Debugger

Debugger:

 

It is when what I rely on to understand how things work isn't working reliably.

It was worse than I thought.

Follow up to my inappropriate Xmas party behavior

I am not laughing anymore. Now, I feel terrible. Previously I wrote:

At my friends Christmas party this year, I was standing at the buffet table. Right nearby three men were chatting when a preadolescent boy tried to dash by. One man stopped and remarked at how tall he had grown. What are you, five three, he asked. The boy nodded and I was struck with disbelief. This kid was clearly at least 4 inches shorter than I am so pointing my finger I interject, exclaiming loudly, "ABSOLUTELY NOT! These is no way he is five three. I am five three so he can't be that tall." Instantly I caught my faux pas as the men quickly averted their eyes. "Sorry. That was inappropriate," I say as I excuse myself retreating to another part of the room.

When I relayed this story to my friend, the hostess of the party, her face sank a little. At the time, just minutes after the event, I thought her expression might have been a sign of empathy for ME. Like she was thinking, "Oh poor Aly and her social mishaps..." Another possibility I considered was that she was experiencing concern that I was too loud and disturbing the other guests. The truth is I had no idea the madnitude* of my social gaff.

It turns out that the subject of my story is not a preadolescent boy. He is 14! In addition, his parents have been struggling to figure out why he is not growing. There is no way I could have known this but it makes the faux pas so much worse. It's not so funny anymore.

How can anyone separate my behavior from me? My words sound cruel so doesn't that make me a cruel person?

For now I think I will stay home and not inflict myself on the world.

*Madnitude was a typo that I decided to leave uncorrected because the feeling that my mistakes are compounding, intensifying in frequency and severity may eventually lead to complete madeness.

Nightmares: I can't tell what is real anymore.

I talk in my sleep now. I scream, I kick, I cry. When I wake up, I cannot shake the feelings I had in the dream. I used to be able to reassure myself, even in the middle of the dream, that it was only a dream, that I didn't need to be afraid or angry. The dream might even change after that. Now, I wake up certain  that my dream feelings reflect reality.

It is 4 AM and I just woke up crying because I was dreaming that my sister and I were fighting, physically like we did as kids. She had me pinned down and was about to do something awful and then she let me go. As my nightmare continued, she walked off like nothing had happened and I demanded to know how she could be so horrible to me, why she didn't love me anymore. The reason, she responded, with finality, was some story about me that our mother had conveyed. It was the disbelief that my sister now longer loved me because of some second-hand information was what led to my tears.

Even as a kid, i had long vivid dreams and could recall the details and the narrative the next day. What a weird dream dream, I would think. Now, even though I wake knowing that the content of the dream is not reality, I feel certain that the underlying feelings are. It is hard to separate "I" from my brain.

Now, as I write this and gradually feel more wakeful, the feelings fade. My husband has been waking me during my nightmares, no doubt in response to being woken, telling me that I am dreaming. He says, wake up and stop having that dream. Easier said than done. It is not really fair to him to have to try and sleep through my tirades, but I am more likely going to stop having the dream if I stay asleep. Dreams pass as we drift passed REM sleep into a deeper more restful state.

What is so upsetting to me is not the dreams but that having a brain injury is so much like that feeling that my perspective seems so real and can be trusted. I was pretty socially savvy before this happened. I made friends easily, was well-liked, but most importantly could breeze through casual social interactions. Put me at a cocktail party and I was perfectly comfortable, engaging with everyone and working the crowd. Now, I am leery and anxious, mostly because I have learned that I might say or do something socially inappropriate. Despite being armed with that knowledge, I am powerless and unaware when it happens. If I am with my daughter, she gently points out that I am arguing with whatever anyone says. My husband scolds me for being childish or inappropriate taking too many desserts or playing with the decor. I recognize when I see the strange blanks stares or when people quickly turn away from me that I must have done something strange.

At my friends Christmas party this year, I was standing at the buffet table. Right nearby three men were chatting when a preadolescent boy tried to dash by. One man stopped and remarked at how tall he had grown. What are you, five three, he asked. The boy nodded and I was struck with disbelief. This kid was clearly at least 4 inches shorter than I am so pointing my finger I interject, exclaiming loudly, "ABSOLUTELY NOT! These is no way he is five three. I am five three so he can't be that tall." Instantly I caught my faux pas as the men quickly averted their eyes. "Sorry. That was inappropriate," I say as I excuse myself retreating to another part of the room.

I laugh when I retell that story because no harm was done and it happens too often for me to be surprised anymore. What preceded my bold statement was the certainty that the men would be grateful for receiving the correct information. Oh, thank you, we needed a benchmark in the form of a five foot three middle-aged woman so we could accurately gauge the boy's recent growth spurt. It is a split second thought process based misreading a social cue that leads to impulsive interactions. The messages that my brain sends me are not to be trusted. My appraisal of the situation and subsequent judgment is incorrect. I know that intellectually but adjusting to not believing my summary of social situations when I used to be so savvy is difficult.

The impulsiveness, the minor arguments, and the slight awkwardness are all tolerable. What leaves me feeling full of despair, hopeless for the future, is my overall assessments of my relationships with the people closest to me. I can be suspicious and paranoid about my family's intentions. I am often certain that my closest friends hate me. When I take the time to spell out, to my cognitive therapist, my husband, or my daughter, each of the clues and messages that led to my assessment, they help me adjust my thinking. I can see how my brain tricked me into reading information incorrectly. I adjust my thinking and feel comfortable again. What is scary is that sometimes I forget that I had that realization. The next day I am mistrustful again. Who will be there to remind me, hey Aly, you figured out that you were reading that wrong and you are cool with it now? If the answer is just me, I am in trouble because my brain is a big fat liar now.

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.