting up with me. (I do adore and worship Brian and I battle to quell the fear that he is only tolerating me. This article from the Times was so accurate: When Injuries to the Brain Tear at Hearts) If I listen to what people say to me now, I am the rudest, meanest, most inconsiderate person. Yes. people have said that to me. "I have never been treated so poorly in my whole life." You can see why this might bother me, especially after I thought I was trying so hard to be nice.

I have been told to stay positive and I feel some obligation to be that person who overcomes adversity, emerges victorious after great obstacles. That is what people want to read. I personally hate that crap. When I read these memoirs of people with brain injury who experience bliss or made a miraculous recovery because of the great sacrifice of hordes of loving supportive people, I don't believe them.

I am not writing this to solicit words of support from those around me or from the brain injury community who really does understand. I am writing because this is how I feel right now and I want to express it. I know I am loved and I love all of you. I just don't understand the hate. If I could dismiss it as insignificant expressions of people who don't matter, I gladly would. These were people whose opinions I valued.

Who am I? What did I become when I woke up against the odds? Maybe I was not supposed to make it. By clawing my way out of the dirt, I no longer belong. I am forever altered.

Merry Christmas to all!

2011-12-23T14:08:00.000-05:00

I am LOVE this Santa I made. Isn't he cute? It's a bit strange that what feels like an expression of happiness inside of me, my smile, turns down at the ends. At least, my eyes are smiling.

Three years ago I got the idea to sell ugly Christmas sweaters. I labored for a year, felting, sewing, gluing, altering an abundance of sweaters. Every time I saw a red sweater or a Christmas-y sweater in a thrift store, I snatched it up. I thought I had hit on a great prospect for making loads of cash since I predicted that this would be a new trend. It would go viral #uglychristmassweater as they say on Twitter. I worked way too hard on every detail forgetting the big picture. By the time I was done, my sweaters were a little too precious. I did not really want to part with them for the measly sum folks expected to pay for a once a year joke purchase. I sold 2 on Etsy for half the price I wanted and about 8 of them for a quarter of the price. That was it. I was done. Or maybe my efforts to keep teaching got in the way. I did used to be able to do it all: make crafts, raise a daughter, make dinner every day, decorate for holidays in the style of a trained Martha Stewart soldier all while becoming an amazing math teacher. I stopped altering and selling sweaters and forgot about my brief foray in business.

And now look! NPR reports on a woman who expects to sell 2,000 sweaters this year: Ugly Christmas Sweaters Turn A Pretty Penny

I am tempted to draw some sweeping conclusion about myself or contemporary American society or the state of the capitalist economy from this experience. I expect a big pay-off to come from my efforts and dedication. I am a dedicated and work hard with every endeavor I undertake. The appreciation and reward does not match what I feel I put in. As a result, I begin to conclude that the way to go is an easier path. Put in less so I will expect less. Or, concentrate on quantity instead of quality. I should have focused my efforts on cheaper production costs, less time invested, and appealing to the masses. I have some appreciation for successful entrepreneurs but I know way too many people who put in the minimum because it's good enough. To do that, you must have to stop thinking. You probably lack self-awareness. Who would want to see that sort of laziness or indifference in himself?

Let's outsource the work to another country with a cheaper work force. Let's dole out sub-prime loans to make more money for now. Let's put a credit card for in the hands of every college student who is already buried in student loans.

Not me!
Not I!
No sir!
Not me!So there!

I am not going to stop working as hard as I can. I do what I do because I love doing it. I do it because I have to. I do it because it makes me feel good about myself and if I didn't, I would be disappointed in myself. I am renewing my effort to put it out there and forget about the results. I am going to try not to care what I get in return.

So, like they say, F%¢k 'em if they can't take a joke.

And by "they," I mean America's Nielsen family. (A quote from one of my favorite underachievers, Adam Scho----ld.

HAVE A WONDERFUL HOLIDAY!

Why you wanna go some place you don't fit?

2011-12-17T01:30:00.002-05:00

That is a good question. A better question is: Where do I fit?

I got on the #1 train heading uptown and, no surprise, the two men in the doorway barely moved to let anyone on. I entered on the right and the kid standing in front of me had his hand up holding the pole so I could not move further onto the train.

"Excuse me," I asked.
"Where you want to go?" He is looking at me and stubbornly maintaining his grip in the pole blocking my way.
"I want to get on the train."
"You on the train. You happy?"

The man on the left steps aside, encouraging me to move in that way. But, that direction was toward the center of the train where surely I would have been in the way, with no place to hold on.

I went into BIM and I refused and told the kid I wanted to go to the space behind him.

"How you gonna get there?" he challenged me.
"You are going to move your arm and let me pass," I declared with certainty.
"You got room right here. Why you wanna go someplace you don't fit?"

That was it. I hate that people are so rude. Why do they stand in the doorway when there is space behind them. They are not even getting off soon. There is no reason.

I pushed past him and when I was in the large open space I declared (maybe shouted), "I DON'T FIT? I DON'T FIT? LOOK, I CAN WAVE MY ARMS AROUND!" And I did. I had lots of room and I was waving my arms around to prove it.

But, did I fit? I had no sense of the other people around me. No one was looking at me. It was a 20 second altercation, over as quickly as it started. And there I was happy to be standing in an open place where I could put my bag down. Was there really enough space there before I pushed my way on? I don't know because I did not take the time to assess the situation or consider the appropriate thing to do. I doubt anyone was happy that I was there. My place on the train? My place at my job? My place in the world? Why I wanna be someplace I do not fit?

I may have been a square peg in a round hole before my surgery but now I am a loud, squeaky awkward peg determined to insert myself somewhere. It doesn't feel that way when it is happening. It feels normal. It feels like what anyone would do, until I hear myself shouting and see myself waving my arms around and I remember that this is not normal behavior. Fortunately, I did not feel too bad afterwards. There are times when this happens that I feel so angry and upset that other people don't understand me. I berate myself for acting so inappropriately. Today, I didn't care so much. Who saw me? Who felt embarrassed for me? I don't care.

I imagine other people took it in stride. Another day in New York. Another wacky subway fight. I just hope I do not end up on YouTube.

Contributing member of society

2011-12-03T13:24:00.001-05:00

A woman I met who used to be a teacher and had to stop work because of a brain injury asked what gave me a sense of identity now? what made me feel like a contributing member of society?

This was my response:
I still sometimes think I was an awesome teacher even after injury. I left kicking and screaming. It is only after I saw the relief on the faces of my husband and family that I realized how much I was spinning my wheels. I could stay in my classroom working until 8 or 9 at night (no sense of time anymore), then take work home, and still accomplish nothing. I was lucky I could think on my feet and that the kids liked me but I could not plan lessons, have the correct materials and papers ready before class, or work with my colleagues. I thought my boss, my co-workers, and my assistant were plotting to drive me crazy with their accusations of my misdeeds. I still wake up in the middle of the night kicking or yelling in anger.

I am working hard to let go, just for my own sake. Being on disability and working on just being, feels pretty good right now. As far as identity, that is why I fought so hard to keep teaching. It defined me and it was what made me the happiest. I could not imagine losing that. After 22 years, I was confident in my abilities. I loved the consistency of the school year, a new start every fall.

Slowly, I have begun to realize how much I needed to be needed. I loved the satisfaction of seeing my students grow and learn, the appreciation, the praise, and the positive feedback from the parents.

Someone gave me some excellent advice recently. She said, "Your career is like a boyfriend who broke up with you. You keep trying to figure out why he doesn't love you anymore, what you did wrong, and who you are without him." That analogy has given me such a feeling of relief. I am still someone without that external association.

Am I a contributing member of society anymore? Those are just words.

My value, YOUR value does not come from a job! Sure, I have MANY days that I never get dressed or move from in front of the TV. I am working on building a routine, exercising, and taking better care of myself. I am here and I matter to a small number of people, my husband, my 25 year old daughter, and my mother. Working to be well matters to them. It is very important to just a few and that is enough for now. Screw society!

Cavernous angioma MRI pics

2011-12-03T12:38:00.001-05:00

I don't think I ever posted these. Can you imagine seeing that in your head? WTF!

I am grateful today.

2011-11-30T21:54:00.001-05:00

Last night I went to a new brain injury support group. I liked the people and there was pizza. The leader does not have a brain injury so there is actually some kind of order. The last time I sat down to post on my blog I was very upset. I had been asked not to return to my previous support group. The leader did not think the group was "a good fit" for me. I think she just does not like me. I can understand it. She reminds me of all the brain injured traits that I display. When she talks I hear myself and it is disconcerting. I talk too loud or too much. I ramble or elaborate excessively out of fear that I am not being clear. So, I was asked to leave the group because I was being too brain-injuryish?
In the new group nobody talks too much. People listen and respond. There are enough people so you get a balance of responses. The dogmatic are tempered by veterans with more balanced views. And, best of all, there is humor. I laughed hard a few times. I feel pretty good about that.

Cerebellar Cognitive Affective Syndrome

2011-11-07T09:49:00.000-05:00

I read an article this weekend about CCAS, the brain injury type that is the cause of my disability. This excerpt was of particular interest. I wonder if anyone else thinks this sounds a little bit like me. Hmm...

"Followingthe uneventful surgery for resection of the benign mass, she was noted to have a marked personality change, becoming disinhibited, disrespectful, andchildlike. Testing using the simple tools ofbehavioral neurology revealed impairments in working memory, perseveration, distractibility, and lack of mental flexibility. She also showed deficits on visual spatial performance.

Over thenext few months her mother recounted that the patient would report inability to make a sandwich—not knowing what to do first, and inwhat order. With time she improved many of her abilities,but executive functions remained impaired, and the next twodecades have revealed a pattern of personal choices,psychosocial interactions and judgment that have lefther requiring regular family intervention to provide support and safety.

Thiscombination of mood and personality changeswith the cognitive impairments that could bedemonstrated on neuropsychological testing were the first indicators of thepersistent pattern of executive, visual spatial, linguistic,and affective impairments in the remaining 19 patients that westudied prospectively over the next 6 years, and which we identified and named the CCAS."

I might have been able make a sandwich but I could not pack a bag. My first day back at school in August 2007, I was reduced to tears because I could not figure out what to do to set up my classroom. I sat crumpled on the floor crying and confused. I thought I was just tired. It wasn't until spring break that year when I tried to pack for a vacation to Cancun that I started to see a pattern. I was up all night and in the morning, I could barely close my suitcase. When we got there I found I had no t-shirts, no toothbrush, and no underwear. I did have a number of empty cosmetic cases and ziplock baggies. I also had more books and crafts than I could possibly use on a week long trip. Nothing like this had ever happened to me. Doctors still said I was probably depressed or distracted because of the brain surgery 11 months earlier. I knew "depression" was not the cause but I did not no where to turn.

What a long and bumpy road it has been to get here but here I am. For now, I remain optimistic about what may be ahead.

Oh BTW I can make a taco, at least a taco costume. Here is Tess dressed as a taco for Halloween:

Lily was a mummy.

Aren't they so cute? I love my girls!

My best girl was Rock Lobster:

Memories of last year

2011-10-13T07:20:00.001-04:00

Yesterday was my mom's birthday. That means last year around this time I went out with my family to celebrate and my daughter brought her boyfriend. I don't remember the dinner. I sort of remember the walk home because for some reason we were discussing Sherri Lewis's puppet, Lambchop, and imagining her as a zombie. The next day I posted an altered picture I created on Photoshop of Lambchop with blood running down her mouth (mutton chops?) and with a brain in her hand.

My sister found it disturbing. My situation at work was deteriorating. My chances of a fresh start with the new principal seemed doomed. I was losing a sense of purpose, a feeling of having any significance, and any remote chances of belonging. I began losing control of myself. I was so sad. I felt misunderstood. After fighting for three years to do what I had done so well for the 18 years before my surgery, I wanted to give up. I hated myself for admitting defeat.

In the New York Times last week, there was an opinion piece called Starting Again After Brain Injury. The author writes:

I broke my leg last year, and it took me and my physical therapist a week to realize it, because my broken leg was unremarkable compared to my chronic neuropathic pain. Then, it was spooky how much more attention my cast and crutches elicited from both strangers and doctors than my broken brain does, even though my invisible cerebral disabilities cause more pain.

It is no wonder suicide remains a significant cause of death among people with a traumatic brain injury diagnosis. My speech language pathologist tells me I am a “survivor.” I tell him I do not feel like a survivor, I feel like someone who is still fighting for her life. I am afraid of what will happen to me. I don’t say that because I’m suicidal, but because I can’t keep living the way I am now.

I got sick, got sicker, and then ended up in the hospital. The plan was when I got out, I was supposed to "phone it in" at work. In other words, do as I am told at work without thinking, just show up and be of service. The day after agreeing to "the plan," I forgot what it was and felt complete panic. When reminded what we had discussed, it was alarming that I had completely forgotten what I had decided to do. Needless to say, I could not do it. The most disturbing part of this story is not my vocational demise, it is the recognition of one of the most puzzling aspects of my brain injury.

I never really heard the phrase "executive functions" before my brain injury. The ability to forward think or plan is an executive function. So remembering what I need to do before I leave the house has become a struggle. It is so hard to wrap my brain around the fact that there are functions of the brain so obvious that we take them for granted and yet so complicated that we can lose them.

What needs to be done today before I leave the house? The first things that come to mind are things that sometimes need to be done, like laundry. Does that need to be done today? Is that related to why I am leaving the house? No, but that is the type of thing that I feel secure doing because it seems practical and somehow, essential.

When it is actually time to leave is when the many tasks that needed to be done randomly and inconsistently occur to me. My fanny pack is always packed with phone, wallet, and keys so I have that piece covered. I have gone to the bank without the checks I need to deposit, the post office with the package I need to mail, and the pharmacy with the prescription I need to get filled. I have also left myself so little time that I am forced to leave the house without eating, showering, brushing my teeth, or dressing in appropriate clothes for the weather. None of that seems devastating by itself. Those things happen to everyone. What disturbs me is the fact that the part of my brain that is supposed to take care of that for me is damaged.

I am determined to implement systems (like my fanny pack) to make sure I do the necessary tasks and carry the important items with me, even though my brain does not remember how to plan. When I have to pack a suitcase for a place I have never been before, I am fortunate enough to have a loving husband who holds a checklist while I pack and does not let me stop until I am done.

I think I am going to be okay. I just have to remember tomorrow that I felt this way today.

The Dream Brain Injury Support Group

2011-10-04T14:04:00.003-04:00

If I was going to start a support group for people with brain injuries, this is what it might look like. Using the model of the Responsive Classroom, my goal would be to create a psychologically comfortable environment where everyone present feels significant, important, and included. We could start with a question or poll of the month posted on a board so everyone signs in when they arrive. For example: What was your biggest obstacle this month? or What did you do in the last week (or today since we have memory problems) that makes you feel most proud?

Name tags would ready and there would be some blanks for new people. There would be a growing face book poster or wall with first names and photos so everyone would have a fighting chance to remember each other's names. I would give everyone five minutes to say hello to each other and settle in before beginning the formal part of the meeting.

If we had a topic, I (or more likely a facilitator because I am not great with time, taking turns, or staying on topic) would ask the folks to turn to a partner and discuss. Then after a few minutes, each person would share what the other person said. That way we could all practice listening to each other and remembering what the other person said.

We would play games where everyone could participate. The games could help us build cognitive or social skills. Maybe someone would be "the expert of the month" and share a useful article, resource, or strategy she discovered. Maybe we could do some simple crafts.

We would work on problem solving skills to bring back home with us when we leave. We would learn relaxation techniques or simple stretches and practice them.

These are just some ideas I am playing around with right now. We have slim pickings her in New York City. I know it seems bizarre. Since we have such a huge population, you would think there would be more available. There are certainly enough folks out there with brain injuries.

How many TBIs does it take to start a support group?

How old are you now? How old are you now? I am 49 years old. I am 49 years old. I am 49 years old. I am 49 years old.

2011-09-28T06:05:00.001-04:00

Sung to the tune of Happy Birthday to You.

Last night Sachi and I went to the Moth story telling at The Bitter End on Bleeker Street. It was kind of surreal. We both got picked to tell stories. I was picked 2nd and Sachi 7th or 8th. I had not memorized my story so I am not sure how it sounded but I tried to think of the parts in categories in a sequence each section with three points to make. It worked out pretty well, I think. The part that got the most laughs was the part I ad-libbed. Weird. I was proud of my memory. And Sachi said it was good. The worst part was that while I was talking, I was so nervous that my mouth got so dry that it was distracting. My lips felt caught on my teeth and it felt like I had to talk with glue all over my tongue.

But I did it. And people liked my story. And they seemed happy for me.

Even better was Sachi's story. I think I was more nervous for her than I was for me. She had told me her story the night before and it was great. I am not sure why I felt nervous for her. She was AMAZING! It was BANANAS! First of all, she is so totally poised, confident, and put together. I am sure this does not come as any surprise to those who know her, but it was like I was seeing her objectively compared to all the other speakers. I am so proud of the young woman she is. She has integrity! She came in second! And, I did not come in last, not even second to last. Yippee!

My birthday was wonderful! My mom came by with two yummy desserts early in the day. Blueberry tart and passion fruit pannecotta. Brian and I ate them for dessert (not really dessert for me since dinner was a handful of almonds on the bus). I got birthday emails from my daughter and her boyfriend and my friend R. Very thoughtful and quite amusing, I must say. Sachi's was hilarious. My friend J. took me out for lunch so nice, salad Nicoise and 2 desserts, chocolate mousse and bread pudding. Brian came home from work and gave me presents. A protection necklace and two drawing books I have wanted. And best present of all, his forgiveness. (I won't go into detail but Friday night I had a bad brain injury moment, BBIM of the millennium!) Then my sis came by with adorable, very thoughtful gifts: a gorgeous wrap bracelet with pretty stones (not sure what kind, but my favorite color gray) and teeny, tiny skulls, a cool t-shirt with these graphic skulls that reminded me of Mexican Day of the Dead maybe, and these super cool tiny antiquey scissors. Not really scissors but I can't remember what she called them. My friend K.P. from college called me from Michigan where she is a doctor just to wish me Happy Birthday. Then one of my former students gave me a giant cupcake. I mean GIANT! I will probably bring it to the women's brain injury support group.

I fell asleep early in a blissful, sugar coma and woke up too early so I decided to finish my post. I definitely have to go to the gym today. It might have been one of the best birthdays I have ever had!

Happy Birthday to me!

