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