I lost my hat today.

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

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!

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?

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

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

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

I am grateful today.

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

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...

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

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

This combination of mood and personality changes with the cognitive impairments that could be demonstrated on neuropsychological testing were the first indicators of the persistent pattern of executive, visual spatial, linguistic, and affective impairments in the remaining 19 patients that we studied 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

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

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?