2011-09-22T07:59:00.001-04:00

Yesterday, when I woke up my husband said, Happy Anniversary. I had forgotten. But, yes, 9 years ago we were married in a church in Harlem next to the Alexander Hamilton House. This morning when I woke up he asked me, What do you want for your birt'day? (Oh, just a husband with an adorable brogue.) No, that's not what I said. I said that I want to be surprised. Well, that did not go over so well. Groan, mumble, argh.

Every year I wind up feeling a little out out that people find it so hard to just buy or even make me something I will love that will surprise me. I have so many varied interests and a wacky but identifiable sense of style. How hard could it be? I take pride in being a good gift giver. When I see something I know someone will love, I buy it. These last couple of years that has not proven to be the best strategy since I forget that I bought them something or where I put it.

My birthday always seems to bring out this little, if I can do it, why can't they? sentiment. So, this morning, when he said, "Fine, I'll just get you jewelry," my internal pout signal went off. Then I brightened and asked if it would be a new engagement ring. (Yes, amongst the many TBI related things I lost this year -my mind, my job, my sense of self, 14 pounds - I also lost my engagement ring.) He is sure it will turn up. He kissed me goodbye and told me he loved me and left for work.

As I sat on the couch reading my blogs, the little loop started to play in my head. Why doesn't anyone put as much effort into... AND THEN... I stopped.

I suddenly realized that the best thing I could give the people I love was understanding and appreciation. They would probably prefer that to any of the "thoughtful" presents I come up with. I may be a good gift giver but there is plenty that I am not so good at and even more that I actually kind of suck at. But, I have people who love me anyway. The best present I can give my family and myself this year is acceptance. They love me, TBI and all. They have given me patience, support, forgiveness, and second chances. I think they just want me to be happy.

So here is my birthday wish list. I want more years together so that I can be here for you as much as you have been here for me. Next Tuesday I start the 50th year of my life. I have the best husband, best daughter, best adorable boyfriend of my daughter, and best mommy in the world. Could there really be anything better than that? No! That is pretty great. Maybe, something tasty from the Cupcake Cafe would nice... but that would just be icing on the cake.

2011-09-16T13:24:00.001-04:00

There is stuff I have to do. I am coming to terms with that. Being on disability so far has been about getting used to uncertainty. I can't say I am there yet but I am working on it. Leaving my job felt like I was losing my identity. Who am I if not a teacher? My TBI doc and super specialist on the subject, like well-known in the field and all, gave me some great words of wisdom this summer. I am working so hard to let go of the anger. I still have nightmares about the Witches of Westwick. I was telling Dr. S. how one person really could have made a difference and really helped me and she didn't.

He said, "The way you had to leave sucked. It was not nice and could have been handled differently. Leaving that place, on the other hand was the best thing for you. It was not good for you to be there. Anyone who tried to help you stay was not doing you any favors."

It is time to move on. What am I going to do? Well, for now I am remaining open to possibility. B. and I may move out of the country in a couple of years. We are definitely working on selling our apartment. I am exercising and have lost 14 pounds. I am doing my artwork. I am working very hard at my cognitive therapy so I can do more outside my apartment. I am taking an online class towards my degree. This is the hardest part. It is also the part about which I am the least certain. What if I can never teach again? Dr. S. does not think I can. Why am I working on my Master's degree then? It seems kind of pointless, but I do not want to close the door or give up. I am so stubborn. I guess I need an outsider to ask me what I am doing. Am I kidding myself? I sure did about teaching for four years.

I really wish people understood how incredibly deep inside my brain my surgery was. It was not on the surface. It was way down in my brain stem and pons and cerebellum. They cut off my ear and sawed a big piece if my skull off. They went in there past the temporal lobe and looked around. They could not even find it at first. Imagine if a peach was my brain. They cut off the skin, went past the flesh, and then started probing the pit. I know a lot of other people have brain surgery. Certainly at work there were three other people in the community that I knew of. Did they have cognitive changes? Not that anyone noticed. Did they need six months to recover? No way, one of them went to a public event a week after surgery. Did they lose their jobs and most of their friends? I don't know because I am not friends with anyone from there anymore but they hadn't last I knew.

This is what I need to let go of! Nobody, nobody, nobody, I worked with will ever understand! And I have to stop caring. It does not matter anymore. I am free and I am resting and I am feeling more at peace than I have in a very long time. The only people that matter to me DO understand or at least they are trying. I do not have anything to prove to anyone.

So I am working on using my time more wisely these days. I scheduled a big clean up yesterday and then I stopped and made art. Willfully and deliberately. I hate schedules! I need some discipline though or nothing will get done. Mental rigidity! That is what I am working on right now.

"Oh, you TBI!" (shakes fist in air)

It's Two O'Clock In the Morning

2011-09-05T02:12:00.000-04:00

and every sane person is asleep. Not, this guy. Something is keeping me up. I have not been exercising or sticking to my diet so I feel bad. I was doing so well.

Still, good stuff has been happening... until I posted my biography on the online discussion board for my Creativity class. Everyone else did a power point presentation. With like seven pages. Just exactly the way the professor modeled it for us. I thought that was just for the professor. So, I did a one page cartoon with mini captions about myself. Everyone commented on everyone else's bio except for mine. Only the prof commented and he said, "I admire your courage."

What courage? This is just my life. Does it take courage to live? I guess so but what is the alternative? I mean, I guess if I had done my own brain surgery like Tom Hanks did his own tooth extraction in Castaway, that might have taken courage. I just succumbed to the anesthesia and was operated on. Was sticking to a job I could not do in a place where I was not wanted a sign of courage? No, it was an act based on denial and fear. I believed I could still do it and I was afraid of life without it. Is taking the class a sign of courage? No, I just am not sure what I am doing anymore and since I am still officially enrolled in the Master's program, I am taking a class. Was posting a weird bio even after noticing everyone else was doing PowerPoint presentations a sign of courage? No, I thought it was creative and I thought that was the point of the class. Even in an online class where I do not have to see people face-to-face, I have managed to alienate myself. Almost everyone else is working toward a PhD. It may be very different from what I was expecting. It makes me sad I did not take this course with my classmates this summer. Two people said they missed me, but nobody called or wrote.

Welcome to my Pity Party. I think I need to examine my thinking for cognitive distortions. This type of self-deprecation isn't no good for me. I do not want to be like the guy on the subway today. I asked him if he could move over a little so I could sit down. He looked at the space to his side and said, "You can sit if you want to but I ain't moving nowhere for nobody." No, that's not me. I am moving forward for all the people who love me and for myself. That does not take courage. It takes hard work and appreciation for all that I have. And anyone who thinks otherwise can go suck it.

My latest BIM

2011-08-27T09:14:00.000-04:00

I was so proud of myself yesterday because I actually cooked my own dinner. I made a frittata with spinach and cheese. I know how easy it is for me to forget what I am doing so I set a timer. Unfortunately, when the timer went off I went to the kitchen to find the pan filled with raw egg and cold spinach sitting on top of the stove. I forgot to PUT IT IN the oven.

Taking it in stride, laughing at myself, at least today.

Back from vacation!

2011-08-15T10:51:00.000-04:00

I wish I could say my mind was rested. My body is. I exercised. I stuck to my diet, at least until the last two days. I read a lot. I got along great with my SO. But, I had nightmares. Kicking, screaming, crying in my sleep nightmares. I told everyone we met that I was a retired teacher. That was so much easier than saying a teacher on disability. I would not know how to begin to explain to a stranger that I was on disability. I know I do not have to explain but I am basically lying. Why would I retire? I loved my job. I still wish I could do it. I have to begin to accept that I cannot. I still feel so much anger towards the people who stopped me, even though they did not stop me.

It was my brain injury that stopped me. The only thing the people I keep blaming did was make me see that I could not teach and even now, I refuse to see it. I would rather focus my rage on them than accept where I am. Why is it so difficult to admit my own limitations? Why is it easier to make it seem like these limitations were imposed on me by others? I struggled and fought and failed and suffered trying to teach for four years after my surgery. Yes, I made a huge difference for some children. Yes, I contributed to the education of some students. Yes, there were some parents who were very grateful for what I did for some students. As a teacher, I was supposed to be able to teach many children. In previous years, I was able to teach over one hundred children in a year. I was able to collaborate with colleagues and contribute to the growth of the school. I was able to mentor new teachers, speak eloquently at parent forums, inspire minds, advocate effectively, and so on. Such is the life, the job, the expectation of a teacher. The thing is I was really good at it so when I was injured everyone just expected me to continue doing it but just not as well.

My doctors, my family, my boss, everyone just said that it was fine to just be an okay teacher. Just phone it in. Do the job and then go home. You don't have to be fantastic at it anymore. Just do the minimum and even then you will probably do a good job. A good enough job. Just say yes to whatever you are asked to do. Just agree with what you are told. Follow the plan. Stick to the basics. Go along with the crowd. It sounds so easy, doesn't it? I just couldn't do it. It was not because I am stubborn or defiant or a perfectionist. It is not because I wanted to fail or lose my job. It is not because I am in denial about my injury. It is not because I did not have help. I just could not do it. I tried really hard. No one can say I did not try. I gave up piece after piece of my job to make it easier to do the minimum. I relinquished control, I took on less, I rested, I accepted accommodations, I demanded even more accommodations but I still could not do it. It seems counter-intuitive that if I was a great teacher, I could not be a good enough teacher.

Maybe only another teacher can understand how incredibly complicated a job it is. Perhaps, there is no such thing as a good enough teacher. Every teacher is a great teacher. It is just that kind of job. It demands every ounce of your energy and every cell in your body. It demands all of your patience, compassion, intuition, creativity, ability and strength to go on every day. People envy the vacations a teacher gets but it is hard to imagine how essential they are and how often they are not enough to fully recharge the batteries.

I am not the same person I used to be. I need to begin to mourn the loss of that individual. Right now I know that it is important for me to let go and be sad. I will try to be respectful of those who tell me to be grateful for all that I still have but I know this is a period of intense letting go. It is going to be hard work and it is going to be painful but i have to mourn before I can move on. Please let me do that. Please help me to be sad, to bury what once was, to cry over what I lost. It is okay. I will emerge a stronger person after this. I promise. What was killing me last year, what I could not handle, was trying to be something I am not. I will be okay. I do not know when and I do not know how but I know I have to cry right now if I am going to smile some day.

What are you doing?

2011-08-02T12:30:00.000-04:00

What a disaster! So much drama!

This morning at 8 AM I employed this excellent system to keep me on track. Excellent until the next BIM gets me into trouble or even worse.

My post-it said "clearing the floor" and my timer ran for 20 minutes. I got distracted at times but kept seeing that sign and that timer and getting back on task. Then I wrote "clearing your work table" and in another 20 minutes of the timer, my sewing room was beautiful.

Next, as I said in my previous post, I decided to blog about my success. Well, the picture I took with my phone would not transmit through bluetooth so I researched Apple posts about said problem and discovered it was not uncommon. I SWAPSed that problem and chose to use the digi camera but the battery was dead. While I was getting the charger, I heard a woman threatening someone outside my window. The woman being threatened said, "I am going to call 911." I HAD TO GET INVOLVED!

I will not stand idly by and allow crimes to be committed on my street. I am a responsible upstanding member of the community and I really do care. I am not joking here. A lot of people do nothing and advise others to do the same because it draws unwanted negativity. I don't want the attention or the focus but I cannot stand by and allow others to be bullied.

So, I open my window to a woman yelling. "Keep it up! I'm going to f@*k you up bitch!" from her car to another woman standing on the sidewalk with her doggie.

I tell the woman in the car (I live on the second floor, like Luka) that I am calling the police and she threatens me too. She says, "I know where you live. I am gonna to come back for you. I'm gonna send my cousin here and you better watch out. It may not be today or tomorrow but you gonna get f@*ked up!"

Well, if that does not bring out my crazy I do not know what will. I grew up in this neighborhood when it was bad. I went to school with this woman (not literally, although I may have). I let kids hit me, kick me, call me names, pull my hair or put gum in it, knock my books down, take my candy, and warn me that I better run home after school or they were going to... I did not fight back. I don't know why. Maybe, because I had my sister to defend me or maybe because I was terrified or maybe because I was tiny. I was so tiny. In sixth grade, I still wore a kid's size 13 shoe. In seventh, my Super Pro Keds were an adult size 1. My bathing suit was a size 6X. I could still fit into the shirt from the shorts set from Sears that my grandmother gave the summer I went with her to live in Puerto Rico three years earlier. Here I am in sixth grade wearing the polyester shirt.

I have a lot of bottled up anger inside me and there are times when adrenaline takes over and subconsciously, I recognize the opportunity to unleash my rage and I seize it. With a TBI, those emotion are very close to the surface. I know this because when it was over I did a quick emotional cycle, and I realized besides fear, anger, and outrage, I felt exhilarated. I scream back, "BRING IT ON! I can't wait. I am ready for you anytime. You have no idea how crazy I am. Do you want me to come down right now? Let's do this! You picked the wrong bitch to mess with!" I do not even hear her response. I call 911 with the window still open and report that a woman is outside my window threatening to kill me. I knew the dispatcher was not taking the call seriously at all. She asked, "And how did you come to be involved in this incident?" When I tried to give her the license plate number, she said I could give it to the police when they got there. I made her take it down anyway. She took my apartment number down and assured me that the police were on their way.

Well, no patrol car came. Then I hear horrible screaming from the street and a dog barking and the woman saying something about getting the other lady up in that window too. I look out and the bully has come back without her car, bearing a pipe. The other woman ran to the safety of a neighbor's car while her Javanese-mutt blend barked menacingly to protect her. The bully did not see me and I started to feel afraid. I could not believe the police had not come yet. I had tried my local precinct to no avail by then so I call 911 again. The dispatcher tells me a patrol car came by and did not see anyone so they left. WTF! He says he'll send another car. When I go downstairs, I ask my doorman and some neighbors if they know the woman who was threatened or if the police came. My doorman talks to me like I am paranoid and my neighbors refuse to make eye contact. Nobody heard anything.

When the police arrive, I have to will myself to calm down because the moment I start talking, they roll up the windows and get out of the car and I realize I am the one who is going to get arrested if I do not figure out how to make myself clear. It was useless. They do not understand that by not responding right away, the woman had the opportunity to go park her car, find a pipe (where? in the conservatory?), and come back to attack us. The fact that there were a couple of dozen people on the street who did not seem to even notice anything scares me even more. Kitty Genovese, here we go. I could be murdered in broad daylight in front of several witnesses and no one would do anything. And I am the crazy one? There was a lot of. "Ma'am I am trying to explain to you..." and "If you will just listen, you will understand..." They would not have even written anything down if both the other woman and I had not insisted. They gave me a slip of paper with the blank claim number area circled and all my information on it and told me to call the precinct in 24 to 48 hours to get the claim number. What? Why are they giving me back the information I just gave them? It was not even a duplicate form. They wrote nothing official down just put some stuff on the back of a piece of paper and folded it up. When I asked about this, PO Toro asks me if I am trying to tell her how to do her paper work. "I am going to copy it over. I don't like my reports to be all sloppy." I gave them the license plate number too. I want to put it here in my blog but I guess that might be stepping over the line. At least I have a line somewhere.

Four hours after I came up with an excellent plan, life and my brain injury got in the way. I need a vacation. Fortunately, I have one coming up and from the weather forecast I just read, I may be spending a lot of time indoors blogging.

Useful Systems

2011-08-02T10:02:00.000-04:00

Yesterday my neuropsychologist said,

"You seem to have some strategies for doing things. I am wondering how successful they are."

My response, "Is that your way of asking me if they work or are you just thinking out loud," while mildly amusing at the time sent me off on a tangent.

I had just completed the cognitive testing following the completion of the exercise study in which I participated. One of the tests is to listen to a list of 12 words and repeat back as many of them as you can remember. (SPOILER ALERT: If you ever have to take a nueropsych evaluation test and you are afraid you might come across as smarter than you really are do not read the rest of this paragraph.) I find and have always found this an incredibly easy test because the words always fall into exactly 3 categories each of which has exactly 4 words. For example, there could be 4 vegetables, 4 gardening tools, and 4 jungle animals. Apparently, most people taking the test don't see this and just try to memorize a list of 12 random words.

Later during the session after a few other sub-tests, the tester says, "Do you remember that list of words I gave you? How many do you think you can remember?" Well, to me, the obvious response is "12," or "All of them." If they want me to list the words why not say, "Please list as many of the words as you can remember?"

So, off we went on a tangent, that led to another tangent and Dr. T's query was never addressed. At least not that I can recall. When I reflected on the session during my walk home, I felt embarrassed that instead of taking advantage of my therapist's training and wisdom to learn something new, I was paying a rapt audience of 1 to practice my stand-up routine. Oops.

It left me thinking about my strategies. I am a creative problem solver and do generate many excellent strategies but do I use them enough to make them habit? No, probably not. I like to think it is the curse of the creative mind that the ability to generate many solutions is linked to the inability to execute them successfully, thoroughly, or repeatedly. A never-ending loop is developed because as one strategy is forgotten a problem is created generating the opportunity for yet another solution. Often in my infinite wisdom, I pat myself on the back for coming up with a great "new" idea, and then the mocking disorganized mess of my computer's Documents file reveals that there exists a file last modified on February 15, 2009 with evidence of that same novel concept. Yes, another BIM. That is my new acronym for brain injury moments. Without the sisyphean battle trying to hold on to my job as a teacher occupying all of my energy, I am finally able to notice, reflect on, and even laugh at some of my BIMs.

Today when my husband left for work, he said take care of what you need to do. Of course, he was referring to my effort to create a packing list for my upcoming trip. Here I am blogging. Earlier this morning I decided to try a new strategy and was so excited by how successful it was, I came up with another strategy to help me use it again. Blog about it.

Here it is:

Okay I just wasted 15 minutes (maybe more) trying to figure out why bluetooth sharing will not allow me to turn it on so I can send the photo of the awesome new system I created to my computer. I am off to use the new system to re-photograph it with a digital camera. Timer set for 5 minutes.

Well, the best laid plans... blah blah blah. My battery was dead and I got involved in a street incident and so now the police are on the way.

