It's not what you said. It's just what my brain thought you said.

I find one of the most frustrating aspects of brain injury is the challenge of expressing the changes my brain has undergone. I see a cognitive therapist and it bothers me that I have to clarify my issues.

One issue with which I struggle is language processing. I told my therapist that sometimes I do not understand what someone says despite asking them to repeat it. She suggested I ask them to spell it for me. I could not explain why this does not help the words or their meaning get into my brain.

I once asked a lady where she got a lovely robe she was folding in the laundry room.  Master Whore on the street, is what I thought I heard. I knew that could not be right so I asked her to repeat it. I listened carefully, convinced that it was the word “whore” that was wrong. Master Borgas Street? I gave up and nodded. It was obviously not a place I could go. Hours later up in my apartment I replayed the conversation in my mind and then I said the words out loud. Duh! Where would you get a bathrobe? Victoria’s Secret!

A few days ago I was on a conference call with some members of the Brain Injury Association of New York City chapter. (Such a bad idea! People with BI on the phone with multiple other people with BI. Yikes!) The discussion concerned our choice of movies for an upcoming event, selected shorts or a full-length feature film. L mentioned a seven-minute film.

“Seventy minutes?” asked E.
“No. Seven minutes,” repeated L."70?""No. 7!"

This went back and forth until E. explained that it was easier for her to understand numbers if the other person said every digit, like seven – zero. Can you please say it that way.

Okay, said L, it is a seven-minute movie. E just kept hearing seventy.

“Seven – zero?” E kept asking.“No, seven!” L kept repeating.

It was frustrating to listen to the interaction but it made my own issue a little clearer. The misunderstood meaning had made its way into E’s brain and it was not going to change. She heard seventy and it was like she thought L was refusing to comply with her request to state each digit. As a result, she kept emphasizing SEVEN – ZERO, like she was telling L – please say it this way so I can understand you better. Eventually, she gave up and began to refer to the length of the movie as “a little over an hour.”

I am sure you can imagine what happened after that. Everyone tried to help her understand, all talking at once. It seems comical when I reflect on it. It is hilarious, even, in a who’s-on-first?-kind of way.

It makes me laugh because I'm relieved knowing I'm not the only one with this particular symptom of brain injury. I do not have the answer nor how my cognitive therapist can help me, but spelling does not make things clearer once my brain receives a scrambled message.

Dr. Schmahmann: The Cerebellar Cognitive Affective Syndrome

What up, Doc? Thank you for having better answers, Dr. Schmahmann.

This is a long video, but my favorite part is when he says:

It is not “in your head”, it is in your brain.

Ideas for future posts

Am I an artist or just a tool?

24 hours of BIMs (brain injured moments)

Mocking emails I sent when I thought I hit FORWARD but I really hit REPLY

Why TV characters make the best friends

Expensive things I HAD to have and never use

The look-at-me actress and her gay best friend who always sit next to me at every show

The Puerto Rican Day Parade is the one day I am not Puerto Rican

Candy CANES? Are you mocking me?

"PTSD is the new Chronic Fatigue Syndrome" and other absurd things my "friends" have said

"The cemetery is filled with indispensable people" and other horrible things my boss said

Jazz is a good metaphor for how my brain works, but I still hate jazz; "Just play the right note"

Aphasia and Agnosia

So, it turns out there is a name for that problem of when I say the wrong word for something. When I was still working, I used thingy all the time. Or I would say, you know what I mean. I got blank stares of my assistants, leading me to think that they were being deliberately obtuse to drive me out of my mind. Yeah, that's the natural conclusion to draw, NOT! Eventually they began to pretend to understand me since patronizing me was easier than insulting me by saying I was not making sense. Easier in the sense that they did not have to incur my wrath. As I began to realize I needed their help, and I was not in a frenzied emotional state of trying to do my job, I was able to respond when they used the phrase: I really don't understand what you are trying to say.

My impairment is pretty mild compared to some TBIs I know. I have an extensive vocabulary so I can substitute words to convey my message. It happens pretty fast. My neurologist gave me a spontaneous test during my last visit and I did not do so well. In the real world if I had to say the word "cuff," I point or say the end of your sleeve or the part around your wrist, but in his office under pressure, I just kept saying wrist. I know it's wrong but it just keeps popping up. Collar was lapel. Those things inside the collar (stays?), I said tie clip. I want to call him up and say, I know the names of those things now. I just couldn't think of them so fast. Can you give me that test again? I'm fine.

I listened to this Charlie Rose podcast about agnosia:

http://www.charlierose.com/view/interview/12099

Agnosia is another one of those missing stuff diagnoses. I seem to have form of facial agnosia. Everyone looks kind of familiar. I see faces and recognize people no problem but strangers also king of look like people I know. Faces are their own special category in the brain. Apparently, instead of distinguishing individual parts of the face that make a person unique, my mind is seeing faces more generally now. I take in what everyone's face has in common instead of what makes them look different. For some reason, everyone, at least all young women, look like my niece. It is remarkable how many times I say to my husband, Doesn't she look like Ruby?

I also have gaps in my peripheral vision. There is nothing wrong with my vision. My brain just does not receive that visual information.

At its worst, agnostics can look at familiar objects and not know what they are. During my angioma bleed, a slow oozing stroke, I experienced this. I remember glancing at my thumb resting on the side of the couch (of course, still attached to my hand and arm but I did not see that). I saw my thumb and I thought, "Weird, what is that thing?"

It is remarkable that a little (2.5 cm) benign tumor slowly leaking blood into the brain causes changes in perception. Even more remarkable is that the brain can get better.

Having a very brain-injured day

All I want to do is sew and that's all. When I try anything else, it doesn't go so well. I cried tonight because I could not imagine, could not conceive, could not foresee any possible next step to take.

I had the sensation I was watching myself from the outside. How does anyone even know if they are losing touch with reality?

This is a picture of my piece Why So Blue, Ava? I need to work on something pink for a change.

Cavernous Angioma Trifle

My daughter's Instagram:

My mom made a jello mold of her brain with a blackberry to represent her tumor. #darksenseofhumor

Too soon?

