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?

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.

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!

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.

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

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

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!

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.