RTW after TBI

2011-07-21T07:30:00.000-04:00

I am part of a discussion group concerning issues of brain injury. Recently, I contributed to the topic of returning to work. All of the research suggests a supportive work environment with positive feedback with the goal of addressing concerns prior to a crisis. This was what I added to the discussion based on my personal experience:

The problem I had, and that I see as an obstacle for anyone returning to work is that there are "crises" that do irreparable damage and then all the review, support, and feedback are useless. It is almost impossible to anticipate what will bring out these disastrous moments. Whether you go back to work immediately or you take time to recuperate, nothing tests your limits like the stress of work (except maybe navigating the NYC subway system). Once I had my first inappropriate, emotional response to a colleague brought on by fatigue, auditory processing problems, unexpected confrontation, difficulty reading social situations, and impulsivity, I was treated differently. No amount of education or explanation that my actions were unintentional and not personal can erase the damage that was done. From that point on, the anxiety that I was going to overreact again contributed to my ability to concentrate and do my job. Working in an environment where my colleagues expected strange behavior from me became a self-fulfilling prophecy.

The feedback I got, while well-intentioned, did not help. Think about how others feel. Try to control yourself. By the time I started to get the cognitive rehabilitation I needed, it was too late.

I am happy to be on disability now. My family appreciates the less stressed me. I can focus on my recovery. I have more time to exercise which is crucial to my well-being and cognitive functioning. I feel like a more capable member of society than I did when I was working.

I would be very leery of going back to work now. I am not sure I could work in any capacity involving face-to-face interaction with other people. Every BI is different so I cannot speak for others, but the Internet is a beacon of hope for me. Time will tell. I really want to be of service and part of the solution. The BI community needs this and I know we can figure something out together.

How would you interpret this picture?

2011-07-13T10:30:00.000-04:00

Last year when I was still struggling to do my job, I asked two of the kindest, most generous women at work if they would consider mentoring me. They both work in the Learning Resource Center and therefore have a lot of experience with students with disabilities. They agreed, and we met every couple of months to set goals. If I ever needed advice on how to handle a social situation, their advice was always dead on.

One day I walked into work and on my desk was a present, the above picture in a frame wrapped in pretty paper. I started to cry because on the card was written, "I saw this and I thought of you." It was signed by one of my mentors. I was not crying tears of joy. I was hurt by what I thought she meant. After discussing it with my neuropsychologist, I decided to ask her what she meant by the picture.

I was so way off in my interpretation of the picture, it was bizarre. I am still not 100% sure how to interpret it so I am soliciting suggestions. Anyone out there reading this blog, please leave me a post telling me how what you think this picture says to you when accompanied by the message that the picture made someone think of me.

Do not tempt fate!

2011-06-28T08:28:00.000-04:00

Last night I got the news that the boyfriend of a friend of mine died. He had brain cancer and lived 27 months after his diagnosis. After his first surgery, my girlfriend asked me if I might share some of my experiences with him. I was happy to oblige. His first tumor was on the right side of his brain. He was in denial that it had affected him at all, that there may have been some residual "brain injury."

About a half an hour after reading the email, my heart rate shot up for no apparent reason. I was sitting on the couch watching The Bachelorette, thrilled that she finally said FU to the egregious Bentley. I got up to get an ice cream and the room was spinning. My eyes could not focus and my heart rate increased. I asked my SO to take my pulse and indeed it was quite high. He kept insisting that I might be having a reaction to the news but I said no. I have frequent panic attacks and this definitely did not feel like one. We called the doc and she said to go to the ER. We tried but by then I could not walk and was having trouble breathing so we called an ambulance. The paramedics arrived and my limbs were losing feeling. In the ambulance, I was sure I was dying. I saw the white light and I felt at peace. Then suddenly I was struck with the thought that I was not ready to die. I started to feel better when we arrived at the hospital but the ball was in motion and they had to do all the tests to make sure it was not a heart attack.

Needless to say, it was not a heart attack. I walked home from the hospital a half hour ago like I was Ebenezer Scrooge on Christmas Day. My glib post from yesterday mocked me so I had to write. More about my own denial about my brain injury to come soon.

Do you know what scares me more than the thought that my life might be half over?

2011-06-27T15:09:00.000-04:00

The possibility that I have not reached the halfway point.

because I got a TBI

2011-06-22T17:32:00.000-04:00

I was gonna clean my room until I got a TBI
I was about to find the broom but then I got a TBI
My room is still messed up even though I try
- cause I got a TBI [repeat 3X]

I was gonna get up in the morning before I got a TBI
I’m always tired and so sleepy cuz I got a TBI
I am napping all day and I know why
- cause I got a TBI [repeat 3X]

I was gonna go to work but then I got a TBI
I didn’t get the promotion cuz I got a TBI
Now I'm on disability and I wanna cry
- cause I got a TBI [repeat 3X]

I was gonna go to court before I got a TBI
I was gonna sue your ass but then I got a TBI
They got away with all of it and I know why
- cause I got a TBI [repeat 3X]

I wasn’t gonna shout in your face but I have a TBI
I was gonna keep my mouth shut but I have a TBI
Now I got no friends left and you can see why
- because I got a TBI [repeat 3X]

I was gonna take a shower until I got a TBI
I was gonna put on some fresh clothes but then I got a TBI
Now I’m sittin’ in my own funk and swattin’ at a fly
- because I got a TBI [repeat 3X]

I was gonna make some healthy food but then I got a TBI
I was gonna eat some veggies too but then I got a TBI
Now I'm eating corn flakes from the box and they all dry
- cause I got a TBI [repeat 3X]

I mess up all my sentences because I got a TBI
I lost my memory and sense of time because I got a TBI
Now I don’t know how to do what I do or even why
- cause I got a TBI [repeat 3X]

I'm gonna stop singing this song because I'm a TBI
I'm singing this song wrong because I'm a TBI
And if nobody hears me I know why
- cause I'm a TBI [repeat 3X]

Defensive Driving Tips Part 2

2011-06-22T06:19:00.000-04:00

Know where you want to go.

I am sorry I took so long to resume my posting. The momentum for my defensive driving metaphor is diminishing as entropy sets in.

I spent about a week in Missouri visiting my aunt and grandmother. I have not been so happy and comfortable is a long time. They were both so kind and welcoming. It really felt like home.

My grandmother looked exactly the same as I remember her. She is thinner and not as steady on her feet as the last time I saw her. Her hearing is going but she does not seem to mind too much. When she picks up a piece of the conversation around her that seems interesting, she just asks. "Who is that? What did she do?" Upon hearing the information she sought, her response was so adorable. "Oh, did she? Well, how about that." I did not realize how Minnesota she sounded until I discussed it with my mom on the plane ride home.

(Total non-sequitur alert! My whole life I have always said my mother or my mom in conversation. It bothers me when someone says Mother or Mom in reference to her own parent. I know that she is using it as her mother's name but hundreds of millions of other people's moms have the same exact name. I read it on other people's blogs and it still irks me. It makes me feel like they claimed it first. Imagine a conversation between two people talking about their respective mothers both just saying Mother.

"Mother bought me a sweater this weekend."
"Oh? Mother had her art opening on Saturday."
"Yes, Mother mentioned it."
WTF!)

Now, back to our regularly scheduled programming. What was I writing about? My lovely grandmother and my awesome Aunt Kay. I had not seen my grandmother since I visited her 22 years ago with Sachi. It was the summer before I started teaching and now I returned the summer after I stopped teaching. An interesting set of parentheses around a career. Maybe a tornado picked me up the last time I was in Missouri and I have been off trying to find the wizard for 22 years. I was conked on the head and woke up muttering, "There's no place like home."

I slept and slept. Occasionally, my Aunt Kay would be suddenly appear startling me from my slumber. Not in a disconcerting way. Just a surprise. In many ways, she reminded me of me. She is funny and opinionated and a little bit cynical. She is unpredictable and would sometimes disappear, even right in the middle of a meal. She loves her sweets and her coffee, just so. She is generous and gives thoughtful gifts. The last time I saw my Aunt Kay was at my first wedding in 1985. I do not remember much about that day so my real memories of her are from my childhood. In the fall of 1970, my mother took us to live in Santa Monica with her mom. My aunt Kay lived about a mile away. One day my brother and I walked to her house alone without telling anyone. We were both so impressed with ourselves that we could find it. My mother was less than impressed when she could not find us.

I cried on the plane home, already missing both of them. I want to go back soon.

This morning I woke up with a singular thought reverberating in my head compelling me to write.

Who am I? Who am I?

I do not know the answer anymore. I am 48 years old and I am going to have to come up with a new answer. I am not "disingenuous" and anyone who accuses me of such can go suck it!

Navigating a Social Life After a TBI

2011-06-12T16:18:00.000-04:00

I was trying to describe to my neuro-psychologist how difficult things became at work after my surgery. After one or two disastrous run-ins with co-workers, things went quickly south. All it takes is making one inappropriate comment or misunderstood joke, for people to be on the look-out for the next one. Once that started, I was doomed. I started to feel uncomfortable because of the confrontations. I realized that there had been meetings about me with the principal before any meetings with me. Combine this with not understanding exactly what was being said or what people's intentions were and I was totally on guard. When the other teachers glanced at each other while I was talking, I became very anxious. Even worse was when nobody would look at me at all. The anxiety made the confusion worse and lowered my ability to maintain self-control. I began to dread meetings days in advance, working myself into full-blown panic attacks before they even happened. If anyone dropped by my classroom unannounced, I was terrified of what I might say or do to worsen my situation. This past year I asked to be excused from all department meetings because after three years of trying to make amends by being overly obsequious, I had only made things worse. My absence was interpreted as snobbery instead of total terror. "I'm not going to share my plans with Alyson. She won't even come to our meetings."

I bought every book on how to improve my relationships at work. I tried giving sincere compliments praising their work. I recognized birthdays and other celebrations by buying gifts and cards. I brought in food for my colleagues and left it in the staff room. I made myself smile and say hello and how are you and how was your vacation. I shared supplies, bought books for others without being prompted, and offered to do errands like copying or making labels. I said thank you and wrote appreciative emails detailing any positives and ccing the principal. I admitted defeat and asked for help until finally it was just too much. How attentive could I be with a TBI? Well, not attentive enough, as it turns out.

I likened the experience, for my therapist, to defensive driving. That is how it felt. I had to be on, on, on all the time to avoid careening into oncoming traffic. The aim of defensive driving, according to Wikipedia, is to reduce the risk of driving by anticipating dangerous situations, despite adverse conditions or the mistakes of others.

The level of vigilance it took me just to get out of the house prepared for work and on time was already taking a huge effort. Being in front of a group of children trying to convey math concepts, build confidence, nurture skills, and empower children to reach their potential was also hard. Now, add in my effort to incorporate all my defensive driving strategies despite accident after accident. Eventually, I realized there was nothing I could do. I just watched the inevitable car wreck as my twenty-two year teaching career burst into a flames and skidded off the road.

Defensive driving strategies seem more accessible without the stress of work. So, I will share my approach to social situations here.

One strategy is to leave plenty of space between you and other drivers. This is good advice both physically and metaphorically. I am sometimes impulsive and if someone is wearing a fuzzy sweater or clothes with an intriguing texture, I am apt to suddenly touch a sleeve or shoulder without warning. This is not cool. Most people do not like it. I do not like when people get too close to me either so this works both ways. It is also helpful to remember that I do not need to share everything that pops into my head with the other people. Keeping some of it inside maintains distance.

I am tired so I will continue tomorrow.

Identifying

2011-06-10T12:48:00.000-04:00

I know you are probably trying to be sympathetic or relate to me in some way, but when you identify with what I am experiencing as a result of my brain injury, I do not feel heard. Often, when I tell someone that I cannot remember what I was doing five minutes ago, he or she will say, "Oh, that happens to me all the time." Or in response to the fact that I cannot remember the names of things or the word I am trying to say, I get, "Welcome to aging."

I can't tell when I am hungry or full because my brain does not receive the message my body is sending: "I know! Sometimes I just keep eating and eating."

I get lost in places that were once familiar: "Oh, I have the worst sense of direction."

I do not remember whether or not I have met someone: "I know. I am the worst with names."

Everyone has experienced the feeling of telling a personal story only to have someone turn the conversation around to that person because of a one-up story or even a totally unrelated story that your story brought to mind. Often it is in an attempt to relate but sometimes it undermines your experience or feels competitive. Take for example, Peggy and Alexis on the Real Housewives of Orange County. You know Alexis is insecure and has to make everything about her. Oh, I forgot what I was trying to say. "I hate when that happens."

Listen folks, I know we all share certain experiences and that is what makes us human. I want to give you the benefit of the doubt and not assume you are trying to say that because you experience the same thing, my brain injury is really not something unusual. When you say those things to me, I feel petty pointing out that all those things happened to me overnight. Not to mention that in combination with all my other symptoms, I now have a debilitating, chronic condition which prevents me from working. I can't imagine that you mean to undermine my experience with your comments.

Before I left work, I did and said so many things I wish I could take back. Early on, before I knew better than to try to be funny, I said something hurtful about a colleague. "Don't you want to come to the Christmas Party and watch ___ get drunk?" The teacher I was talking to was appalled and said that I was really mean. I quickly apologized and admitted that it was completely inappropriate. When I mentioned that one of the side effects of brain injury was difficulty reading social situations and impulsively saying the wrong thing, my colleague asked. "Don't you think you might be using that as an excuse?" An excuse? An excuse for what? The fact that I am actually an insensitive jerk? Yes, I am using it as an excuse. And as my doctor pointed out it is actually a legitimate excuse.

I wish I could compare TBI to some other disabling condition so you could understand how inappropriate your comments are! Would you tell someone with a prosthetic hand that you drop things all the time because you are really clumsy? Would you tell someone with agoraphobia that you also hate crowds? What about someone with diabetes, would you say that you too should really avoid sweets? Would you say that your vision is really getting bad now that you are older to a person who had just gone blind? No, all of those comments would be considered insensitive. Why then are the comments to a person with a TBI considered okay?

Let me tell you what I mean by getting lost so you can understand how different it is for me. I never had the best sense of direction but fortunately in Manhattan you do not need to have one to get around. It is a grid system so the street numbers go up as you go north, and the avenue numbers increase as you go west. Plus, I have lived here my entire life so I rarely thought about it before my surgery. Last Christmas season I met a friend at the Museum of Modern Art. I knew it was on 54th Street near Sixth Avenue but I wrote it down for myself just to be sure. I decided to get off the Seventh Avenue train at 50th not 59th because it was closer to the museum. I got off and started walking in what I thought was the right direction but when I had reached 47th Street I realized I was walking the wrong way so I turned around. When I got to 52nd Street, I thought I had gone to far so I turned around again. When I reached 50th Street again, I started to worry out a little. As soon as anxiety or frustration begin, my ability to problem solve or navigate decrease. The second time I saw 52nd Street I wanted to cry. It feels like someone is playing a trick on you and moving the street signs around. By this time if I ask someone for help, I may come across as slightly unhinged so I am hesitant. My senses are flooding with unnecessary stimulation, the noisy cars, the loud crowd, the smells of street food, the alternating puddles and mounds of plowed snow. All the buildings look the same and I no longer remember if I have walked by them or not. I keep looking back at the piece of paper and trying to figure out which way that street would be relative to where I am. It sounds absurd but this happens to me about once a week.

I have been on a campaign to become a more positive person this year. I do not want to drive people away by complaining all the time but primarily I am doing it for myself. Hence, I will vent on this blog. Like Bart Simpson punching the air with his eyes closed warning his sister that if she gets in the way and gets hit, he will not take the blame. If anybody reads this, it's not my fault.

Commercials

2011-06-05T21:10:00.000-04:00

One of the bloggers I follow posted a list of songs she purchased as a result of watching commercials. I recognized all of the songs and commercials but none of them compelled me to purchase the music. These songs embedded in the linked commercials did manage to persuade me to part with a few bucks so I could hear them again. I think you can tell a lot about a person by listening to the music that hooks them.

"Remind Me" by "Röyksopp"

"1234" by Feist

"Flathead" by the Fratellis

"Somewhere Over the Rainbow" by Israel Kamakawiwo'ole

"Chelsea Dagger" by the Fratellis

"One Week of Danger" by The Virgins

Teacher Training vs. Teacher Knowledge

2011-05-30T12:45:00.000-04:00

I know I am not supposed to care about such things anymore but... Recent studies show if math teachers want to be more effective they need to understand more math. All the workshops in the world are not going to help you get a point across if you do not understand that point in the context of the bigger picture.

Learn more math!

Teacher Training Does Not Help

When will I forget?

2011-05-29T10:13:00.000-04:00

After my cavernoma bled into my brain and I had to have a craniotomy, my memory suffered a major blow. I forget a whole lot of stuff. I don't remember people I have met, places I have been, words for things, and episodes of tv shows. That last one is major since I used to be able to recite the entire plot of a tv show, often quoting the dialogue verbatim. Now, not so much. The weird thing is I cannot predict what I am going to remember and what I will forget. I used to argue with people about stuff that happened. Now, not so much. It is pretty safe for me to assume I am wrong. When I was at work, people actually mocked me by saying, "I thought you said you couldn't remember." Okay, true. I did say that but... If you want to guarantee that I will not forget something then add some emotional trauma to the incident. For example, insult me and my intelligence. Question my judgement or ability to do my job. Point out all the tiny mistakes I keep making and exaggerate their importance.

There is nothing like a whole bunch of people you no longer trust telling you that your perception of reality is skewed to feed a growing feeling of paranoia. I want to forget everything that happened at work. I want to be free of all of it. I was officially approved for disability so I do not have to worry about my ability to "do my job" anymore. It was decided for me. I am still having bad dreams, yelling out in my sleep, and waking my husband.

Today as I was basking in the sun on my roof, a voice said my name. It was a former colleague and friend. In fact, she was with me the weekend before my bleed. (My husband thinks the bleed started that weekend though because I came home complaining of a headache.) I went skiing with three friends. It was amazing. I had not been skiing for many years and I was worried about my endurance. It was not a problem. The other gals were quite athletic and snowboarded, so I skied alone. It was fantastic though. I felt very free and happy. At night, we watched The Departed over and over again. Every time we put it on two of my friends fell asleep so we kept trying to replay it. The love scene with Leo was so hot and I kept listening to that song. Only now as I think about the lyrics, "I have become comfortably numb," do I connect them to the numbness that crept down the left side of my body in the days following.