Never! I am one of those people who thinks there is no topic off limits when it comes to humor. Anything can be funny under the right circumstances. I tread lightly when it comes to delicate topics, at least I used to pre-injury. Or did I?

There were times before my surgery I offended people with my sarcasm. The horoscope book, Relationships, describes Libra I as having "a wry sense of humor and often a biting wit." Perhaps I use it as a rationalization, but the next sentence seems insightful. "Their humor is generally not intended to hurt, however, or even to make others laugh, but to make them think."

So, what do you think of my dessert contribution to Thanksgiving dinner? It expresses gratitude and though icky looking, was quite delicious.

Still mourning life before brain injury

Last night I dreamed that I was in my classroom trying to teach a math lesson. There was a mix of children and adults, but mostly adults. I had them standing in a circle to act out a problem. They were holding some big strands of string in a big tangled ring. I realized I was explaining the problem incorrectly and we really needed a Venn Diagram, so I started giving individual orders to people. I yelled and pointed at them, "You over! You under!" I couldn't remember anyone's name and I was going too fast. Of course, confusion built and the questions began. Me? What do you mean under? Under where?* Soon they were a tangled mess and I was yelling at everyone. WHY DON"T YOU LISTEN! WHAT PART OF OVER IS DIFFICULT FOR YOU! I even yelled for my assistant, asking why no one was helping me. Naturally, I got no help because no one had any idea what I was trying to do.

Eventually, I scrapped that part of the lesson. As I was wont to do in my days of teaching, I quickly conceived of an alternate approach to the problem.** I cut them out of the string, broke them into 4 groups and took out some giant chart paper. One group at a time, I explained the directions. When I got to the third group, I was lost. I forgot what I was doing, what I had told the first groups, and even how it was related to the problem. I told the class I needed a minute and I went to the bathroom and cried.

This scenario is not so different from some of my attempts to teach in the same way I did before my injury. I did not usually yell at my students.*** The dream did evoke the helplessness I felt in those last months. While I was crying in my dream, I told my daughter that when I wrote my play, this would be the opening scene. It would show my struggle as a teacher with a brain injury.

My play? Am I writing a play? A dream. It was just a dream.

I have decided to separate my tangential thoughts as foot notes.

*Ha! You said underwear. I love this joke!

 **When I was good at my job, this skill came in handy when some students understood one way and others needed a different approach. I was a nimble teacher, always thinking on my feet. I had an endless supply of ideas and metaphors that sprang to mind and I reached many different kinds of learners. I tried to teach "by the book" keeping lessons simple and straightforward. I would have given anything to be able to stick to a lesson plan where I stood in front of the class and lectured, sampled problems, answered questions, and then gave the same problems for homework. I just could not do it.

***With age and experience, I had grown very patient. I also maintained a steady practice of acquiring new skills outside the classroom, drawing, language, computers, sports. My philosophy being if I want to stay in touch with the process of learning, I had to be a learner.

Cerebellar cognitive affective syndrome and why planning is so hard for me

It was November 2010, before anyone was able to put a name to the problems I was having with my brain. After my surgery in April 2007, my main issues were building up the ability to walk for 5 minutes at a time, making sure I ate enough protein, and controlling my tears. I found myself weeping if more than one person visited at the same time or if anyone stayed more than a half hour. It was frustrating because I did not feel sad but I could not control it. That made it embarrassing too.

Once I built up my physical strength, I began to sense that something was wrong. Insistent that I had not received change from my purchase, I argued with storekeepers. When I found the receipt and small bills in my wallet, I was shocked. It felt like a magic trick had been played on me. It was like someone took a reel of film and cut out some cells and spliced the pieces back together. The events that took place from the time I paid until I demanded my change simply did not exist. Rewind. Nothing. Terrifying. 

Misunderstandings piled up. I probed, prodded, inquired, and searched for meaning in what I was being told. It felt innocuous enough. "I don't understand what you mean." Why were people getting angry with me? I was confused.

The most puzzling symptom emerged when I went back to work in September of 2007. Setting up my classroom for the start of the year had become a mindless task after 20 years of teaching. That first day in my classroom, I found myself opening and closing doors and drawers, locating lists and looking at them, moving piles of books from one part of the room to another, until after 6 hours, I realized I had accomplished nothing. Before my brain-injury, I considered efficiency to be one of my strengths. For every task I had a system and with each repetition, improvements were incorporated. It is hard now to articulate what it felt like to be frozen in my classroom completely aware of what I needed to do and yet somehow, inexplicably unable to initiate the steps necessary to begin the process. This was my introduction to the term “executive functions.”

The brain controls all our functions, voluntary and involuntary, physical and mental, sensory and motor, consciousness and sleep, emotion and affect, metabolism and regulation. It is easy to assign roles specific parts of the brain. This helps us understand why an injury to a certain part of the brain affects specific functions. Executive functions are complicated and require communication between many parts. This term was my initiation to the world of brain injury.

For three years I struggled to make sense of how my problems could be explained by the location of my injury. My neurosurgeon said there was no way I could be having those symptoms based on where the tumor had been and bled. He told me this three months post-surgery, six months post-surgery, a year post-surgery, and so on. My neurologists and neuro-psychologists confirmed a brain injury with their tests but could not explain the myriad of symptoms.

Then I met Dr. Jonathan Silver. He gave me an article by Dr. Jeremy Schmamann, Disorders of the Cerebellum: Ataxia, Dysmetria of Thought, and the Cerebellar Cognitive Affective Syndrome. A name for what is wrong with me was comforting. It was not all in my head. I mean, it is, but I didn’t make it up. There is even a Wikipedia page for CCAS now.

“It is characterized by disturbances of executive function, which includes deficient planning, set-shifting, abstract reasoning, working memory, and decreased verbal fluency.”

Imagine a beautiful angioma

I am in a weird place right now. I want to write to move ahead. I want to write to let go. I want to write to prevent myself from saying or doing anything I might regret.