On the roof, I was struck by a wave of unpleasant memories. Everything about work and the last four years hit me and I was near tears. I worked closely with this woman for years. We both taught sixth grade math together. I went to many of her birthday parties. She came to my wedding (as did all of my former colleagues). She was never mean to me at work. She never stopped looking me in the eye or saying hello. Very early in my return to work, fatigued and overwhelmed, my emotions flooded and my tongue let loose hurtful words towards her. I accused her of not supporting my ideas in a meeting, undermining my authority as math chair, and being passive aggressive. She was so upset. I was shocked that I had made her cry. Her response was bewildering to me at the time. Was she really surprised by what I said? Of course, she was. Professional people do not say these things in the work place and I was no longer able to filter my thoughts, words, nor actions. She left the math department that years so I did not see her as much. I was filled with remorse in the year after my surgery. My lack of control swept through all aspects of my life like a tornado wreaking havoc and leaving waves of hurt and disbelief in its wake.

It turned out that my former colleague was friends with a woman who lives in my building. There are 345 apartments in my building so it is not that strange. They met through biking. She shared news from school and reported that the other two women from our ski trip both got married this past March in the same weekend. I did not know. I was not informed. I was not invited. We are no longer friends. I have little to offer and my actions are often baffling even to me. I am okay with that.

When I was ready to leave the roof, I got up the nerve to go over to her and say goodbye. I asked her about her life outside of school and she asked after my family. She said to keep in touch and gave me her email address. I cannot tell you how grateful I felt for the normalcy of the interaction. As I rose to leave, she too rose and extended her arms for a hug. It has been so long. After my brain injured actions of the past four years left everyone distrustful of me, I am filled with gratitude for anyone who gives me a second chance.

The benign indifference of cookies

2011-05-26T00:31:00.000-04:00

So I baked some cookies this weekend. More than I should have, in retrospect. Monday I got this crazy idea in my head that I would send some to school for my former fifth grade class as a way to say goodbye. I attached a little note saying hi and I hoped the were doing well and how certain I was they were learning lots of math with their new teachers. I asked a good friend to send them to school. Big mistake. Now, as a result of my impulsive act and the school's refusal to accept the cookies and note, I have made people uncomfortable again. Worst of all my friend, with whom I had hoped to share a special day. Now, my presence is tainted with the stench of conflict and toxins of betrayal.

And all because of these stupid cookies. Look how innocently they smile up at you, mocking and shiny.

This is the one Tess got into.

Sly dog that she is, she hid it and waited for me to go to bed. She was sleeping on the couch and as soon as I turned off the lights and went into bed, she snuck off to eat it. I only caught her because she usually comes bounding into bed before my head hits the pillow. When she was quiet, I knew something was up. I never knew dogs could plan ahead. Well, at least somebody wanted my cookies, even if she couldn't have them. I am trying to take it in stride but I am deeply hurt at the rejection and being disinvited by my friend. I understand why but it still feels terrible.

I feel very alone and misunderstood right now. This too shall pass.

The Sun Is Shining In My Head Today

2011-05-17T06:41:00.000-04:00

I belong to an online support community. After a recent post, the moderator of the group wrote to me expressing concern that I get Positive Human Contact. This was my reply.

Thank you for your letter. That is one thing that I can continue to rely on. All things change and my mood is in constant flux. It is raining here in New York City so my head is hurting but physical pain can be remedied to some extent with meds.

Being away from work has relieved me of a lot of negative human contact. I think I got so used to those uncomfortable interactions on a regular basis that it became better than nothing. I was out of work three times this year before I finally left. After 22 years of working in the same private school, only a couple of my colleagues called me. I can never go back there. The email that the administration sent to all the parents and staff was so vague it left many people thinking I had a terminal illness. There is no way I can contact all the parents of all the children I taught to say goodbye. Even if I did, what would I say? I am not sick. I just have brain damage. Sorry I thought I could teach your kid but it turns out I couldn't.

A few parents did call me and so I am doing some volunteer work. It is essential to my sense of well-being. I am trying to get into a rehab program here in the city. We have the Rusk Institute and the Brain Injury Research Center. I am just starting a study on how exercise helps mood, cognition, and something else TBI related I can't remember right now. As I wrote those words, I suddenly realized the word I sought was memory. I kid you not.

On a positive, albeit harshly realistic note, my disability from the private insurance company from work was approved yesterday. I can't wrap my head around the fact that I am disabled.

I really appreciate you taking the time to reply to me privately. I don't even remember what I wrote now. When the sun is out, I cannot conjure up any memory of the rain. Unfortunately, the reverse is also true. Like my husband (who is Irish) always says, every day above ground is better than the alternative.

Your letter helps me remember to make an effort to find the positive. Please know that you really do make a difference.

When the chalk dust settles...

2011-05-16T00:22:00.000-04:00

who will be left standing?

I was asked to take down my blog and I did so with much sadness. I did not know you could password protect it so no one could read it. By the time I found out, I had deleted so much of it that I could not put it back.

I have missed writing here. It is more than a blog. It is a record of what happened and how I felt about it at the time. My memory is so poor that I do not remember whether I struggled or breezed through something, whether or not I liked someone, or what my experience left me feeling. Unless I was furious or stricken by intense emotion, I simply forget my feelings.

I started two different new blogs but I could not write. I missed you To Be Invisible! I did not know how much I missed you until we met again. I will salvage what I can and you will rise again. Forgive me for my misguided attempts to fight a losing battle by compromising my ideals. We will rise again together! I will not be silenced again!

What I am good at doing!

2010-10-06T06:06:00.003-04:00

I am good at seeing the best in children.
I am good at brainstorming. I am good at drumming up excitement and enthusiasm for math.
I am good at making up ways to make learning fun.
I am great at teaching the advanced math students because their pace and interest determines the route.
I am good at learning ideas from books to try in my classroom.
I am good at advocating for students and parents.
I am good at writing, this list format blog entry not being a prime example.

"You know that I could be in love, with almost everyone. I think that people are the greatest fun." song Alone Again.

I am obviously unread maybe even brown bread

2010-07-29T07:30:00.002-04:00

Today I go for Round Number 4 of a full day of neuropsych testing to see how well the 3 months of cognitive rehabilitation went. Six months before, one week before, one week after and six months after. At this point with my relationships further deteriorating, the misunderstandings piling up behind me, the wreckage of failed friendships, and the occasional dose of charitable pity, I feel like giving up. It is one of those sad, I just can't take it anymore days. Oh good, something to look forward to the deep morass, the sinking sucking black tar that will grip my whole body and weigh me down. I keep defending myself. I was just trying to help but then people get hurt. I am clearly misguided. My own cognitive distortions too strong to be distinguished from fiction, I will have to completely break from my own sense of reality to see my hand in front of my face. Can someone tell me why it is worth it?

Sometimes you really shouldn't trust people or how LCBD

2010-07-24T15:19:00.005-04:00

Ah, the wolf in sheep's clothing. I will beware after seeing behind the facade. No more fleece-eyes here. (soap-eyes, soap-eyes was a scary game Suz and I played as kids when we were getting ready for bed, remember? that and the throat-clearing noise threatening to spit toothpaste on the other's hands)

If you know me at all, then you know that lambs are one of my favoritist things in the world.

No, that is not a drawing of a goat. It was a goat but the artist did not believe the name sounded P.C. Hence, Fasheepey. In later renderings, his fleece is more apparent.

Aly had a little lamb, his fleece was slow to show.

And everywhere that Aly went, the lamb was sure to go.

At my school program this summer, I think I presented myself poorly. My social graces, the person I used to present initially is smothered under layers of complication. I learned this about myself recently. Reflecting back on the period of my life when I was in my late twenties and early thirties, a time of serial monogamy, I recall the observation someone made about me that I was so quiet when they first met me and how different I seemed after spending time with me. I had many transitions socially as a result of changes in steady boyfriend. With each new beau, there came a whole new group of friends (Usually. I did prefer guys with lots of friends.), and initially amongst a group I held back listening respectfully, gauging the situation, cautiously preparing comments to deflect attention away from myself until I felt safe. People deemed me quiet or shy after our initial encounters.

Truly, I am anything but that. In less social settings, I was judged as standoffish or aloof. Again, not me although closer. But, and I am not just saying this, I think my sister would concur, I did present as likable. In situations where I did not feel any pressure because it was unlikely I would see any of the people again, I was gracefully gregarious. I was accepted and welcomed, enjoyed and encouraged, socially adept and generally insightful. Suz brought me to a party after Sting performed and I worked the room like a pro. Even the events planner commented that I would be great at her job. One on one conversations were a breeze as a result of a lesson I learned from my favorite couple at that time A & M. The lesson M taught me was to just ask questions and listen intently, absorbing the person in like the aroma of baking bread.

Even my father used to say, do not worry about being included, just include others. WTF that meant. But it makes sense now. I did not worry for experience had taught me that I would be accepted and so I made others comfortable by casting them in the leading role for those moments in the movie of Aly's life. What was that like? Fascinating, and then you did what? I am so intrigued, I must know more. And like a chameleon, I had the outfit appropriate for every situation, hair and make-up adjustable, height and weight so insignificant no one would notice me. I will slip into your life and when you accept me, I might be myself.

And that was often when people were shocked by what came out of my mouth. My guard was down and I quipped to get a reaction. Scathing, funny, cutting, raunchy, bizarre, too close for comfort, edgy, off-color, or disturbing. But I meant it to stir the pot or stimulate the conversation, not to injure or attack. Of course, there were times when I was misunderstood and my comments taken as insensitive. I guess the people who really love me did not tell me how frequently this was the case but I still hold firm to the notion that I did not intend to hurt others and was quick to set matters straight after any misunderstandings.

Fast-forward to September of 2007 when my life began to spiral out of control. The vortex of chaos. I have always measured my self-worth by how I think I am judged by others. The reactions I got no longer matched who I thought I was. Did I change or did my ability to read others change? Neither? Both? My lack of understanding of the extent of my injury, my slow processing of input, my over-confidence in my perceptions, and my tendency toward impulsiveness created an unfortunate combination that reduced my self-efficacy to a pile of ash. No longer sure how I am being perceived, I mistakenly jump to the conclusion that I will not be accepted, that I will behave oddly and be shunned. This in turn becomes a self-fulfilling prophecy.

Away at school, I saw a counselor whose first name happened to be the same as mine. I joked that it sounded like a soap-opera title but I think it was more like an SCTV skit I saw once. Rick Moranis playing Dick Cavett interviewing Dick Cavett.

At our second meeting, Alison recapped our first meeting for me, her intonation, phrasing, rhythm, and voice sounding so eerily like my own. "Last week on Alison and Alyson discuss Alyson, ..."

But it is the weekend of the move and the words of B that weigh heavily on my heart. (Not my S.O. B, he is a pillar of strength. Tee hee. B, my S.O. looks better. But I digress.) I thought B could be trusted, that he liked me, that he would be honest with me, but I was so wrong and I hate that. Like an Etch-a-Sketch shaken, the image I had was gone with just one phrase. "You are not paying me now." Well, he better be paying me soon. He owes me 2 C and 1 L.

On the phone with E who mentions she will be leaving in half an hour, then to my surprise she is already gone when I arrive not 7 minutes later. I can only picture the speed with which she must have departed to be out prior to my arrival. No real surprise there but does anyone else see that the emperor is not wearing any clothes?

I trip, fall, and then, get up again.

2010-06-29T22:28:00.002-04:00

I am at school. A student, actually a graduate student, is what I am. It is a bit of a mind %*#@ if you want the truth. It feels like I am dreaming.

I know this looks so gross. It is one of the worst bruises I have ever had. I have to stop falling down. I need to go read. Wish me luck.

If I can't have my brain back, I may as well get a degree. It is like the Wizard of Oz tells the Scarecrow, "Why, anybody can have a brain. That's a very mediocre commodity. Every pusillanimous creature that crawls on the earth or slinks through slimy seas has a brain! Therefore, by virtue of the authority vested in me by the Universitatus Committeeatum e pluribus unum, I hereby confer upon you the honorary degree of Th.D."

Robotic Beings

2010-06-19T23:25:00.002-04:00

Why would this normal looking lady need a vacation? This is after three and half hours of studying with one of my favorite students ever! We needed a little comic relief so we did the robo-boogie because "finally robotic beings rule the world!"

Just seeing this photo makes me feel so happy that I do what I do.

I thought it would just go back to the way it was before.

2010-05-06T08:35:00.004-04:00

What a surprise! Things are so different. I am so different. I don't even know who I am anymore. Click on the title of this post to view my video 2 weeks after surgery.

Three Years Ago Tonight

2010-04-25T22:18:00.002-04:00

I was worried I would never sleep and then oversleep. My surgery was in the morning. I watched South Park and in my drugged post-surgery state, two days later, it is all I remember talking about. Brian sat with me through the night and then Matt took over at 5 o'clock in the morning. I was in so much pain. And so thirsty. I know they had to make sure I was really okay before they gave me the strong stuff, but it was awful waiting. I somehow remember that they said there would not be a lot of pain after the surgery because the brain lacking nerve endings. That sounds absurd now. Did anyone really say that? Did I really think that? It's been three years and my head still hurts. They cut my ear off and through my jaw muscles. They pinned my head into a brace that twisted my neck muscles into a contorted mess. And then I cried two days later when I finally woke up and they gave me drugs and I told and retold the entire episode of South Park I had seen. It was the one where Stan's dad is on Wheel of Fortune.

So what is new with me? Work has been awesome. I finally got an assistant who does an awesome job and can stand being around me! He was my third assistant this year. At one point, one of my third-graders said "What's up with you? Your assistants are dropping like flies." I got into a Master's program in educational psychology. I am very worried about my ability to do this but... I amble on. One foot in front of the other. I am speaking about my dad at Centro this Wednesday. I am selling crafts at the Knitting Factory in Brooklyn again on May 1st. My grandmother turned 90. My daughter met her teen idol, Jimmy Fallon and he was the coolest. He told her they should work together. My sister is getting mad press for her new albums. I saw her on the CBS news this morning and she looked beautiful. I think I am starting to look older than she does. At least she doesn't look 50!

RCK

2010-03-19T08:56:00.003-04:00

In 1974, 3 of the 4 kids in my family were kicked out of the Children's Community Workshop School. Suz was already at Performing Arts by then. The rest of us had to leave because the school asked for tuition. It had been free but I guess it just wasn't working without funds from the parents. We contributed in other ways, the food co-op, the storefront thrift shop, but I guess it wasn't enough.
I remember getting up at 4 o'clock in the morning and driving in a truck to Hunt's Point (quite an adventure for a 10 year old) to buy wholesale produce. One of the few times I ever saw my mom cry was when an old lady tried to barter some shopping bags for a block of the cheddar cheese.
The thrift store was probably where I developed my love of old clothes, that musty smell of moth balls, damp wool, exotic laundry soaps. My mom liked to volunteer to sort the new donations which gave us first pick and also meant maybe some items never actually ended up being donated. Hmmm. I am beginning to see our "contribution" in a slightly different light.

My favorite thrift store find was a pair of denim shorts in a Peter Max print:

I loved them so much that when I outgrew them, I sewed the legs closed and attached a handle to make it a bag.

I was diagnosed with a TBI in summer 2008. In Feb 2007, doctor's discovered I had a cavernous angioma nearly embedded in my brainstem after I had a bleed. I had surgery 2 months later and the doctor's were very excited with the results. I went back to work 6 months later full time as a sixth grade math teacher. Although during my recovery time I thought things were a little different work revealed major deficits. During my search for answers, my parents reminded me that I had suffered a serious concussion when I was in sixth grade, over 35 years earlier.

During a game of RCK (RUN CATCH KISS), I was desperately running away from Fernando a 14 year-old boy in my class. There was no way he was going to catch me because I really, really did not want to kiss him. I was running down a slide (brilliant) in a playground and I tripped at the bottom flying forward and bumping my left temple on a cement turtle. I do not know how long I was unconscious. There was little supervision in the yard of my overcrowded public school. I had only been at the school a couple of months but my regular teacher was also absent so I spent the afternoon drifting in and out of sleep on a couch in the classroom next door. When my father picked me up I vomited and then he brought me to the emergency room. They made my parents wake me up every hour that night and look out for any liquid from my nose or ears. That is all I remember. Then I went through puberty so if there were personality changes who could tell. My father who remembered the incident best died in August 2008 and with him I lost the chance to learn any other significant details. My search for medical records was futile because of the amount of time that has passed.

It is mind-boggling to me that some of the obstacles that have plagued me my whole life might have stemmed from this. I have always been extremely impulsive physically, acting in dangerous situations. This resulted in many more injuries. Despite my lack of coordination, I felt compelled to climb walls if it was a short cut, make off-balance lunges on tennis courts, and run and trip while trying to catch subways. More sticthes, bumps and bruises to my head. My husband used to call me Action Aly before the surgery (well, he still does sometimes but then insists I show restraint).

New Year's Resolutions: Get Real!

2010-01-12T06:24:00.002-05:00

Last year I remembered my goals all year because of the nmeomonic device ABC. Attention, Behavior, and ?? I am not sure. I have to find the piece of paper. I know I should have given it to S at the BI women's support group but I think I was still a little too paranoid at that time. Plus I wasn't finished (Am I ever?) writing it. I wanted it to be better.

So yesterday, we met again. A new year. New resolutions. A is for Attention - better. Oh I suddenly remembered what C stood for and I am pleased to say it is better too. Consideration. Behavior - much better thanks to Y, J, and T at the STEPS program. B is for Behavior, a part of the emotional cycle we worked on and understanding it in that context helped me feel much more in control. C is for Consideration - better. Attention helps with that. It's amazing what you hear when you actually listen to people. Still working on Attention - maybe too much on the wrong stuff.

New resolutions. Building, repairing, restoring my relationships at work, with family, with friends. Realizing my potential as an educator - graduate school? developing individualized math programs? not basing my self-esteem on the approval of others. Attention - still on there, I have to be on time, write things down, be aware of my physical needs and emotional state, Maximizing the use of my time, efficiency, minimizing my use of space, letting go of trash and shopping, setting limits for myself and sticking to them.

My new acronym:

REAL = relationships, education, attention, limits.

Am I a detail oriented person?