My reaction time is fast. Whenever someone speaks to me, my brain prepares for an attack. Anger, fear, sadness, and rejection rise to the surface. The thoughts that fire rapidly across synapses are the articulation of these emotions. Having grown up in a house where words were sacred, I find it difficult to refute these irrational thoughts.

During the most recent presidential debate, I yelled at the television. NOOOOO! It was only 5 minutes into the program. My husband made me turn it off since it was too upsetting. I talked to my cognitive therapist about the event. I was angry at the moderator because she had promised to make sure the rules were followed and the questions were answered. She buckled so quickly and I was furious.

The election makes me worry about my future. I worry about money and health care and injustice and corruption and pharmaceutical companies and my daughter and clean water and the list goes on and on. My cognitive therapist asked me if I could trust that things would be okay, that the people would be smart enough to make the right decisions. No way, I replied. Trust is a big deal. History has shown me that I am the only reliable place to put any trust whatsoever. I guess it is one of those hot button words.

Imagine, on the other hand, I can do. I survived made it through my childhood by using fantasy to escape. As an adult, I worked hard to be grounded because I had more control. A job with insurance, a savings account, a mortgage, no credit card debt. These were all the ways I built a fortress of security so I would not be afraid. And now? With the future so bleak and my castle in ruins, I will retreat once again into the land of make believe. Can I imagine a serene and comfortable future? Yes, I can see it and that will have to do for now.

My Friend Rita's Poem

My Friend Rita's Poem:

Recovering from a Brain Injury

I am exhausted but...

I can not sleep

My thoughts are here but...

I can not think clearly

My words are many but...

I can not speak

I can not see what you see but...

I am not blind

I can hear everything but...

I have to cover my ears

I get hungry but...

nothing tastes the same

I can stand still but...

I can not stop my world from spinning

I feel so all alone but...

I am surrounded by LOVE

By my friend, Rita Chouinard, date of accident 4/3/11

Celebrate Good Times!

Saturday, September 29th was the one-year anniversary of the New York City Chapter of the Brain Injury Association of New York State. A large turnout made for a great party. It started with warm words, then delicious food, good friends, and a variety show. The work that made it such a successful event was apparent and yet, there were our chapter leaders hustling about cheerfully. Any doubts I had about having chapter leaders with brain injuries have been completely put to rest. I was majorly impressed.

I probably could have done more. I did recruit two friends, A.P.  and A.B., to join me in singing my parody song "because I gotta TBI." It was a big hit. There were a few actually talented singers like A.B. and P. who put their heart and soul into it. The stand-up comedian got a chilly reception when he heckled the brain-injured couple in the front of the room that talked during his set.

A month ago at our last chapter meeting, I sat next to A.B. Towards the end, I felt myself getting tired and overwhelmed. This is a sign that it is time to leave but I always think, "Oh, I'll be fine, this time." And then BIDDLE-DEE-OOP, I kick a stranger in the pharmacy line (true story). Anyway, as the meeting was wrapping up, A.B quietly hushed me and said I was such a bitch. I knew she was kidding but I still felt bad. I chalked it up to BI impulsivity and laughed, too. The difference was she said it a few times. It started to sting and it stuck in my thoughts.

At the party we all sat together to eat and chat. A.B. told my daughter that I was "something else" and recapped what happened at the chapter meeting. It was like I was hearing it for the first time. I had no memory of what preceded her calling me a bitch. A woman at the meeting kept interrupting with the same suggestion over and over again and was only appeased when her name was written down to help plan the Anniversary Party. As the meeting was ending, the same woman made a suggestion that there should be a party planning committee. Apparently, I said under my breath, for fuck's sake, you just volunteered for that.

I did not remember what had prompted A.B. to call me a bitch. I remembered being tired, irritated, snippy, but not exactly what I had said that was bitchy. I got it.

A second example of my dart-like tongue came up a few minutes later. R. sat down with us and I apologized to him for the third time. At a support group, A.B. was sharing about her engagement "bling" and how she couldn't get herself to take it off. Her brain injury was the result of a car accident. Waking from a six-week coma, she found that her husband of one year was killed when a truck jumped the barrier and hit them head on. Suggestions were offered, crosstalk ensued, someone brought up The Titanic and ring throwing and in that thread I mentioned my S.I. losing his wedding band while we were snorkeling. Unrealistically, I still look for it every time I am in Turks and Caicos.

Maybe, R. said, he threw it away on purpose. Zing. Fuck you, I said. He immediately said sorry and that he was just joking. I also said sorry because I knew that. After the meeting he apologized again, saying that sometimes things came out of his mouth before he could stop them. Duh, me too. Then I apologized again. So at the anniversary party I checked in with him and said sorry number 3. Later, our support group leader pulled me aside to make sure I was not upset with her. I couldn't imagine why she was asking. She said during the meeting while A.B. was sharing she tried to move things along and she thought I might have felt rushed and lashed out. No, I clarified, I was talking to R. I repeated the whole exchange. A.P. who was listening admitted that he, too, thought I was talking to him. The entire left side of the room probably thought my F.U. was aimed at them. What a mess.

My take-away from the party was a sense that I need to take responsibility for the distance I create between myself and others. In some ways, I am still that 18-year-old girl at college scowling in my giant men’s overcoat from the thrift store. Still my father's daughter, I would not  conform and smile, nor exchange fake pleasantries because society said I should. Alone, I carried my tray through the cafeteria looking at the groups of people talking and eating together, all the while wondering: Why doesn't anyone want to be friends with me?


It is not too late to change. I have good friends, new and old. At the anniversary party, many people bravely stood up to sing. One person spontaneously wrote a poem and shared. One man sang a medley of songs improvising as he went along.

Winter, spring, summer and fall

All you got to do is call

And I'll be there

Cause you've got a friend

If you fall

I’ll pick you up or

You can pick yourself up

Cause you’ve got a friend

I love that line and it really stuck with me. Falling is not an opportunity to test my friendships. I will pick myself up. So, there you have it.

Today I am fifty.

As the seconds tick by, I begin this post in a moment frozen in time. I have lived for one half of a century.

The event on Saturday was wonderful. Thanks to my friend who hosted it. Not only does she have an amazing apartment and a great eye for displaying art, she is kind, warm, and generous. We all held it together and it was a great success.

Seeing my work arranged that way was so fulfilling. It was kind of wacky though that the one piece so many people seemed to think was amazing was something I have shown them before. I did make a few changes to it before the show but still. When I first made it, I showed everyone. I thought it was so cool. Bleh. Nobody agreed. I kept it although I remember thinking about throwing it away once. It was the hubby who said not to throw it away. Then as I am getting ready for the show, he looks at it and asks me when did I make that. Umm. It was hanging on the wall in our bedroom for the last 4 years.

My daughter collected memories from people and put them in a scrap book. It is amazing. She cried as she gave it to me and I was so confused. I saw the pictures of myself and I realized I have no idea what was going on. She did so much work and only a few people contributed. I was so happy and relieved to see messages from people who were not able to be there. Nobody was avoiding me.

We requested no presents for the party. I really wanted people to come to the show with nothing in tow and open minds. I wanted them to take it all in. For me that was a celebration. I love making the stuff that I do. Sometimes, I feel so great about what I produce and other times, I feel foolish and want to burn it all. Having a show was a way to share me. This is who I am and this is what I am doing. I was glad that I got such positive responses. That was a great gift.

So, here it is my real birthday and I am wondering if anything is going to happen. Will my family get any presents for me? Last year, I was so sad. Not anymore! No way!

"I'm proud to say that I am 50 years old. I'm not one of them gals who's afraid to tell her real age. I'm 50! I like to kick! stretch! and kick! I'm 50! 50 years old!" I get to say it for a whole year, every day. And I will! People who matter, won't mind and people who mind, don't matter.

Regeneration: Art at 50

Today was best. I think everyone had fun. It was the perfect thing to do for my 50th birthday. I was surrounded by my most favorite people in the world. The few who weren't there sent wonderful greetings by way of a beautiful book my daughter put together for me.

A one-way street

This September is a big anniversary month for me. Tomorrow is my tenth wedding anniversary and in one week I turn 50. I was looking forward to this for awhile.  A couple years ago I imagined quite the celebration. In addition to being 5 years post-surgery, 2012 was the year I was to earn my master's degree.

I have been coming to terms with the fact that I did not begin my 24th year of teaching this fall, I do not have a master's degree, and that I will never teach again because I have a brain injury. I have actually been celebrating my small triumphs and feeling pretty good.

For my birthday, my dear friend L. offered to host an art exhibit in her home. I cannot tell you how moved I was by this gesture. I do not think I could have asked for a nicer gift. She has a large, gorgeous apartment in the West Village, filled with beautiful art, a full-length terrace, and tons of streaming light.
I have been excitedly gathering pieces of my art, finishing some projects, and inspired to make some new fantastic pieces.  Little by little I have schlepped stuff down to her home. Yesterday we bought some wine. It is so much more of an inconvenience for her than either of us previously envisioned. I hired people to help move her art and to help keep things neat during her party but, there is so much more to do. Her house is crowded with my pieces.

During the planning stages I knew I wanted a big party. I had a lot of friends at the school where I taught. Only a couple have kept in touch since I left. Would I invite some friends with whom I have not had contact? I received cautionary lectures from my daughter, my husband, and my cognitive therapist not to be devastated if they do not come. My TBI doctor asked me how I would feel if they said no. If it was going to upset me, maybe I should not invite them. I answered that in some ways it would be a relief. At least I would know for sure that they did not consider me friends anymore. The wondering and speculation bothered me more, I thought. It's not like I call them either.

In the end, I invited over 50 people. Saturday, we will have 22 guests. They are family, friends from the brain injury community, my daughter's friends, and a couple of pre-injury friends. In response to my "save the date" email, a few people I have not seen since I left school replied yes and said how excited they would be to see me. Gradually these turned up as no in the official RSVP to my friend's invitation. I got the final changed response today.

I am so lucky to have met friends through the Brain Injury Association of New York. I am also so lucky that my family and a couple friends stuck with me. It took a lot of work on their part to understand brain injury. Ten years ago, over 150 people came to our wedding. So many teachers and parents. In the next five years I made more friends at school. Then in 2007, blood seeped into my brain and gradually friends slipped away. "Like trying to hold water. Trying to hold sand," Bill Morrissey sang in These Cold Fingers.

The bottom line is I do not have to wonder anymore. I cannot blame myself for the loss of these friendships. The two-way street was approached and met with a DO NOT ENTER sign.

When I left that school my former assistant's parting words to me, following a tirade of my many offenses, were that my husband should be worshipped as a saint. The implication being... I think you can fill in the rest. Nasty words. I do worship my husband but it is terrifying to constantly feel like it is a great sacrifice for him to be with me. Last week I teased with my husband about his marrying an older woman and all the drawbacks. I jokingly asked why didn't you pick a younger bride. He answered seriously, "Because I love you." For all my doubts, these words woke  in me a realization.  I shared the story with my TBI doctor yesterday. I realized that I am not unlovable but in the last few years I have made it very difficult for him to love me. Dr. Silver said, "And it is not your fault."

I am going to be okay. No, I am going to be more than okay. I used to be quite popular but it came so easy that I hardly cared. Now, the people in my life are treasures. Popularity is like a soap bubble so shiny and appealing but gone, pop, just like that. My husband, my daughter, my mom, sister, brother, and my true friends are diamonds. Thank you so much for sticking with me. I love you and look forward to being with you on Saturday.

Getting better?

On August 20th I went to see my doctor. He is one of the leading brain injury physicians in the U.S. We had a great session. I told him about my vacation experience and how confident I have been feeling. We talked about how much I have been learning from my new cognitive therapist. The doc pointed out that while I was seeing my previous cognitive therapist, I was still working. He pointed out that if getting through the airport was so difficult, there was no way I was going to get better while I was working.