2009-12-10T06:28:00.000-05:00

     I am getting ready to finish my TBI rehab program. I only have a week left. It is amazing how much I have learned and yet it is the knowledge of what I need to learn that is the most valuable. When I awoke this morning, I remembered the dream I was just having. I had just won 1.3 million dollars in a lottery or contest that had been televised the night before. In my dream, I was in the lobby on my way to school and someone congratulated me. After a moment's hesitation, I remembered why and I started to dance around the lobby with joy. I know, I know, I am so lucky. What should I do? Should I sell my apartment? Should I quit my job? I was aware that I could not live on that money for long but it made the possibilities and prospects for life seem limitless and open and I felt great childlike joy.
   As I prepare to interview someone to be my fifth assistant in two years, many questions come to mind. How do I describe this job accurately? How can I make sure I screen for the necessary skills? What do I need someone else to do, so I can do my job? Yesterday I asked my advisor in the TBI program to help me. I said I needed a detail oriented person and Y said, "You are a detail oriented person. You need someone to help you see the big picture."
     I thought about this a lot. Was I like this before the stroke? before the accident? Always? No, I don't think so. Big picture, I think I was pretty good at. A very limited big picture that barely extended below 96th Street but still not just the details. I was not really detail oriented either. I held onto the details pretty well but maybe not always giving them as much value as I should have. I could remember the date Sachi was to start camp and the date of her return flight from her dad's in Japan but it did not occur to me that they were the same date.
   I always way overprepared for lessons but then I was set with what to do for awhile. Where did I put the materials was often a question? I always had a kid in the class who had eagle eyes and could locate what I needed. I developed systems to compensate for my disorganization. Specific compartments to hold what I had to give out, collect, take home, grade. But usually I ended up with everything in a great big pile. My brain was like a giant bucket full of sand. I could carry a lot and even when I overfilled it, the stuff that spilled off the top was usually (or hopefully) insignificant and minor. I could improvise with all that sand. Sand castles one day, examine the grains under a microscope the next.
     Since my surgery, I have felt that there was a big hole in the bucket. I went back to work and tried to do what I always did which was to just fill up the bucket. No matter how much I put in, it was never enough. It didn't feel full but I didn't know where the sand was going. I would leave work feeling vaguely concerned that I had not done enough and trail sand all the way home. I kept getting back to school the next day and looking into the bucket and realizing that it was empty.
     The reason I feel like I need a detail oriented person to assist me is because that is what I feel I have no control over. If someone could handle that part for me, I could do the big picture which is teach. Maybe I am wrong. I just get the feeling that I am bogged in details because they all seem equally important and slippery and transient.
     I love math and I love children. I know that when I am in a classroom with a group of children, I can figure out what they need to learn and how to make it fun. This is not enough though. Is there someone who can help me?

Multicultural Gingerbread People Sweaters

2009-12-03T06:31:00.000-05:00

As I was putting the finishing touches on my favorite Christmas sweaters, I noticed that I was calling them multi-cultural gingerbread cookies as opposed to people of color. You may recall from my previous post http://countdown2brainsurgery.blogspot.com/2007/09/how-i-got-my-first-doll.html that my dad disliked that phrase.

The cookies, like people, are not really different colors. The are shades or hues of the same color.

Wouldn't "People of Shades" sound cool? Picture Samuel L. Jackson or Will Smith in Men in Black.

Ultimately, Luke Visconti has a good point when he writes "unless the goal is to endlessly argue semantics, it's more useful to use a common phrase to describe people who are commonly thought of as not being white by the white majority in this country."Read More

Posted using ShareThis

I AM A GIRL!

2009-11-15T12:40:00.000-05:00

I think I have posted about this before but I just feel the need to say it again. I had a weird dream about a transitioning blond wo/man and it played out in my mind like an epiisode of Criminal Minds. At first I took it for granted that she was a she not a he, but gradually it began to dawn on me, even thugh she was so pretty and feminine... And then awake I think, "All people in my dreams are me...So? I don't see."

When I was young, 8, 9, 10, 11, 12, 13, my dad played softball and coached my brothers' baseball teams. An equal opportunity father (sometimes), he made me practice too. It was the seventies and the Feminist Movement was in full swing. I took Aiki-do for self-defense and promised my dad I would not go into a profession pigeonholed for women. I retrieved my mother's bras from the trash, hid them, and then secretly wore them stuffed to pretend I had breasts. I also learned to play ice hockey which was a great thrill. All suited up in the protective equipment, from shin guards to helmet, I realized even when I fell or threw myself in front of another player, it didn't hurt.

Softball practice with my dad was another matter. Things would always start out okay with my dad alternating between throwing at me, Tim, and Matt, but sooner or later the boys were dropped from the rotation because I could not follow the simple command of, "Stop throwing like a girl!" We were not allowed to say, "I'll try," or "I'm trying," in my family because those words automatically meant, "I am leaving myself an opening to fail." I will do it or I will not do it. Those were the choices but no one dared choose the latter. So the ball was fired at me harder and harder, the grimace on Ed's face meaner and meaner, and the words bellowed louder and louder: "STOP F*#@ING THROWING LIKE GIRL! It only stopped when I began cowering from the ball, jumping out of the way to avoid getting hit, crying tears of defeat, or the sunset prevented any accurate analysis of my technique.

I always wanted to say, "I am a girl, a little girl, a little girl who will never be a professional athlete, so it's okay if I throw like a girl," but that would have been labeled a cop-out. Despite my tiny stature, myopic bespeckled eyes, and complete lack of coordination, I was expected to perform like a man. Not just any man, maybe Dave Winfield. When I started seventh grade in 1974, I got new sneakers. Super Pro Keds, size 1. SIZE 1. That is how small I was. I could still wear some of my Size 6x, 7, and 8 kids clothes. I was the smallest person in my class every years from K to 8. How do I know? We had to line up in size places for every transition. I led the line for graduation in 6th grade and again for 8th grade.

Now this:

http://neuroanthropology.net/2009/02/01/throwing-like-a-girls-brain/

Sweater World Here I Come

2009-11-09T07:29:00.000-05:00

After months in the planning, my first sweaters are for sale on Etsy. Now you know why I never call you. Check it out:

http://www.etsy.com/shop/AlyVega

Shout out to my peeps:
A.R. I am thinking about you and wishing you a speedy recovery. I love you!
R.F. You have the patience of a saint!

S.E. You are my inspiration. Would I really be making these if I thought you were worried about what other people think? You wore the first one, pumpkin dumpling, cuddle bunny, and you wore it with pride! You fashion plate, trend setter!

Did you miss me?

2009-09-24T07:11:00.003-04:00

I am turning 47 on Sunday. I have basically been thinking of that as my age for the last sixth months so nothing new there. What is so bizarre for me is the idea that if live as long as a palm reader told me I would a few weeks ago, early 90's late 80's, I am only half way through my life. I cannot imagine living the same number of years in the future as I have in the past. 47 is a lot of years. What on earth can I do with all that time?

Having a TBI and much less of a sense of time, distorts the day to day hours, but years are different. 25 years since college. I was thinking yesterday that it makes me even sadder now that I reconnected with all those people in the hopes of having friends again, and since then I have not heard from any of them. I reached out (I think) but was not invited to Ridgefield or Ann Arbor or even downtown to lower Manhattan. I know when people have small children that is the central focus of their lives. So I can sort of understand.

I ran into my friend J. yesterday. We had a falling out before my injury. I still love her so much. Her middle son said he remembered me. I probably last saw him at his 3rd or 4th bday and he is 10 now. I gave him a Grant puppet I bought at the memorial and he said he still has it and is still quite a history buff. I told him a story about a lesson I taught in the 4th grade recently.

The lesson was to learn about U.S. coins. In pairs, the students sorted 6 of the most commonly used coins these days based on characteristics of the coins. So, if the rule was silver colored, you would put the nickel, dime, quarter, and half dollar on one side and the penny and Sacajawea dollar on the other side. The kids were more creative than I expected. I figured ridged edges and smooth, monuments on back or not, small and large, evenly divisible by ten or not, and more than one group noticed left facing heads and right facing heads. In one group, one partner was truly stumped. I, too, was unable to figure out the rule. On one side was the penny and the half dollar and on the other side the remaining 4 coins. After I gave up, I was stunned to hear the rule was people who were assassinated and people who were not. History buff, I figured, but who thinks that way?

BI Support Group

2009-09-14T00:24:00.000-04:00

So Monday I finally made my first meeting of the women's BI support group. The leader has an ABI like me. I learned that unlike a TBI, an ABI is caused by a bleed or a stroke or a vascular "accident." OOPS! I did not mean to rupture that malformity in my brain. Flipping body turns on you even when you're watching.

Life.Support.Music.

2009-07-07T15:57:00.008-04:00

is the documentary chronicling my friend Jason Crigler's recovery from a brain injury, will air Tuesday, July 7 at 10 PM EST. It will be shown on PBS, as part of their POV series. In the New York City area, the POV show is on channel 13.

Jason was the first person I met after my injury who had any idea what I was going through. He had an AVM which is a similar vascular abnormality but with much larger vessels hence a huge bleed. He is an amazing person and just being around him made me feel less alone in the world. He is also really funny and his delivery is so deadpan, you don't expect it. We had dinner at Henry's and when the waitress came over and asked if we had any questions about the menu, Jason said, "Yes, I have a question. Do you serve food here?"

Certain states will show it at different times. KCET Los Angeles and WHYY Philadelphia - Thursday, July 9 at 8:30 PM. WGBH Boston - Sunday, July 12 at 9 PM. To enter your zip code and find out when it will air in your area, go to http://www.pbs.org/pov/tvschedule/

He was interviewed on the CBS News

Below is a mixed media piece called The Bleed I did in the summer of 2007 in a workshop with Roberto Juarez.

All The Crabby Ladies Out There

2009-07-06T02:21:00.004-04:00

Well, my daughter's 23rd birthday was last Thursday and we had a lovely dinner at Aqua Grill. She loves raw oysters.

On my 23rd birthday, I was disappointed because I began that time of the month. I had been married for six months and since I wanted a lot of kids we had just started trying. We went out that night to see my sister perform and Sting was in the audience. I was so excited. My sister had mentioned that he was a fan but he was just sitting there like a regular person. I went up to him and told him I was her sister and it was my birthday and so could I get an autograph. Suz told me later he didn't believe I was really her sister.

Two weeks later, Sachi was conceived. Her dad had a business trip during the "most likely to succeed" days so I flew up there with him.

She is a Cancer just like my sister...and my niece. My sister's daughter was born 3 days before a significant birthday for her mom and this year she will turn fifteen 3 days before a most significant birthday for my sis.

All this just so I could show you the Johnny Depp pillow I just finished making so I could mail it to her at camp. I got her some other stuff but I gave Sachi a Jimmy Fallon pillow when she turned 15 so I figured why not? I read in one of those mother daughter type books that it was healthy for girls to have celebrity crushes because they were "trying out" the feelings or something. For me, it was Scott Baio. No pillow though. Just my dreams.

Moth Away! Sachets now available

2009-07-04T11:49:00.003-04:00

As promised if anyone would like to purchase my handmade herbal sachets I made for the Instructables contest, they can be found here: AlyVega.etsy.com

En boca cerrada, no entran moscas.

2009-06-30T14:53:00.003-04:00

"Whataya tellin' people that for?" my husband asks me frequently. I don't really have an answer. He is protective of me and more private than I am. He also thinks it gives people the wrong idea, the idea that there is some form of intimacy, when I reveal personal information to people I barely know.

I guess I sort of feel like I don't care what they think because stories are not me. Very few people are allowed to reach the inner sanctum and I reckon most of them end up a little sorry that they did.

One of my three water colors from the beautiful island of Providenciales in the Turks And Caicos islands. This one is called Bri Reading.

Back from Vakay...So?

2009-06-28T17:05:00.003-04:00

My vacation was great. It was so healing and helpful because I really tried to stay in the moment while I was there. It took me about three days to stop obsessing about work and problems and brain injuries. (The packing was only a tiny bit less hellish aided by little cards I made with items written on them so I could literally move the cards from one side of their pocket holder to the other as soon as the item was packed. Only problem was I forgot to put a couple of items on the cards so... I bought a toothbrush and a paperback novel in JFK. No biggie! Way too many dresses and sweaters. Too hot for either of those.)

Here is some more good news. I read TWO whole books on my trip. That is twice as many books as I have finished in the two years since my surgery. I was very proud of me. The first was the airport purchase: The Shack by Wm. Paul Young. I got into it and felt really spiritual and good. It helped me let go a little. Then I read The Pact by Jodi Picoult which I purchased at the school street fair for a buck. It was a great page turner and I was riveted. So neither was about math or TBI related stuff. I was really on vacation. I stopped having obsessive thoughts of inflicting serious damage on whatever was ailing me and started to just relax.

I watercolored my favorite rusty pier. I photographed my favorite rusty pier (as evidenced above). I pieced together a fabric interpretation of my favorite rusty pier and began embellishing it with found objects. I also taught myself how to crochet round medallions that sort of look like the pictures in the book. I might need some help with that one.

Bri and I snorkeled almost every day. We ate delicious desserts prepared by the same chef we met last year Aaron. Strawberries, whipped cream, and meringue. Heaven! We danced until sweat poured from our bodies and our clothes were soaked. We played ping pong, never breaking our early record of a rally of 33. I guess I picked up some mad skills in that mad house.

I was randomly assigned to the group that has to wait three months for my TBI research group to begin so that kind of sucks. I will work on my art and post more pics soon.

I woke this morning back at home screaming and angry at something in a nightmare.

At My 25th College Reunion

2009-06-06T01:09:00.004-04:00

The days are blurring together. The events, conversations, meals, information, new people, old friends, and living in the same dorm are forming one giant surreal mass in my brain. I don't know who I've met or what I've said. I tried to do way too many things today.
Mechele said the great thing about the 25th reunion is that while at the other reunions you were worried about whether or not you were successful enough, or too fat, or too bald or whatever, but now at the 25th it was much easier because there is always someone who had lost a parent or a child or a breast and those other things didn't seem as important. But in that moment before she finished the sentence as I was identifying with the sentiment she was expressing, I thought she was going to say, "There is always someone fatter or balder or less successful." And it just cracked me up that I would find relief in that, sort of.
I have to admit my classmates have accomplished some amazing stuff and I still feel pretty inadequate, but I did stop thinking about my looks a few years ago and I feel pretty good about my career choice and I am super proud of my daughter and happy in my marriage. Having the brain injury also takes the pressure off me to be smart enough now. Maybe I never was as brilliant but now I am very psyched about each and every working brain cell I have. It feels pretty good just to be here.

Good Sportsmanship!

2009-05-30T07:43:00.004-04:00

That is the medal I always got in camp when I was a kid. It meant I was a spaz but I did not realize it and blindly followed the rules of whatever game we were playing. Thanks for playing kid! We needed one more on the bench.

I got RUNNER-UP for my hankie!

http://www.instructables.com/contest/mothersday09/

"In case you were wondering, judges from Singer selected the grand and first prize winners while the runners-up were decided by user votes. Sorry for the delay in the results, Maker Faire prep has overtaken us, but we wanted to make sure these results went out out (just) before the weekend. Thanks again for entering a great Instructable and we hope to see more good stuff from you in the future."

reads the email from the organizer of the contest which ended a week ago. I actually tried to conceal the fact that I already own a clearly superior Bernina sewing machine in my photos. When a packet of needles ended up in the background of a photo, I left it there thinking, a little "SINGER" product placement won't hurt. Ha! This was not in the rules. I was so mad when I got the results of the contest two years ago. This time I know what I am going to do. They are going to send me a little robot tshirt, their cute little mascot and I am going to wrap it around our dartboard and throw darts at it. Eventually, I will hit it too. Many people don't know this but I played darts in a league for about 8 years. That's how I met my husband. I played B division most of the time but The one year I played in the C division, I was the Ladies All Star and I won a plaque. I scored more points (4375) than the other 45 or so women in the division. Of course, in B and A the Ladies All Stars scored well over seven thousand but whatever. The men in B and C who win All-Star usually score over 10,000 points. You see where I am coming from?
Last year as the school year was ending, I asked one of my former students, a lovely girl who came by every day to help me out in the classroom, if she would write a letter on my behalf nominating me for some national teacher award. She did so gladly and even wrote me from camp telling me that her letter won an essay contest. I never heard from those people.
External validation! Why is it so important to me? Where will I truly find it? How is success measured? Here is what is not so high on my list of aspirations: fame, fortune, power. Here is what is: knowledge, wisdom, validation, understanding, comfort, freedom, creativity, and beauty (not personal although it was important until time took over and I realized it was merely a gift or perhaps, a loan from youth).
Yesterday, I decided to let someone else handle a big problem for me in exchange for a large sum of money. I felt relief to turn it over but still fear that I will continue to be misunderstood.
I am out of synch with my environment. I seek harmony!

Oh BTW look for my Moth Away! sachets on sale soon over at Etsy.com
Link to be posted soon.

They won't announce the winners...

2009-05-27T22:54:00.002-04:00

I'm afraid to write in and ask when they will tell us who won. There was some weird voting shift where the day after the contest I was third then the next day I was first. What? I really don't get it. "The Contest Is Over." No one is asking so I'm not going to be the first. The last time I entered a contest it took like a week and then I didn't even get mentioned. I was crushed. There is so much going on in my life right now that I can't obsess about it. I want to teach math. I want my job.

Waiting, sewing, report card writing

2009-05-25T12:36:00.005-04:00

There is no more productive time in my life than report card writing time. I become a tidy homemaker, awesome baker of abundant treats, try out new looks with make-up all in the name of doing anything to avoid writing the reports. Have you noticed what a frequent blogger I have become?

The deadline for the sewing contest was yesterday. My last minute plea for everyone I have ever known to vote seemed to help as friends emerged with an out pouring of support. Having dropped to fifth, by the time I went to bed I was back in first place. Alas, when I awoke I had dropped to third. Now it is up to the judges. Of course I would love to win first place - a new sewing machine. The runner-up prize for the next three is also quite nice - a dressmakers dummy that can be re-sized. The two entries ahead of mine are lovely, a pillow and a fabric wall. I don't know what the judges are looking for but if it innovation then...a pillow? The fabric wall, an excellent idea to partition off part of the house to save energy, could be accomplished with a staple gun and does not really need any sewing. Okay, I am done knocking the entries that beat mine in votes just to make myself feel better.

I have made so many Moth Away! sachets that I think I will sell them on Etsy (link to come soon). I also made a bag for one of my tutoring students' birthdays. She has a much younger sister so I felt like I better make her a bag too. Here are pictures: Younger sister bag side 1:I think they came out quite well, no? Younger sister bag side 2:
Student bag side 1 and 2:

How would you feel?

2009-05-21T06:58:00.002-04:00

Let's say you had a job that gave you a great deal of personal satisfaction. A lot of people adored you and told you what a great job you were doing. Then you became disabled with a TBI so you were not as great but still pretty good. But the people in charge said, you can still work here but only a little and in a less important role and nobody you worked with remembered that you used to be good or had anything to offer. They still let you work there and gave you the same amount of money, so I guess you are supposed to feel grateful. But what if you weren't doing it for the money? Not at first, anyway. It was the love and respect and human contact that meant so much to you. Maybe your brain injury left you unlovable, disrespected, and easily avoided. I guess you'd have no choice.