It left me thinking about the phrase "get better." I am getting better. I have more self-control during non-stressful situations. My coping strategies have improved. Acceptance of my leaky brain is improving my relationships due to increased trust and fewer arguments. As I floated down the street, I allowed myself a little fantasy. What if I get so much better that I can teach again? It's true that I donated all of my math and gifted education books to a good cause. No matter because I would be walking into a new situation where I would need to be told what to teach. It's also true that I dropped out of my master's program. Also, not a problem since I could use the credits towards certification in New York.

cloudy vision

Then I imagined getting through one single 45 minute class and I my stomach cramped up. Some aspects of my brain injury are pervasive. I'm not fatalistic but I need to take it slowly. I did walk around in the lovely cloud of denial for awhile.

Case in point:

1. In the last ten days I have lost:
1. my favorite new hat
2. the keys to my storage room
3. a check
4. my mini voice recorder
5. my iPod touch
6. a prescription I was supposed to get filled 
2. In the last ten days I forgot:
1. to bring checks to my doctor's appointments
2. to pick up laundry from the basement
3. to put milk back into the refrigerator
4. to mail a letter and ended up carrying it around for days
5. to take the remnants of a sandwich from my purse
6. the point of this blog entry
7. to eat lunch twice, leaving me cranky and confused until dinner
8. to feed my dogs one day
3. In the last ten days I found:
1. a gift certificate that I keep misplacing
2. two checks that I never deposited, one 18-months old and the other 3-years old
3. three prescriptions from 2010
4. four doctor's bills from 2 years ago that I never submitted for insurance
5. and no golden rings - "Engagement ring, I miss you so much!" 
4. In the last ten days just out of anxiety I bought:
1. knitting needles that I do not need
2. 3 new bags that I do not need
3. pounds of candy that I should not be eating
4. four poly-cotton t-shirts online for Brian, absolutely certain they were 100% cotton
5. articles of clothing that do not fit from the thrift store to alter
6. a cheese quesadilla 

I also double booked appointments twice causing last minute scrambling. I have not made two important phone calls I was supposed to make. I spent a whole day trying to mail one reimbursement form. I went back home several times because I forgot something I needed. This caused me to be late or unable to complete tasks. I yelled at a sales person. I tripped and fell down in the subway. I screamed when someone walked too close to me. I called my pharmacist stupid because he didn't fill one of my prescriptions. I interrupted every single person who tried to talk to me. I misunderstood at least a quarter of what was said to me. I argued with my neurologist about how to read my MRI. WTF!

All of this is not so unusual for a ten day period. In general I note my limitations and keep working. I guess it just hurts now because I kind of thought I was "getting better." 

Traveling with a brain injury

or any sort of invisible disability can be a nightmare.

For me, the problem begins with packing. This was one of the first signs that there was something wrong with my brain and one of the most difficult problems to explain. It has something to do with prospective memory, remembering to remember. Planning is one of those "executive functions." You have to remember what is needed for a trip and then follow through with gathering the correct items and then make sure all of those items (and not a bunch of others) make it into the bag. 

I just got back from a week long trip to my beautiful and most favorite place in the world. It left me feeling that I was capable of change. I actually packed the night before. I gave myself permission not to bring any crafts or my laptop. For entertainment, I brought only a book of Sudoku on my carry-on. It was liberating. Although it was scary by limiting myself to the essentials, I eliminated a lot of the cognitive energy it takes to keep coming up with alternatives. 

I prepared for this trip for weeks with my cognitive therapist. We reviewed all of my packing strategies, role-played going through the airport security, and developed a list of phrases I could use to reassure myself under worst-case scenarios. I made a short list of helpful suggestions to share with my sister. I know how much she loves me, but sharing a room with me for a week even before my brain injury was difficult. My tendency to perseverate, fixate, get stuck, or over-react put a strain on all of my relationships. As an exit strategy or to put an emergency brake on any potentially explosive conversations, I shared the phrase my husband and I use: Enough said! Although she modified it slightly, tempering it with I think that is... I still heard "enough said" and responded like a Pavlovian dog. I am so grateful that she is open and understanding. 

All of this was great and made the whole vacation experience much more relaxing. The number one and most helpful part of airport travel was the use of a wheel chair. I broke a bone in my foot in June and was still in a cast for this trip. I rested with my foot compressed, elevated, and iced for the whole month of July. What little walking I did required a cane and a slow and steady gait. When I found out that I would still be in a cast for my trip, I called the airline and asked for a wheel chair. They never asked me what was wrong. They just picked me up and whisked me through the whole confusing, overwhelming experience that is post 9/11 international travel. 

For a person with a brain injury, at least this person, getting on an airplane is like navigating an obstacle course. The fluorescent lights and abundance of signs, the crowds of people and bags, the number of personal, important items to juggle, and the gigantic new place to navigate without a map or help are all part of a giant recipe for brain freeze or, more likely, a catastrophic reaction. Besides all the external obstacles, my brain injury gave me a new bunch of hurdles I need to tackle cognitively. I have to keep telling myself that my perception of the world may be distorted. I have to use my training and hope that my reframe is correct and that I will respond appropriately. If this system breaks down, I start crying. I can be completely aware that this is not an appropriate reaction and still unable to control it. The more embarrassed I become, the harder it is to control.

The wheel chair transformed my experience. Everyone was immediately helpful. Nobody expected me to do anything and even stopped me if I tried. A guide provided by the airline whisked me past all the lines and navigated all checkpoints fielding and repeating questions for me. At every step there was someone to tell me exactly what to do. I was constantly reassured and given frequent information about what to expect next. The guide waited to make sure I put the appropriate documents where they belong. I cannot tell you the number of times I have lost my wallet or all my money during situations where my attention is divided. I wasn’t great pre-injury but after forget it. I stopped being surprised. The wheel chair service was like a magic carpet ride. Nothing could go wrong. Nobody minded if I was slow or confused. I was met with patience and respect at every turn.

Now you may be thinking, wow, everyone should get that. The difference is that my injury can render travel impossible. Brain injury is far more crippling than the broken bone in my foot. The problem is that it does not show. There is no giant bandage around my head to remind everyone that I have a problem.