Sewing Contest!

2009-05-16T23:48:00.001-04:00

Mother's Day ICE Hankie - More DIY How To Projects

Vote for me please!

Count Your Blessings!

2009-05-16T10:04:00.008-04:00

I went to the bank yesterday to deposit my reimbursement check for my recent sojourn to the NCTM conference in Washington DC. A very successful trip in many ways, BTW. For my 3 night stay at the hotel, I was upgraded to the Presidential Suite at a top hotel because they were overbooked. I paid the previously agreed on rate for a $3000 a night five room suite with Bose surround sound, a fully stocked kitchen, dining room, living room, guest bathroom, personal bathroom with jacuzzi, shower and a sauna that could fit 5 people (I did not partake because the titanium plates in my head do seem to conduct heat better than regular skull bone), dressing room, 3 tvs, and amenities galore.

Standing behind me on line at the bank were a mom and daughter of maybe 8 or 9 years old. The daughter was fascinated by the coin counting machine (the one behind the line had broken down and was being dismantled by an employee so it was open, revealing sorting channels and large bags of coins). Relentless in her pursuit of understanding, she asked her mom many questions in rapid succession about what it was and how it worked. Mom was distracted by her banking needs and had semi-tuned out her daughter's words. A teachable moment like this could not be resisted by the impulsive, altruistic, know-it-all in me and as I had already filled out my forms and had five people in front of me on line. I addressed Jamie directly saying many people have jars of coins that sit around at home getting full. I immediately got mom's attention because although she was not engaged in discussion with her daughter, she was keenly aware of her movements and safety. "Just like us" she said.
"Well, people bring those jars of change in and pour them in the top and the machine counts and sorts the coins. Then you bring the receipt to the teller and they give you the value in paper money. The machine also gives you a chance to guess how much your change is worth and if you are correct within a certain amount, you win a prize."
"What is the prize?" Jamie wanted to know.
"I don't know because I've never won."
Jamie's reply, "I would put in a penny and then guess 1 cent."
"Wow! That's very smart. Your daughter is very smart," I tell mom.
"Yes, when it comes to money, she is very good."
"The problem is you would still have to go to the counter with the piece of paper to get your penny back. You could bring your jar of change and count part of it, then put it in, make your guess, win your prize, and then do it again."
We discussed the many ways of outsmarting the machine and then Jamie asked, "What would happen if you cut a penny in half and put that in?" (The CutCo guy must have been at their house recently."
I explained how the machine sorts out the foreign coins, paper clips, keys, and other stuff that finds its way into people's coin jars and rejects them.
"That's what sometimes makes the machine break down like that one."
Jamie bemoaned the fact that she could not try her experiment to win the prize immediately. I pointed out that there was another machine on the far side of the bank that no one was using. Mom insisted Jamie wait, stay next to her, they would get to it. (I was identifying with the mom, trying to protect her curious daughter, take care of her banking, satisfy her daughter's need to learn.)
Then it was my turn to see the teller. As luck would have it when I finished, Jamie had just arrived at the coin machine and mom was at the teller just feet away. I helped Jamie interpret the directions, watched as she put in a quarter, a penny and then another. She was prompted to guess within $1.99 to win a prize so she carefully typed in $0.27. Mom came over just as Jamie pressed DONE. The machine congratulated her on saving so much, and issued a receipt for 26 cents and her prize.
Mom said, "I guess it lost one of your pennies."
I was already squatting down, as teachers learn to do when talking to smaller people, so I pointed out where the coins that did not make it through came out. The mom and I simultaneously noticed that there was a lot of change already in the slot. A lot!
Mom said, "Wow, I guess we'll split it," to which I replied no way, that her daughter should use it and try again.
Before I started to give her the coins , I couldn't help myself. I had to add a caveat.
"Just remember this day when something bad happens. Some days you are lucky and some days you are unlucky. You have to remember the good days when the bad ones happen."
"It's true," mom agreed. She had earlier accepted my presence, comments, interference, and dialogue as benign, for which I am deeply grateful.
I handed Jamie handful after handful of change and she fed it into the machine. Mom was as excited as we were and had taken over pressing the buttons. When it came time to guess the amount, Jamie said seven dollars. Mom said no way it was more like two dollars but compromised and typed in $3.
Out came the message: "Wow! You sure saved a lot of money. $5.70. Take this receipt to the teller to pick up your money."
No prize for the second round but mom was right, Jamie is very smart when it comes to money. Her daughter's estimate would have won. Jamie looked a little disappointed but I said you still have your receipt for the prize and now even more money. For a 27 cent investment, Jamie got a prize and $6.01 back. I wanted to stay to see what the prize was but I resisted and just said goodbye. The mom thanked me and I left.
The Instructor Strikes Again! ridding the world of misinformation and bringing knowledge to the minds of the curious.

The Universe is Reminding Me How Lucky I am

2009-05-14T18:26:00.004-04:00

I got into the TBI research program at Mount Sinai so I will get the treatment I need at no cost. The people are excellent and understand TBI. My job will continue to allow me to work there with the flexibility of getting the therapy I need. I can work with great kids and continue to learn and grow. I have parents who tell me that they will do whatever they can to help me because I have made a huge difference and their kids enjoy learning. It is a lot of work to reach all the kids. I feel strongly that no matter what a student needs it is my job to figure it out and help them get it. I am grateful that I understand that kids all need different stuff and juggling those needs is tough but important. The strongest students do not need nor deserve any less than the weaker students. Take each one and find the potential and then nurture that growth. At the end of the year if each student feels great about his or her progress, I have done my job. I have a vision of a school where students learn because they love to learn and teachers teach because they want to facilitate that process.

I think that's my stapler...

2009-05-12T20:51:00.001-04:00

In this economy, do I fight for my right to do what I do best or do I allow them to send me to a tiny room where no one will see me and do a pretend job? I feel completely demoralized.

It's been seven years since my baby brother died on the same day as one of my best friends from college

2009-04-29T22:35:00.003-04:00

This is what I said at his funeral:
I love my brother Tim as I know may of you did. He was a passionate, creative, giving person. I never thought I would have to say goodbye to him so soon. He helped me to learn something very important though. When we were growing up we learned a lot from our parents about expression and words and work and life and laughter and art and literature. But unfortunately I feel we were only really taught one way to deal with the problems and suffering, one expression or feeling to capture the myriad and range of emotions available. That reaction was anger. When the anger became too much we all learned to numb ourselves from pain in one way or another.
Over the years I have struggled against the numbness I felt. There were times when it was much easier to shut myself off from the pain or discomfort some of my brother’s choices left me with. He could be so generous and so giving and then become so overwhelmed by life he was just not there. I felt my heart hardening against whatever I anticipated the future might hold for him. Then recently, in the last year and a half, I began to discover that there were other options. I did not have to feel just anger or nothing. My relationship with Tim in these last 18 months grew to a new level. I let myself love him fully for everything he is and could be. I accepted him and felt protective of him in a way I never had before.
He too loved and felt passionately about life. The last time I saw him he seemed so happy. We had something in common. We had both found a person we could love and let love us and to share our lives with. He had just spent two weeks snorkeling in Puerto Rico with Lauren and he was so in love. He kept saying to me “Who would have thought?” and I had to agree. Who would have thought that the two of us could be so lucky? He really lived.
I want to read something he wrote:
“Down through the depths of inner sanctuary, caught in the vortex of immobile sleep, I dreamt of a place where all men go. I am from that place and I find it unworthy. I am Narmidian, the sailor. I have been around the world in the course of several minutes. With this there seems nothing to hide from, no demons, hells, no fears that creep out in the middle of the night, and in a sense that is the most fearful existence of all. For what is the true purpose of living except to enjoy the moment, and how to enjoy the moment without ruining the future, and if so what other alternative is there? I can see none, for all mysteries fade before the utter truth of simple boring life and no one who desires fantasy wants simple life.”
Because of Tim and Matt and Suzy, I love children. We had some wonderful times together as children. He also had a amazing connection to my daughter Sachi from the time she was born. They seemed to recognize each other from a long time ago. My stories about him and my brother and sister have become part of the fabric of my teaching style, my way of relating to children, my life and I want to say thank you to him for that.
When we were kids there was a huge snowstorm in New York one winter. The schools were closed and Matt and Tim and I went to the park together. Matthew, always the adventurous one, convinced us to jump from the high brick wall separating the different levels of Riverside Park. He said the snow was so deep it would catch us. We sat on the wall and looked down and it seemed much too far. Tears started to run down Tim’s face. Matt said let’s jump and he did landing in a roll and laughing. By then Tim was really crying. I knew I had to jump next or I would lose my nerve. My foot got caught in a vine and I fell head first. Still I landed okay although much harder than I had expected. From down below we egged Tim on, “JUMP! JUMP!” we shouted over his wails. Trembling and sobbing he finally did. And then we all laughed together. Years later I realized that he was the bravest one of all of us because real bravery is to do what you are afraid to do.
I will miss his hugs more than anything. He had a way of holding me that made me feel like I was home. I know I will see him again and I look forward to it.

And the poem from Sachi:
I wanted to write something to say everything I felt.
But nothing sounded right.
Writing this now, I can see no words to describe you.
There are no words, only images in my mind.
Swirls of brilliant color, crazy painted graffiti, moving faster and faster
Powerful images, rushing through walls that can’t take the blows fast enough.
You were magical, fierce, art flowing over the heads of all who knew you
Zooming down New York City streets
Enveloping me in the swirling arms of a bear hug
Melting, pouring, endless movement.
You lived fast, never ceasing to amaze me.
Creativity poured out of you like paint,
Flowing fast and drying onto sidewalks
Oozing out onto the feet of everyone who saw.
Affecting the lives of so many.
And yet, so few of us got to say what we really wanted to say.
You were too quick for us, passing each of us in a flash
One single moment of brilliance
If you don’t say it now, you might never get to.
Well, I didn’t get to say it one last time, but I’ll say it now anyway.
I love you.

To sleep, perchance to dream

2009-04-29T06:58:00.005-04:00

I am too afraid of the prospect of taking a medical leave from work. I am afraid I will not get my job back. I am afraid they are only offering it so I never come back. I am afraid that I will never have a regular salary and health insurance again. I am afraid I will miss it. I am afraid I will become even more insignificant than I am now.

My sister says, "Sleep! Jill Bolte Taylor says the brain needs sleep to recover." I am more creative with rest and so if I sleep, I can dream and the possibilities could break through into this world. On the other hand as my title infers, the sleep could bring no relief and the dreams could penetrate the respite with more anxiety of the loss and change.

On a totally unrelated topic, check out my handsome husband back when he was a youngster in his twenties:

{∞} Touchless Bouyant Infinite hug

2009-04-18T06:43:00.003-04:00

My blog reading includes:

My Tough Boy Initiative

She just describes my feelings so well at times so I sent her my new TBI acronym.

The opportunity to write the word

2009-04-17T06:13:00.002-04:00

SCHADENFREUDE

link to article about the neuroscience behind it

I always forget what it means. Maybe it's the shady part.

Sometimes when you lose....

2009-04-17T06:07:00.001-04:00

...something, you do not realize it is missing until you need it.

What a world! What a world!

2009-04-16T18:27:00.012-04:00

I'm melting.

Walking home from conferences where most parents are happy to hear they have a great kid but some are fixated on HONORS MATH.

I stop at the supermarket and hear a father tell his much taller teen-aged son that he is selfish for choosing a $5 box of Fruity Pebbles not on sale, as the box glides by ostentatiously next to generic white bread, generic hot dogs, generic OJ, and generic cheese.

I feel unbearable sorrow. Yes, we all want to do a good job, to be liked, to not be selfish.

Inevitably, some of us fail.

Why?

2009-04-12T22:54:00.007-04:00

Summary of Previous Four Years

2009-03-29T10:01:00.003-04:00

1. I began to teach myself to draw and paint.
2. I took a mixed media workshop in the Berkshires two summers in a row with great success.
3. I traveled to China with a group of teens.
4. I traveled to Japan on a grant from school to visit math classrooms.
5. I began knitting again and started a knitting circle in my home.
6. I went skiing with three girlfriends for a long weekend.
7. I had a best friend who dropped by so often my husband nicknamed her Kramer.
8. I had a stroke which an MRI revealed was from a tumor.
9. I had a craniotomy.
10. I walked every day for 15 minutes building up to a full hour.
11. I entered an invention contest and a postcard contest.
12. I lost both contests but was very proud of my accomplishments.
13. I returned to my job and discovered I had cognitive deficits.
14. My communication skills caused many misunderstandings.
15. My boss died alone on Christmas day.
16. I designed, organized, and helped make a memorial afghan for her.
17. I printed raffle tickets for the afghan and sold them earning over $3000 for a scholarship fund in her name.
18. I was diagnosed with a traumatic brain injury, with disabilities in executive functions, working memory, language, timing, and planning.
19. I was demoted at work and asked to move to a smaller room away from all of my colleagues.
20. I was granted the use of an assistant enabling me to continue teaching.
20. My daughter graduated from college and moved back home.
21. My father, Edgardo Vega-Yunque´ died.
22. I rented a studio to handle my father's enormous collection of books and writing.
23. I went to court to handle the estate.
24. I arranged for a memorial funeral for my father.
25. I donated all of his belongings to El Centro for Puerto Rican Studies.
26. Through therapy and rehabilitation, I learned new methods of communication.
27. Friends from work stopped socializing with me.
27. I have renewed some old friendships from college.
28. I spent part of my spring break in the hospital.
29. My art studio was finally completed so I could begin to make art.
30. My landlady told me she cannot tolerate my presence in the studio.

I love clogging!

2009-03-25T09:38:00.007-04:00

I love when I read the post of someone who left me a comment and see the wonderful connections to be made through the world of blogging. A typo caused me to write clogging. Yes, Irish dance has helped me to make great friends from many nations. JK! That'd be cool though. Travelin' on the reg! Dancin' on the reg! Stompin' on the reg!

This is from Wendy

I leave you with a favourite list of not only fasting but feasting at Lent (and even my friends of other creeds can appreciate these):

• Fast from judging others; feast on the Christ dwelling in them.
• Fast from emphasis on differences; feast on the unity of life.
• Fast from apparent darkness; feast on the reality of light.
• Fast from thoughts of illness; feast on the healing power of God.
• Fast from words that pollute; feast on phrases that purify.
• Fast from discontent; feast on gratitude.
• Fast from anger; feast on patience.
• Fast from pessimism; feast on optimism.
• Fast from worry; feast on divine order.
• Fast from complaining; feast on appreciation.
• Fast from negatives; feast on affirmatives.
• Fast from unrelenting pressures; feast on unceasing prayer.
• Fast from hostility; feast on non-resistance.
• Fast from bitterness; feast on forgiveness.
• Fast from self-concern; feast on compassion for others.
• Fast from personal anxiety; feast on eternal truth.
• Fast from discouragements; feast on hope.
• Fast from facts that depress; feast on verities that uplift.
• Fast from lethargy; feast on enthusiasm.
• Fast from thoughts that weaken; feast on promises that inspire.
• Fast from shadows of sorrow; feast on the sunlight of serenity.
• Fast from idle gossip; feast on purposeful silence.
• Fast from problems that overwhelm; feast on prayer that sustains.

May FAST and FEAST be not just for 40 days of Lent, but become a way of life for each of us! Wishing you a beautiful Lenten journey towards Easter!

Grace and Peace,
Wendy

Thank you Wendy! Today I shall feast!

Dear Mr. President

2009-03-25T09:20:00.002-04:00

I wrote a letter to the president today? I know. Me? Political?

I was going to post about the circumstances that are discouraging me from going to my art studio, namely my landlady's nasty comments about the state of chaos which inspires my best work, but my new attitude it to step back and let the bullets land at my feet. I am Neo from the Matrix. I can see, hear, and think in slow motion. I am also one bad-ass motha who don't take no s--t from nobody!
So here is my letter. I am a little embarrassed about it so if you have any criticism, keep it to yourself. I'm not even sure what I would do if I was given the opportunity I proclaim so boldly to want.

Dear President Obama,
You have inspired me to believe in the Democratic process again so I am writing to ask about a policy that affects our nation and me. As a product of the New York City public school system, I was fortunate enough to attend an Ivy League college on scholarship. As a young single mother in my 20’s, my career choices were limited by the exorbitant cost of daycare and my liberal arts BA degree. I became a teacher in a New York City private school. I love my job and I am passionate about education.
My daughter just graduated from Harvard and I was able to afford to save enough to cover about half of her tuition (which was huge for me and made me proud to give since I had attended for free). My plan was that once she graduated and was on her feet, I would use what was left of my investments to finance my own master's degree so that I would qualify to teach in a New York City public school. Well, as you know, thanks to the economy you inherited from the previous administration, my savings are nearly worthless. I am leaving what little is left in the stock and bond markets because I do have faith that your plan will work. Fortunately, my daughter found a job, but it does not pay well enough for her to afford health insurance or housing yet, so she is living with me again.
My question is this: why are experienced teachers excluded from applying for the Teach for America or Teach for New York programs? Under these programs, young college graduates can get free higher education classes in exchange for a commitment to work three years in the nation's most poverty stricken or poorly performing schools. I have twenty years of teaching experience and would be of great service to such students but I am ineligible for the program for the very same reason, I would be of particular help.
I do not know how successful the program is or even how the success is measured. My resources are limited to anecdotal information provided by my daughter's contemporaries. Most found their experiences to be extraordinarily difficult and will probably not remain in the field of education. I, on the other hand, am a career teacher. I am committed to giving every child I meet an awareness of one benefit of being an American and separates us from so many other countries. Education is free and if a child can take full advantage of it, he or she can break the cycle of poverty and improve his or her social standing much like I did.
As I said previously, this is a question very specific to me and I am but one of your constituents. I would like to know why my experience teaching for twenty years prevents me from qualifying to apply for a program that gives free certification in exchange for making a commitment to our nation's neediest schools. I have to add that I teach middle school math and have an outstanding record of inspiring many of the most reluctant learners to go on to earn A's in high school and love math. I am an advocate for women in math and highly gifted math students of both genders (truly one of our country's greatest resources) but also for all children. Despite the fact that I am not a leader or principal, you inspire me to listen more closely to others and this has been a tremendous gift.
So what do you say, Mr. President? Do you think that experienced teachers should be allowed the same opportunity to offer their services in exchange for higher education? I voted for you (after Mrs. Clinton was out of the running, sorry) and I would do it again. Can you explain the reasoning of a policy that imposes a self-defeating limit on an otherwise excellent program?