I strongly advocate that everyone with a disability that affects their ability to travel to request a wheel chair. I think I will be doing it as long as I am still having trouble. It is truly an accommodation that makes airplane travel accessible to me. I would never take a wheel chair spot in a parking lot. Someone else needs it more than I do. The wheelchair service at the airport is not the same. There is no limit on the number of people allowed to use them. (Not that I know of anyway.) There is no equivalent for folks with an invisible disability. 

I googled “TBI and travel” and there is a dearth of information on the Internet. I got to the gate all by myself. It was the first time traveling since my injury that I arrived at my destination feeling as capable as when I walked out my door. So, there it is.

Look at me in my favorite place in the world!

A great message for the ones who stuck around:

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Photos from The Messenger Gazette in New Jersey

The Creativity Expo 2012 got some excellent press. The main article is about an amazing teenager Amara Riccio. I met her at the opening reception. She danced, and read poetry, and exhibited artwork. Her youthful energy and positive spirit reminded me to be grateful for what I have. At least for today, I will not write about grumpy stuff.

Here are two photos from the article:

Mixed media by Alyson Vega

Fiber Art by Alyson Vega

This is a link to the article about Amara:
Creativity Expo 2012

Nothing would make me happier than for someone to love one of my pieces so much that they want to own it. So far, no one has bought any of my art, but I think the prices were probably too high. However, inspired by the positive feedback I got, I will be listing most of the pieces for sale in my Etsy shop soon. I will keep you posted.

Creativity Expo 2012

I am an artist.

What hurdles must one overcome, what qualifications must one have, what level of training or number of pieces or items sold or percentage of time spent grants someone the title of ARTIST?

I have no idea. This is just a blog, not a soap box. I go back to one of my all time favorite movies, The Matrix, as a source for my metaphors. Neo asks the Oracle how he will know if he is the one. She tells him that you just know it. The Oracle points to the sign TEMET NOSCE and says, "It means know thy self. I wanna tell you a little secret, being the one is just like being in love. No one needs to tell you you are in love, you just know it, through and through."

So, now I present some ponderings on the topic. I remember early on after my surgery when I began to realize my brain had been altered, I was not sure how to communicate this. It seemed important that I get an official diagnosis. I read about malingering and hypochondria. How would I ever be certain that these words did not describe me? When the part of you that describes symptoms is the same part of you that is suddenly processing information incorrectly, how can you be sure if anyone understands you? You can't.

I wanted someone to explain what was wrong with me. I wanted a diagnosis. I wanted an indisputable argument to present in my own defense when I was misunderstood or berated for inappropriate behavior. I still haven't found what I'm looking for. I stand teetering on the precipice of self-knowledge. I do not need an endorsement from the outside world. I know. I have a brain injury.

In some ways it is like any number of life experiences or elements of ourselves that set us apart from others, we take comfort in being with people have that in common. A friend told me that after she was diagnosed with breast cancer, she could only stand to be around other survivors because no one else understood.

Using words to describe yourself to someone else is only useful when you have a shared understanding of those words.

But, I digress. What's new? Enough about me, what do you think of me? That is not a real question. I do not want to care what other people think of me anymore. The hardest part of leaving my job as a teacher was losing the sense of self-worth it gave me. I loved being loved by so many students and by so many parents. I loved that they loved me because I took the time to get to know each student. I was really good at it, but even better, they told me so. 

So am I an artist? Yes. There may not be any outside validation and there may be countless opinions, both for and against such a statement. I'm okay with that.

I am going to share some photos of my art. (Yes, there is still the part of me that is a vain and gluttonous whore seeking praise and approval. Why else would I blog at all?) 

If you are in New Jersey, near Raritan Valley Community College, stop by and check out work created by people with Traumatic and Acquired Brain Injury, including these pieces by artist Alyson Vega, now through July 22, 2012.

Cognitive Decay

Flow

Salvaged Dendrite

Negative Space

Sheared Quilt

Thank heavens for little girls...

My little girl is absolutely, hands-down, without a doubt, no questions asked, don't even go there, cuz I'm not trying to hear that, the best thing that has happened to me! She is my single greatest achievement! She is my best friend, my pride and joy, my raison d´etre, and my baby.

Looking Back!

She has probably forgotten, but when she was in high school, she used to always tell me she wished did not have to become a grown-up. She wanted to stay my little girl so I could take care of her. I never told her that there was nothing I would have loved more. There were two reasons I kept this to myself. One was that I did not want to hold her back from being strong and independent and able to take care of herself. The second was (and this was pretty selfish of me) that she had already become a teenager so there was no turning back. Anywhere between 15 months to 12 years old would have been cool. After that it was kind of like living with my wonderful mature and responsible adolescent daughter who occasionally, and with no warning, became possessed by a stranger.

Don't get me wrong. Most of the time she was awesome. We shared great conversation, jokes, walks, TV shows, vacations, clothes, and everything. We could practically read each others' minds. We kicked ass as a team in Outburst or the celebrity game because we had so many inside jokes. She did my make-up for me. She baked yummy surprises for me. She worked hard in school without being nagged and put up with my competitive need to prove she was the smartest person at her school. (I mean seriously when you are that close to a perfect score on the SAT, why didn't she let me spend $1000 bucks for a tutor? C'mon, bragging rights.)

The hard parts were when she got angry or upset or cried for reasons I could not understand. It was like the first part of her life. Infants do not have any way to let you know what is bothering them. Crying covers everything. (Seriously, though this has always kind of described Sachi.) But, how was I supposed to know what was going on when her fingers were pounding on the keyboard with ferocity in response to what one of her friend's "said" in an instant message. Why was she so upset when someone erased her high score on Mine Sweeper? Or, when someone else stole her idea of wearing a tiara to school? Or, when she was getting ready to go on a "real date" with her boyfriend? Or, when a homeless lady pushed her? Okay, well that one I kind of understand.

What's so funny? Hatachi!

On Monday, she will turn 26. I cried on my 26th birthday because I thought I was supposed to know who I was by then, I mean, besides being a mom. Ha! The joke is I still don't know who I am, except for the mom part. And, it turns out that, for me, that is the best part!