Thank you for your bravery and vision!

Your loyal citizen,
Aly ....

Help Me!

2009-03-14T19:25:00.002-04:00

Everything I say is taken the wrong way. My efforts to clarify are futile and I am accused of being long-winded, befuddled, paranoid, overly sensitive, repetitive, and overly emotional. Why don't I just listen for a change?

The problem is when I asked for clarification, it turned out I was right. How can people tell me in the same breath not to read so much into something while revealing at the same time the giant can of worms under all those calm words? Oh yeah, don't be so paranoid, but there is a SUB-TEXT we have kept from you. Let's not dwell on it!

March is Brain Injury Awareness Month

2009-03-08T09:39:00.004-04:00

As a child, I had a concussion. At 23, while pregnant with my daughter I was in a head collision. The fact that I was not wearing a seatbelt probably saved her life, but my face flew into the seat in front of me. My glasses cut into my nose and cheeks and I had two black eyes. I was clumsy and impulsive as a kid (well as an adult, too). I fell a lot (on the tennis court - staples in the back of the head, on my face going back to bed - ten stiches in my chin, running for a train - bruised face, bloody knee). Two years ago, I had a stroke:

During the angiogram and news that I had a brain tumor, all I could think of was Turks and Caicos. This is an oil pastel/collage of my experience.

I read a few regular blogs. My Google Reader collects them for me and I wait until I have at least 45 minutes to look through my favorites. One is Broken Brain, Brilliant Mind and in this recent post, I saw my life. It was so bizarre because until I hear the words for some experiences, I am not even sure how to articulate it. A year ago, I stayed up all night to pack for spring break and got there with so much strange stuff and some very obvious items lacking.

My new resolution is to be positive! If people want to remain ignorant, they can go suck it. I am not going to make it my job to educate them. I have enough of my own work to do and my own obfuscation to clear up.

Eschew obfuscation and make choices that make me happier! From now on when I get a compliment on my work from the parents of my students, I am going to ask them to put their words in writing and send them to my boss.

I love my students! My favorite part of teaching is the Aha! that follows confusion.

Blogging is Narcissistic

2009-02-23T18:31:00.005-05:00

Today I left one of the few places I still felt accepted in tears. What the hay? My brain injury support group was discussing the web and social alternatives. I go to the group because I read that I need human contact. I feel alienated because I rarely see friends. At work, I am up on the fifth floor so no one seems to remember that I am there. Or they remember but what they remember is post-injury and it does not seem worth it. Who knows? I am on a new campaign to be me, to be what I'm like, to be like myself, and so I'm having a wonderful time. Ooops! They Might be Giants tangent. My former student Roman comes to visit me. He is awesome! He brings hilarious clips from Conan or Leno for me to watch.

So why did I walk across Central Park from the east side today with tears and snot running down my nose? Fatigue? Hunger? My assistant upon whom I depend a lot these days was out today? Also, last week my request for sensitivity training for my colleagues was denied and I was strongly encouraged not to remind anyone about my injury. So then today when someone requested that maybe my assistant just fill in for them when they have a doctor's appointment, I felt annoyed. Her aid enables me to do my job and still only about 1/2 as well as I used to do it. She is not a luxury or a floater. Whatevs. Dark, dark, dark! Back to the support group...

Facebook, text messaging, etc. were the topics. When blogging came up, I shared that I started mine to keep friends and family up to date on my medical status after my stroke and before my surgery. THE SUPPORT GROUP LEADER said that it seems kind of narcissistic to keep a blog. Like, what makes anyone think someone wants to read what they have to say? I reiterated that my purpose, expectations, etc. and she said so if you are talking to a guy in a bar and he says he blogs, you should walk in the other direction. I said, "Thanks a lot!" and she said but you know what I mean?

Yeah! I am a narcissist! I hope everyone reads my blog! Maybe I will win the Blog of the Year Award! Is there a Blog Pulitzer? Am I on the New York Times best read blog list?

Four is my lucky number so...

2009-01-18T02:10:00.003-05:00

... when I read this blog post over at Cornflower Blue Studio asking anyone to play along I decided I would go for it. The fourth photo in my fourth folder is this one
Since Ed died, I have so many pictures I had not seen in a long time. I am scanning them because I guess they are not really mine. I guess I will give them my mom or the subject (in this case my brother Matt). I feel so much love for him right now, just flooding feelings of appreciation and nostalgia and compassion.

He asked me a really interesting question after I tried to explain why I love teaching. I love teaching because I remember what it felt like to be a kid and so I am an advocate for them. I have my own personal reasons for why I loved school.
1. It wasn't home.
2. Nobody yelled at me.
3. Every day was pretty much the same.
4. The rules and consequences were clear.
5. I was good at "appearing to follow the rules."
6. There was food there.
7. If you needed a pencil or tape, it was always where you expected it to be.
8. A big part of the day was spent doing one of my favorite things in the world, reading.
9. The people there wanted me there. Or at least it seemed that way since they asked every day if I was there.

Are these good enough reasons to be a teacher? I don't know.

Have You Ever..........

2009-01-08T22:19:00.003-05:00

I saw this at the fluffyknitting blog and thought it looked like a fun thing to play along with!

The things I've done are in bold.

1. Started my own blog
2. Slept under the stars
3. Played in a band (orchestra, fife and drum corp)
4. Visited Hawaii
5. Watched a meteor shower
6. Given more than I can afford to charity
7. Been to Disneyland/world
8. Climbed a mountain
10. Sung a solo
11. Bungee jumped
12. Visited Paris
13. Watched lightening at sea
14. Taught myself art from scratch
15. Adopted a child
16. Had food poisoning
17. Walked to the top of the Statue of Liberty
18. Grown my own vegetables
19. Seen the Mona Lisa in France
20. Slept on an overnight train (a red eye from Boston to New York)
21. Had a pillow fight
22. Hitchhiked
23. Taken a sick day when you’re not ill
24. Built a snow fort
25. Held a lamb (I wish!)
26. Gone skinny dipping
27. Run a Marathon
28. Ridden in a gondola in Venice (lived in Venice, CA and rode gondola in Vegas)
29. Seen a total eclipse
30. Watched a sunrise or sunset
31. Hit a home run
32. Been on a cruise
33. Seen Niagara Falls in person
34. Visited the birthplace of my ancestors
35. Seen an Amish community
36. Taught myself a new language
37. Had enough money to be truly satisfied
38. Seen the Leaning Tower of Pisa in person
39. Gone rock climbing (indoor)
40. Seen Michelangelo’s David
41. Sung karaoke
42. Seen Old Faithful geyser erupt
43. Bought a stranger a meal at a restaurant
44. Visited Africa
45. Walked on a beach by moonlight
46. Been transported in an ambulance
47. Had my portrait painted
48. Gone deep sea fishing
49. Seen the Sistine Chapel in person
50. Been to the top of the Eiffel Tower in Paris
51. Gone scuba diving or snorkeling
52. Kissed in the rain
53. Played in the mud
54. Gone to a drive-in theater
55. Been in a movie
56. Visited the Great Wall of China
57. Started a business
58. Taken a martial arts class
59. Visited Russia
60. Served at a soup kitchen
61. Sold Girl Scout Cookies
62. Gone whale watching
63. Got flowers for no reason
64. Donated blood, platelets or plasma
65. Gone sky diving
66. Visited a Nazi Concentration Camp
67. Bounced a check
68. Flown in a helicopter
69. Saved a favorite childhood toy
70. Visited the Lincoln Memorial
71. Eaten Caviar
72. Pieced a quilt
73. Stood in Times Square
74. Toured the Everglades
75. Been fired from a job
76. Seen the Changing of the Guards in London
77. Broken a bone
78. Been on a speeding motorcycle
79. Seen the Grand Canyon in person
80. Published a book
81. Visited the Vatican
82. Bought a brand new car
83. Walked in Jerusalem
84. Had my picture in the newspaper
85. Read the entire Bible
86. Visited the White House
87. Killed and prepared an animal for eating
88. Had chickenpox
89. Saved someone’s life
90. Sat on a jury
91. Met someone famous
92. Joined a book club
93. Lost a loved one
94. Had a baby
95. Seen the Alamo in person
96. Swam in the Great Salt Lake
97. Been involved in a law suit (class action?)
98. Owned a cell phone
99. Been stung by a bee
100. Rode an elephant (my mom did)

The Yorkie Connection

2009-01-05T23:18:00.006-05:00

Twenty years ago in my very first teaching job, I had the best mentor ever. She was a dynamo and she guided me the same way she taught. T. helped me become the teacher I am by setting a great example, letting me make mistakes, and allowing me develop my own style. When a class begins, I still say "Let me see who I can thank for being on the ball?" as I look around a group of students in varying states of readiness. Even though these are sixth graders and those were first graders, everybody wants to be noticed for the positive and they all get ready. I have so much I wish I could tell her. Today I saw a postcard she sent school with her beautiful twin boys and her two Yorkies. She has Yorkies! I can't believe it. I have her address so I think I will write to her. I came home and googled her so for now here is a link to an article about her.

T. and her school for living graciously

Thelma T. Hanawalt's business, called 'Mrs. T-s Tutorials,' offers lessons on manners and academic subjects.
Amazingly, just last year when one of our former first graders Melissa C. became my assistant because of the brain injury, I found a copy of T.'s "Signs of Civility" and hung it on my wall. I really try to be a nice person.

Here is my Yorkie Lily with me at one of my favorite places in the world , discussing my art with the rest of my class.

The Holiday Season

2009-01-03T02:42:00.002-05:00

I hope your Christmas was better than mine. That year anyway, This year was fun. Check out my sister writing about my best New Year's Eve parties.
NYTimes blog
Coincidentally, they were her faves too. Amazing that they were able to beat out the year we went to Susan Sarandon and Tim Robbins's party. I brought in the new year playing foosball against Tim Robbins' college roommate. Woo hoo!

The Arm of the Oracle

2008-12-15T19:16:00.002-05:00

My walls of denial are crumbling. I cannot do what I thought I could. I also really need help from others. The only problem is what. What do I ask for? How do I ask for it? I was a very independent, stubbornly resistant, able to do it all kind of gal. Now I really need other people but I do not endear myself to my helpers. I talked with my CR doctor. I think it is a big step to even admit that there is a problem.
So as I was leaving her office I slipped and I was about to go flying onto the sidewalk but there was a woman in front walking by and I reached out for her to steady myself. She was so far away, but she stuck out her arm and braced herself to be grabbed. It worked and I held her arm. I did not fall. I was amazed because these things seem to happen in slow motion and I never think I am going to hit the ground.
I thanked her profusely and she yelled at the doorman about how I almost killed myself on his slippery doorway. And then I realized the synchronicity of realizing I need help from other people but am not clear with them about what it is I need and physically reaching for an Oracle from the Matrix resembling lady whose red down jacket enclosed arm was there. She saw what I needed and she gave it. I need to make my needs clear and thank the people who do for me what I cannot do for myself.

The Funeral

2008-11-25T13:05:00.002-05:00

My father Edgardo Vega Yunqué will be laid to rest at Calverton National Cemetary this Friday at 1PM. He served in the Air Force towards the end of the Korean War. He was stationed in the Azores and learned Greek and Portuguese. He referred to it in a journal as "three years of total decadence." He operated the radio, hung out at the beach and drank with the ladies (some perhaps shady). Then he returned to the States and fell in love with my mother. He was only 25 when they got married. It must have been some contrast.

He was not a patriot. I am not sure he would choose to spend eternity buried amongst his fellow serviceman but he didn't leave any instructions so I made the choice. He insisted we speak English and that we do so very well. Spanish was never spoken at home. He married an American woman and produced three pale children with blue eyes and straight hair. He preached independence for Puerto Rico but he did not raise us to be Puerto Rican. I think he really did love America. He just did not like that he was not 100% accepted as American. It was a shock to him in 1954 to get on the train to South Carolina heading for basic training and be told that he needed to be in the last car with the colored enlisted men. The Irish kids in his neighborhood in the Bronx never let on that he was any different from them. He was always grateful to the Irish for that.
Maybe we can get them to put McVega on the headstone?

Aly's Angioma is Now Amiss: The Beast

2008-11-23T21:13:00.000-05:00

Aly's Angioma is Now Amiss: The Beast

The Beast

2008-11-23T20:59:00.003-05:00

Hamster On A Piano (Eating Popcorn)

2008-11-23T13:45:00.001-05:00

I cannot get this out of my head. I sing it all the time. I love you Hamster On A Piano!

I hate my brain injury!

2008-11-11T19:01:00.003-05:00

I was having such a good week and now I feel crappy. Why can't everyone just leave me alone and let me do my work? Do not write me long, complaining emails about brief conversations about which I have no memory.

I am not a bad teacher even though sometimes I lose things or plan on the spot. I can improvise because I know the topics inside and out. Leave me alone or better yet just come up and watch. My door is always open and a piece of paper ain't gonna tell you what I taught. I have been driving off road for the last 18 years. There is no map for it.

I wanted to go to my studio to work on my art today but the emails were too time consuming and enervating. But check out the piece I am working on. It's not done but it is part of my "World at my feet" series. I think I will call it "If he were meant to fly..."

What remain"ed"?

2008-11-09T11:22:00.009-05:00

My father's cremains arrived yesterday while I was seeing my cognitive therapy doctor. There is a lot of overlap between emotional issues and cognitive dysfunction these days. I am doing my best to get enough sleep, exercise, and food these days. That way I know at least when my response to a situation is inappropriate we can rule out any of those problems. Plus, they help maximize my brain functions and emotional disregulation. So, Dr. S. thinks let’s deal with the death stuff there and I will focus on the time, memory, talking, language misunderstanding, and brain injury stuff to Dr. K.

I am perhaps obsessing over my father's death. My musings change neither his life nor the choices I made while he lived. Some time before my surgery I stopped fearing death because I realized I would not know if I died. I would only be aware that I was alive because conscious thought is part of life. I was so pleased to come across this article.

I have temporarily placed my father’s cremains (such an odd word) next to Suki’s on the windowsill in my living room. His funeral will be held later this month and the cemetery does not store cremains. Ed liked cats so he and Suki can bask in the sun together. Suki only lived at home with me for the summer between junior and senior years at college. Ed put her under a broken 5-gallon glass water-cooler bottle to just see what she would do and she cut her nose trying to crawl under the tiny edge. Suki spent that summer hiding under the bathtub because Sabrina stalked her. Ed discouraged my attempts to make any modifications for her because "animals adapt" or "natural selection means the strongest survive" or some other stupid shit. I just wanted to feed her in a different room so she could eat in peace. Instead, she ate in the bathroom with the panicked urgency that the wrath of Sabrina was about to befall her. She can tell him her story.

Right out the window, he can see 240 West. We left in the middle of the night when I was 16 because not paying the rent had caught up with us and we were about to be evicted. He told us it was better because there were too many ghosts there. I loved that apartment. I left behind so many books I still wish I had. Ed can reflect the place where he raised Suz, Matt, Tim, and me with our mom Pat, and he can visit those ghosts he created.

Raised is not the right word. He reared us? Attempted to raise us to the best of his ability? My sister's tribute at his memorial showed homage to positive and there were many positives. There were also drastic measures he took to force conformity to the ideals he imposed on us. As extensions of his extremely narcissistic self, his children could each act out fantasies that he could not. He was very proud of the fact that despite brown eyes and curly hair being dominant traits, we all had blue/green eyes and straight hair. We had to speak perfect English. In the guise of WASPs we could go where he could not. He liked to call me his "Cliffy" even though when I actually learned anything in college that contradicted his doctrine, I became the kind of loathsome Cliffy who would have looked down on him. He both hated and loved this country. He wanted us to be all of the icons he revered but pretended that he hated for their exclusivity. Matt was supposed to be a professional hockey player. I was supposed to be the screen actress Ali McGraw or Candace Bergen. Funny, dramatic, all-American. He used to get very annoyed at me when my glasses slipped down on my face. Like him, I have no semblance of a bridge on my nose. It never made any difference to me but it seemed to emphasize the wideness and remind him of what he thought was ugly in himself. It was as if I was mocking him by letting my glasses slide down on purpose. I don't know. I actually grew up thinking I was ugly because of those features.

I love aging because I feel like I do not have to worry about whether or not anyone thinks I am attractive anymore. Who I am is much more about what I do and say. What was I thinking in this picture? I know it is probably my lunch in the bag but I am imagining it is something different because my face is saying, “I have a secret.”

The Brief Wondrous Life of Edgardo Vega

2008-11-03T23:22:00.004-05:00

He was on page 16 of the Pulitzer Prize winning novel by Junot Diaz. Irony? He had written his agent's number on a napkin in legible handwriting. He had a box cutter and some money, three loose keys, about 25 of his own business cards. Where was he going when he fainted? He had some glucose tabs and that was it. No wallet. No cellphone. The box cutter was to clip the baseball standings from the paper. It is such a shame. His mind was still so sharp. He had so many words to say and now his voice is silenced. Yesterday the sparrows were chirping up a storm in this one tree and even though it was so long ago I still remember Steven King writing that sparrows are psychopomps, harbingers of the dead. So I listened to them. I listened for Ed's voice, for a sign, a message. I think he might have said, "Don't return my cable box yet. The Rangers are on a roll."

Reading my dad's book: Omaha Bigelow Nov. 15

2008-10-26T08:04:00.006-04:00

Voiceover

A public intervention by Nayda Collazo-Llorens
October 25 – November 16, 2008
Viewable from dusk until midnight, Thursdays through Sundays
Opening Reception: Saturday, October 25, 2008, 6PM - 8PM
Artist's talk: Saturday, November 8, 4:30PM

Tribute to Edgardo Vega Yunque: Saturday, November 15, 3PM - 7PM

*Please note that there will be a tribute to Edgardo Vega Yunqué who recently passed away. The homage will take the form of a continuous, non-stop reading of The Lamentable Journey of Omaha Bigelow into the Impenetrable Loisaida Jungle, one of the most recent of the accomplished author's 18 novels.