Fundraiser for the BIANYC

Tomorrow our chapter is having a benefit. Every dollar of the admission will go directly to our chapter. There are a bunch of professional musicians and comedians. And then there are a couple of brave amateurs, including yours truly. I am going to perform a stand-up routine. I originally did it when I was in the grad school program variety show. It was mostly about being a teacher so I adapted it to reflect the recent changes in my life. Wish me luck!

In other news, I applied for SSDI and was approved in like 3 weeks. It is a relief but also depressing. It is much like going through menopause (sorry to my squeamish readers) in that with acceptance comes resignation. There is the gift of no more visits from my monthly friend wreaking havoc on my mood. The flip side is a confirmation that my body can no longer conceive a child. It is like the official stamp saying YOU ARE OLD!

Back to the fundraiser.

If you happen to be in the New York City area, please come and join us. I should be on some time between 2 and 3. Sachi will perform too. Here are the deets:

BENEFIT CONCERT 

MUSIC! POETRY! STAND‐UP COMEDY!  

featuring  

King DaviD  Kid Dizzy 

SIMONE ELLOVE KING  NEGROS AMERICANOS 

Yippie Museum Café 

9 Bleecker Street 

Saturday, June 16th 

 NOON to 5:30 

$10 donation at the door 

Drop in anytime, stay as long as you like 

All proceeds benefit the 

New York City Chapter of the 

Brain Injury Association of New York State 

Did you ever feel something...

so strong, you became overwhelmed by just being alive? It happens to me sometimes. I will look into Lily's round black eyes, or catch the smell of the sidewalk after rain, or taste a chocolate so sublime, that I think, I am alive. A tingly synaptic connection is made before the verbal part of my brain can register or articulate the experience.

Those moments when there is nothing but a wave of sensation and a hint of mortality, I know I am small and temporary. I am okay with that.

More interpretations of what is inspirational

As I ponder this subject, my ideas begin to crystallize. Picture rock candy forming on a string as the water evaporates. Maybe not.

Maybe it is more like my ideas are becoming purified like water through a Brita filter.

What is it called when something goes from opaque to translucent to transparent? I think that is the process I mean. My concept of inspiration is becoming clearer or at least easier to articulate.

April 26th, 2002 my brother Tim died. This is an excerpt from my words at his memorial:

            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. It would be soft and fluffy when we landed. 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. (Yikes, another blow to the head.) 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. Tim's tears froze on his face and 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 think that is why I do not find inspiration in portraits of smiling brain-injured people. It is not because I do not think they should be smiling. It is because for the most part, the ones who are smiling were smiling even before the injury. 

Far more inspirational is the person who never really smiled, even when she had plenty to smile about and now with a brain-injury must fight so hard to smile. 

The face I see has an expression of determination not resignation, dried tear stains, and a smile revealing a glint of arch humor. It is a face that is mourning the loss of the old self while embracing rebirth. Not unlike a baby, entering the world and leaving the safety of the womb, crying at the outrage. Those cries, gasps, screams reveal the struggle but also serve the purpose of allowing oxygen to enter the blood stream. 

I shake my fist at the reality while I struggle for air. The face of brain injury that inspires me is the one that reflects survival. I do not need a face that says: I am happy even with a brain injury. I want a face that says: 

I AM even with a brain injury.

(Maybe, I do kind of want to be an inspiration, just the way I am.)

Happy Mother's Day

Last weekend my daughter remarked, "I sound just like you when I say that." Whatever it was she said I am grateful that I do not recall for it is never a flattering comparison that accompanies those words. I, too, have had that feeling. I cringe as words that sounded inane, laden with hyperbole, and spoken with that tone, have crossed the time/space barrier from my mother's mouth to mine. Why do I fear that I have become my mother? Why does anyone?

Today is a good day to remind myself that for every annoying habit or distasteful trait I inherited from my mother, there are dozens of positive qualities that she passed on to me that make who I am today.

For one thing, no matter how horrible things were, birthdays were celebrated with aplomb. I am generous because of my mother who every year bought us many presents, even when there was little money. She let us pick what the whole family would eat for dinner. She made a special cake. Thanks to my mom, I still think it is weird when people claim to have made something themselves when it came from a mix. Yeah, that's right! I made it from scratch! Hollah to my moms. She bought our favorite ice cream, even if it was butter pecan and nobody else liked nuts.

I am also thoughtful because of my mother. Yes, at times, I have wondered why she clipped and mailed articles about rowing crew to me for ten years after I was a coxswain for a year in college. I know, now, that she was thinking about me and she wanted me to know it.

These days, it is fluffy sheep and Sudoku puzzles and I love them both. Because of my mother, my sister also has this awesome quality. She is delighted when she finds a Custo Barcelona bag for me or anything with skulls on it. "I saw this and I had to get it for you!" Those are loving and sweet words and I get a warm fuzzy feeling when I say them. I need to remember that I sound just like my mother then, too.

I have friends again!

I have been doing pretty well, making many new friends through the Brain Injury Association. 

Two weeks ago, I went to the Sprout Film Festival with my first new friend. She is so smart and so strong and like me, was totally clueless about how bad things had gotten at her job before she left. 

The first time I met her, I tried to explain that I used to be smart. 

She said, I know, me too. 

I said, "No, I mean really smart. I went to Harvard." 

"I went to Yale," was her reply and with that we bonded. 

I wonder if we could start an Ivy League brain injury group? 

Last Saturday, I had so much fun with another one of my new friends. She is a super talented artist with a wicked sense of humor. She so cracks me up. We are the same age and she also grew up up in the city. We have a lot more in common but it's not worth delving into here. Anyway, we went to a rummage sale and found treasures. She kept singing, "We don't need no _____" to the tune of Pink Floyd's The Wall, as it got later in the day and I was pondering the purchase yet another unnecessary acquisition. 

"We don't need no Ikea curtains." "We don't need no vintage microscope."

Then out of the blue, she turns to me and says, "So, I guess you sister is in a lot of trouble." 

I said I had no idea what she was talking about.

"Her husband is a lawyer, right?" 

Yes. 

"Well, I heard on the radio this morning that he is her lawyer, that she was involved in some kind of protest, and that she got in a lot of trouble. He's going to be defending her. Her husband."

I started to freak out because we joke all the time so I had to make sure she wasn't kidding. I told her she was scaring me and that I hadn't heard anything. 

"Was she arrested?" I asked. 

"I think so, maybe, I might have heard it wrong, though..."

At this point I called my hubby and asked him to Google it. He called me back and explained the whole story. Apparently, my brother-in-law was defending some protestors opposing a new stop and search thing. (I think.) The judge found out who my sister is and wanted to her. Apparently, it made big news that my sister gave him a piece of her mind, telling him she disagreed with his ruling against the protestors. 

My friend felt bad, I think, and said she only mentioned it because she thought I would have already known what happened. I've been there. I totally understand and it didn't bother me. I am okay because I see a part of me.

Last night, another new friend took me to see a play. I guess I would be raving about how great it was if I had not fallen asleep in the middle. It was good though. It was about head injury in the N.F.L. and what they are starting to learn. On the way there, I was telling her about a misunderstanding I had recently with a family member. My sweet, thoughtful, ever positive friend exclaimed as I finished the story, "What a fucking bitch!" Immediately, she back-peddled a bit, recognizing that her reaction was slightly over the top. Well, those of you who know me understand why I relate to that. It only endears her to me more.

It is really a blessing to be friends with these ladies who are smart and funny and kind and creative but who also have a brain injury. We get each other and laugh about it. I still say I'm sorry a lot. But with them, they know I mean it. I love you guys!

PUT DOWN YOUR RULER

Yesterday, I officially withdrew from my Masters degree program. It makes me so sad to say that. Sad is an understatement.

Although the only action I needed to take was to write a short letter to the director of the program, my instincts to preserve my sense of self rendered me paralyzed, unable to execute this task for months.

I taught for 22 years. Prior to my surgery, I had spent the previous 12 years as THE sixth grade math teacher. When I started teaching just math, there was an honors section and three regular classes. Although it was not called "honors" and followed the same curriculum as the other sections, everyone knew it was the "top" group. It was a lot of fun teaching that section. It was not easy like many teachers thought. It was challenging and exciting and it was where I found my real strength as a teacher. When they did away with the advanced section, it became my personal mission to find a way to teach the gifted math student in a regular math class. A successful system would be one that benefited all of the students.

After my surgery, my return to work was a spectacular disaster. In previous years, Labor Day weekend meant the return to school to dust off materials, make a few copies, and label all the student supplies. In 2007, I returned to my classroom in August to prepare for a new year as I had always done. That first day back, I found myself sitting on the floor crying. I had been there for 5 hours and had accomplished nothing. It was the teacher who had subbed for me during my absence who consoled me, encouraging me to be patient with myself. For a fleeting moment, I felt like everything would be okay.

Month after month, things got worse and worse. I could not learn my students' names. I had never used lesson plans before. I had never needed them but suddenly, I was writing things on the board that made no sense. I could not talk and write at the same time. I could no longer do anything that required thought if there was any noise at all. Good luck trying to silence a group of sixth graders so you can string together an intelligible sentence. On the rare occasion I was able to get everyone to completely freeze and not utter a sound, my method for reaching that state was so alarming that my students were too terrified to process whatever it was I had wanted to say.

The advice I got was the same from everyone. Stop trying so hard. You don't have to be the perfect teacher. Just go in and stick to the plan. That is good enough. Even if I could have done that, it would have been so out of character for me. I had been a great teacher because I loved doing it. I loved the students. I loved the material. I loved a challenge and I was creative in my strategies for problem solving. I could get the classes' attention by whispering, by speaking another language, by singing my lesson, by doing a silly dance, or even by whipping out a puppet to take over the lesson. My favorite was my king puppet.

I got King Puppet at the Bank Street Book Store. I was drawn to him because his beard was so soft and furry. I used to love to bring him out at the start of our measurement unit, exclaiming simultaneously, "Take out your RULERS!"

After the first year back, my class load was cut in half. The next year, all of my classes were taken away and I was asked to work with just a few students who were gifted in math. Although, I was beginning to get a picture of the damage my brain injury did to my abilities as a teacher, I was, for the most part, in denial. It felt like a nightmare, being stripped of my responsibilities, my title as chair of the math department, my esteem in the community. However at the end of that third year, I thought I had found my new post-injury place. Although I could not plan a lesson or teach a whole group, I could work with one or two precocious kids whose needs I could assess on the spot. My long-term memory for math was intact so with help I was able to retrieve materials and introduce a new enriching and stimulating topic to a kid who was bored out of his mind in his regular class. That spring I applied to and was accepted into the Three Summers Masters Program in Gifted Education at the University of Connecticut. I think I remember blogging about being like the scarecrow in the Wizard of Oz. If I couldn't have a brain at least I would have a degree.

Fast forward to today. I stopped teaching last year and day after day, week after week, month after month, I have begun to accept that I cannot teach anymore. I wanted to hold onto a tiny bit of possibility. I thought I wanted to pursue the degree so at least I could write about the subject. If I had lost my reputation as an expert in my field, those letters after my name might be an acceptable substitute. Although some of the schoolwork was manageable, most of it required skills I lost like planning. Officially dropping out of the program was like admitting defeat, letting go of the last lingering hope that I might some day wake up from this nightmare and be my old self again.

My cognitive therapist helped me write the letter during a session. It took me 2 weeks to type it up and then I finally printed it and popped it in the mail. When I was shutting down the computer, I realized I had not dated the letter. Oops. Nothing I can do now.

Later in the afternoon, I was cleaning up and this sight caught my eye. I am not sure how or when he got there. Framed in the glow of the sun through the window was King Puppet laying face down on a stool. How perfect! How beautiful! How symbolic! The King Must Die! It took awhile but I was finally able to let myself put down my ruler.