MediaNoche, Manhattan's Uptown gallery devoted to new media, presents Voiceover, a site specific public intervention by Nayda Collazo-Llorens.
A constant flow of text moving across the storefront windows of MediaNoche engages the public to explore aspects of memory, language and displacement. Viewable at night from the street, nearby buildings and passing trains on the overpass, Voiceover is a non-linear textual piece
projected onto the windows of the gallery, located at the Northeast corner of Park Avenue and
102nd Street.

A lyrical, textual composition, Voiceover is based on Collazo-Llorens' research of the archives and oral histories section of PRdream.com, a web site on the history, culture and politics of Puerto Rico and its diaspora. Fragments from these oral histories are combined with texts from public spaces, literature, the media, as well as the artist's own writings.

The projected words become transmitted signals, simultaneously truncated and expanded, pointing to multiple narrators while triggering viewers to connect to their own experience. The ephemeral quality of the projected light and the fleeting texts suggests the fragility and transient nature of memory and story telling.

ABOUT THE ARTIST:

Nayda Collazo-Llorens was born in San Juan, Puerto Rico, and is a visual artist based in New York City and Pittsburgh, Pennsylvania. She received an MFA from New York University in 2002 and a BFA from Massachusetts College of Art, Boston in 1990. She works in various media, including works on paper and canvas, video, and installations, exploring the way in which the mind processes information.

MediaNoche, a project of PRdream.com
MediaNoche is the place where art, technology and community converge. We offer artists working in new media exhibition space and residencies in order to provoke a dialogue that blurs all lines of marginality and alternity. Unique among arts and technology groups in New York, MediaNoche is directly linked to the oldest Latino community of the city, Spanish Harlem, and has showcased a roster of local and international new media
artists.

TMV

2008-10-19T16:15:00.001-04:00

Reply to: I'm trying to see the negative...

2008-10-16T17:08:00.005-04:00

That sounds so interesting. I am trying so hard not to see the negative in everything but it just keeps sneaking up on me and biting me in the ass.

Negative

2008-10-14T14:34:00.003-04:00

You can hardly tell because I underexposed the photo of In His Footsteps 1 but the tiny negative at about 4 o'clock is from a photo of Tim and me. Tim and I are standing in the kitchen on East 109th Street and I have a stocking on my hand, fingers stretched to make it sheer. It is a photo I used in another piece I made right after Tim died. It was that photo behind a rainy window with the caption "Sometimes I feel like I am a ghost." The weird thing is that one frame of a negative was on the floor of my dad's storage unit when I was there yesterday. I don't know where it even came from.

Insominia: No one can spell at that hour

2008-10-14T02:53:00.003-04:00

This is "In His Footsteps 1"

Finally worked on some art

2008-10-14T00:10:00.002-04:00

My life is turned upside down. I am back to school and apparently no easier to work with than last year (or maybe that is just how it feels). My apartment is filled with mysterious papers from my dad's files. I am trying to piece together what he did to end up where he did. It seems he saved everything he ever had in his entire life or at least the cord for it. Cords and wires wrapped up in duct tape. Attempts at an effective filing system, abandoned for handy spots to put things, and everywhere amongst bank statements, ideas for writing, phone numbers, or receipts, a few photos were randomly inserted: me, puppet shows, Tim's memorial, his southern girlfriend, contact sheets of his head shots. It is so sad that he could not just behave himself. I feel that way. I just need to exercise some self-control, some discipline but ... I read about organizational strategies, know that I need sleep for my brain to heal, should not buy any more small bags for sorting things, and yet chaos reigns supreme! No I will not give to being a grown-up. Set limits for myself? Bah! But my dad, oh me, oh my, the floor sweeping robot machines are kind of cool. He fell for some stupid, fake debt consolidator company pretending to be a trust that would help him but just took his money. He did not eat the way the doctors told him to for his diabetes. He did not fill his scrips for lancets and he had a blood glucose kit that was a year old that looks totally unused. I have to go to bed. I will take a picture of my art tomorrow. I think I might call the piece "In his footsteps."

Rememberance: Unprepared and Late for my Dad's Service

2008-09-17T03:16:00.000-04:00

It was typical that I should attempt too much for the memorial service. I insisted it was all vitally important, rejected suggestions for simplification, thought I might even make it to the funeral home to get the death certificate and then Brooklyn for the mail while printing the programs, editing the slide show, writing my speech, and collecting a guest list to use to issue tickets for the reception (tickets because? well I thought hoards of strangers, possibly crazed fans of my father's writing or worse heckling enemies would show up and then we would not be able to keep them away}.

Okay, so I did not fail exactly. I got there... with about a quarter of the programs we needed, not all of the names from the meticulously collected list, no speech written, and half an hour late. But I guess it was okay. It reminded me that I have limitations.

I want to try to capture what I said about my father here. It was amazing speaking directly after my sister because our experiences were so different. We may as well have been living in different houses. Four people spoke before her and no one came out and said anything negative or surprising including Suz. All they had to say was, "Well, you know Ed..." When Prof. Adorno described him as highly opinionated I actually laughed because it sounded like an understatement. It got me thinking about whether anyone could understand what it was like to be raised by such a man.

My sister's speech was so great. I have to get a copy. Nobody seems to know why Ed was so angry. I've asked everyone in his family and they all had different answers. Racism. He thought he was white until he joined the air force and had to sit in the back on the trip to South Carolina for basic training. That was in 1954.

So back to my speech. My sister's concludes with a brilliant quote about when a man dies part of mankind dies. This after memories of all of the brilliant topics Ed taught us. I must have been spacing out during those times because all I remember were the bizarre confusing statements he made and that I took them as absolute truths because he was my father and he was smart and always right. Suz kept saying he taught us about astronomy, anthropology, politics, and not just like that but she remembers the specifics. I was shaking my head when she said he taught US, not us maybe you. That stuff flew over my head or I was too busy fantasizing about my real parents coming to pick me up and bring me back to the palace where I was supposed to live as Princess Arena. I had never heard the name Serena and the sound of the words Princess Arena were like silk the way the slipped together so smoothly. So when I get to the podium with my bare bones outline of an idea, I was relaxed and kind of amazed that my memories are of the book I said I would write some day called The Sayings of Chairman Ed. He thought it was hilarious and a great idea. The Collected Quotes of Chairman Ed.

1. Stop throwing like a girl. I tried. I did everything I could to use my whole arm, to imitate that motion he and my brother's used to get the ball to sail long distances and with great force but I just couldn't do it. First of a I am a girl so that made it a strange thing to say. Also I have since learned that besides my complete lack of ability to translate any sort of oral direction of what my body is supposed to do into actual motion, girls do not have the same bones and muscles boys have.

My insomnia is wearing off I will continue tomorrow.

The memorial...

2008-09-16T00:28:00.000-04:00

Now the sadness is crashing into me like waves. That crazy dad of mine is gone. His bag with his book and Tom's number written on a napkin. And the form checking in his belongings inverted the last two digits. His glasses in a bag and no signature on the form. Just the word "EXPIRED."

I am so sad and there were so many people there and I did not get to talk to them enough or thank them.

Writing about my father ...

2008-09-09T22:59:00.000-04:00

Edgardo Vega-Yunque chronicler-of-new-york-leaves-the-scene

This is the piece David Gonzalez of the New York Times wrote. My father fixed me up with him on a blind date once. All I remember was that he had big hair and made me laugh. He had this one source who was an addict or something and didn't get the concept of voicemail. So he would call David Gonzalez at the paper and leave messages that sounded like he thought he was being screened. "Yo man, pick up, pick up. I gotta talk to you." That story made me laugh. I was planning to go out with him again but then I met Andrew and passion ruled for awhile. I spent my weekends riding back and forth on the F train until Sachi broke her arm and my parents sudden, dramatic separation forced my mother to move in with us. Andrew, who had to be the center of the Park Slope party scene at all times, was crushed by the news of Sachi's accident. "I guess that means we won't be going out this weekend." And that was the end of that for me. Sounds callous but I realized I didn't want to go OUT ALL the time. Sachi and I had a wet tissue fight in the examination room while we waited for her cast and we laughed a lot.

In contrast to David Gonzalez's piece the Times put out an obit that turns my stomach about my dad. I did not get to finish what I was going to tell Bruce Weber and so I will write it here: Mr. Weber said he had been talking to the Clemente Soto folks and apparently he pissed some people off or as Mr. Weber put it, "So I gather your father was kind of a cantankerous man?"

This is what I was trying to say before I hung up, in my dad's last email to me he said: "I am a social rebel and sometimes my rebellion gets the best of me. I don't believe I can change and adapt myself to a world that stifles free expression." His free expression sometimes crossed lines and that did not fly with me. I tried to maintain a relationship with him but it was very difficult and I had finally let a man into my life for good. I was making progress and things were good. Brian, my love and ironically an Irishman, is a man who is happy to tell it like it is but he is well aware of who is going to get pissed off. My husband says , The only thing I HAVE to do in life is die," but he is there when you need him.

In the email from my dad he closed with this: "Be well and always remember that I love you always and as you said to me once: "I will always love you." On the last day of my life I will recall that memory and the one when you, at the age of four, asked me: "Daddy, what is he last number?" I said infinity and your mind, it seemed to me, went to the furthest reaches of the universe, examined my response and said, most naturally: "Oh, the numbers never finish."" There were things he did that made him impossible to be around but he was amazing too and I am sorry that I was not able to convey that to Mr. Weber in the obit. Also he would have hated his obit to read "Novelist of the Puerto Rican experience." He wrote about people, the human experience.

The Balloons

2008-09-08T00:24:00.000-04:00

“Well, I can’t really say that I respect writers. My father is a writer. He’s devoted so much of his life to it without getting a lot back.
“He’s treated many parts of his life as if he were writing them. He says whatever comes into his mind and then he thinks that he can edit it out later if he has hurt anyone. I know he also believes that because he says things, they will be so. When we were kids we believed him. He would say, next year we really will be living in a townhouse on Park Avenue. Write down the date. You’ll see. In exactly one year I’ll have sold a book... and so on and the four of us kids really believed him and we’d get so excited and happy. Year after year, we would get our hopes up only to be disappointed.
“One summer when I was about ten years old, my older sister and two younger brothers and I were all at home with my father. My mother was out at work during the days. My father would struggle in the summer with what to do with us. Sometimes we would go for weeks staying up until one or two in the morning playing poker with my dad and sleeping in most of the day. Mostly we sat around the house bored. Once in awhile he’d plan a great excursion and we’d set out on a quest.
“I don’t even remember what the goal was that day but we ended up at the Lincoln Center Out of Doors Festival. They give free concerts and performances and we saw whatever it was we went there to see. It was nearing the time to leave and one of us noticed that underneath one of the overhangs of a building there were trapped some twenty or thirty balloons. They were tangled together and seemed to be in two bunches with a large number of strings hanging down. Some of the strings were very long but mostly they were matted and knotted together in lumps and the lowest one was still twenty-five feet off the ground.
“We watched in helpless awe as my father attempted to snare the tethers with his huge bunch of keys. I don’t know why my father had so many keys but at the time I didn’t question it. At first it was exciting but after twenty minutes we all started to grumble. My father had us standing sufficiently out of the way so as not to be hit with the keys. It also allowed us the liberty to complain out loud about my father’s pursuit. ‘I don’t even want the balloons anymore.’ someone would say. And then, ‘Yeah, we should go home.’ and finally someone would counter, ‘But wouldn’t it be cool if he got them.’ And then we’d go around again. Forty minutes passed. We were tired of watching him and yet we could not stop. He had gathered a substantial audience.
“Just when everyone was about to give up on him, he snagged the balloons. The weight of his keys pulled them down and he grabbed one of the strings. Everyone shrieked with delight. My father is not a small man. Like an overgrown kid, he came running towards us. Out into the open courtyard he ran with a huge bunch of balloons. I couldn’t believe the pride and joy I felt after the frustrating wait. But something happened as he neared the middle of the courtyard. The balloons began to shift. It became quickly apparent that the one string that my father held was attached to nothing. And still he ran towards us. In slow motion all of the balloons escaped and my father ran towards us not looking back but pulling a string. In moments our joy turned to horror as all the balloons floated beyond the reach of anyone. The weight of the string and our facial expressions must have clued my father in. He stopped running and turned to watch the balloons float away. We walked home in near silence. Every so often my youngest brother would say, ‘He had them and then they were gone.’

May 20, 1936 - August 26, 2008

2008-09-07T01:06:00.005-04:00

My dad is dead.

It is very strange because like Meryl he was dead for so long before we found out. I spoke to the doctor who treated him in the ER and she gave me all the details. He was dead before anyone ever would have had a chance to be there with him or for him to give any contact info. They looked up some old contacts from when he was there two years ago and apparently numbers had been copied wrong. Fortunately when the case was turned over to the city those guys had the good sense to try directory assistance before he was buried in Potter's Field.

I am sad on and off. It is unreal. I chose not to maintain a relationship with him as an adult (although I tried briefly after my brother died, he was impossible). I think people need to be needed to live. He was not feeling very necessary. His last book was cancelled. I told him not to come to Sachi's graduation.

He fainted and woke up before the ambulance arrived. He said it happened before and maybe his sugar was low. The doctor told me he was calm and cooperative in the ER. He died once and she brought him back with a punch to the chest. When he came to, he asked what happened and she told him. "So I was dead? Wow!" The next time he coded, they could not bring him back.

They didn't do an autopsy but it was not a heart attack or his diabetes. They think he threw a clot in his brain or lungs. When he was in his forties, he had a similar experience to the one I had where he lost sensation and vision. He went in the hospital and they thought stroke. He was released and his sight came back. I think he had a cavernous angioma in his brain. They are hereditary especially in Hispanic families. He never had a CT scan or MRI. They didn't really have that technology back then.

I loved him even when though I should not have. He was a dangerous and destructive man. (IN THE YOUNG EYES OF A SMALL CHILD) Never confuse the art with the artist. He spun up a childhood for us and then edited as he went along removing the typos, egregious grammatical errors, and places where he dug his pen so deeply into the paper it tore. The result was a fantasy. It was lies but as beautiful and lyrical and seductive to a child as Santa Claus or the Easter Bunny.

It 's so sad. I wasn't even that great a student. I got good grades but I did not try very hard at all. Short cuts, that was how he always described my efforts. I didn't even want to apply to Harvard and I don't remember what my essay was about. For sure, he edited it to the point where it did not resemble anything I could have produced.

And then in college, I fell apart. I could not tell which world was the real one, the bedtime story indoctrinated into me by my father, that societal norms were to be rejected because they cultivated fronts and behind the falseness was something to be feared or the one I saw in front of me where despite their Judeo-Christian beliefs and waspy prep school backgrounds, everyone sure seemed a hell of a lot happier than me. I wanted what they had but I did what my father told me to do.

"How are you?"
"How am I? Fuck you! Like you even really care."

It did not win me many friends. I conformed and I felt broken in two, then three, then more. And now there are so many pieces all over the floor I don't even know where to put them. Truth? Value? Beliefs?

Labor Day weekend I visited some friends and I gave them a copy of Blood Fugues. (I had about five copies.) David was worried I had made a mistake because the copy I gave him was signed to me. I said it was fine. (And I still mean it - this is not a hint asking for it back!) The signature made it even more valuable and he could sell it on eBay. I think I even joked that it would be worth more when he died. He was already dead. (ACTUALLY, I VISITED MY FRIENDS THE WEEKEND BEFORE AND DAVID GAVE ME THE BOOK BACK THE DAY OF THE MEMORIAL AND I FEEL GUILTY ABOUT THAT.)

The World at My Feet

2008-09-06T12:04:00.000-04:00

Planning – Executive Function

2008-08-24T17:44:00.002-04:00

• I ask people to wait; I only need 2 more things, five minutes.
• When I find it each item, reminds me of another essential thing.
• I cannot plan because I cannot actually see more than one step in front of me at a time.
• Each object is a clue to the big picture.
• That is when I am lucky enough to convince someone to wait for me.

Sunday, August 24, 2008

Sachi and I decide to hang out on the roof and catch some rays.

“I am ready whenever you are.”

I put on some sunscreen. Offer some. Chat about Fire Island, Buck’s Rock, dinner, art classes. I look and find for the SVA catalog. Winter 2008 seems like the correct one. I’ll work on my found object project so I grab the container with those.

“All I need is thread then we can leave. Give me two seconds.“

“I really want to go. You said you were ready five minutes ago.”

I spot the thread and next to it is a pair of scissors.

Oops! Yes, of course I need those too and
(Oh, crap)…

“I know. I know, Sorry. I only need a needle now.”

“This does not sound like two seconds, I think you need a little more time. Can I help you? What else do you need?”

LOOKING LOOKING

I want to stop and ask for help because there is probably something else but… what?

LOOKING

It is hard to find because… I do not have my glasses on.

“Now, I just need my glasses.”

I suddenly see why I am always late. I don’t know what else I need until I find the first thing. The related things aren’t staying in my head with it. While looking for glasses, I am holding the thread, scissors, needles, fabric, etc. All the objects I have collected are in my hands so I do not forget to put them in the bag.

OR I set them down somewhere and then can’t find them when I find the next (if I remember that I even set them down; I could just leave without them)

BECAUSE if I stopped and packed them, the item I just remembered I needed (glasses) flies out of my head. Since the ones I had in my hand are packed I have nothing to remind me of the next and I go searching with no purpose and every single thing I touch has some other possible association. Now I have lost track of the purpose of my trip, where I am going, and why I even needed the thread, and I still don’t have the glasses so I am not finding sought object but I don’t realize why it is so hard to find.

AND all this while (if I am alone) it really does seem like just one more thing and only a few minutes so when I glance at a clock on my way out, I am stunned to find that 40 minutes have gone by and I now have 20 minutes to get to my destination 45 minutes away.
THEREFORE, I run out the door clutching a banana, glasses, three $20 bills, letters to mail, and a book (it could have been what seemed so important to bring). I drop all of them as I lock the door. I stop and throw them all in the bag loose (except the letters to mail because the box is right there) and for the rest of the day seem to be unable to locate the cash because I probably dropped it in the mail box with the letters. I am hungry and can’t buy any food but the banana is down there forgotten squashed under a huge pile of other stuff in my bag that I do not need.

Dreaming

2008-08-24T17:14:00.000-04:00

My sister says she never dreams at night
there are days when I know why;
those possibilities within her sight,
with no way of coming true.
Some things just don't get through
into this world , although they try.

-from Rosemary by Suzanne Vega

I think some things are coming through into this world. I think they tried so hard they had to break their way through. My head got a little broken in the process but the damage maybe gave me a different kind of sight. It is letting me see new possibilities.

Dreaming is not verboten anymore.