Posts deleted in 2010 Post #1

Was hoping I could go back to work Thursday but doc said "No, no, no."

from T.B.I. To Be Invisible by Aly V

OR: Why do we feel better, when something has a name?  

Therefore, it turns out there is a big difference between a TBI and an ABI and I have an ABI. That cavernoma, cavernous angioma, cavernous hemangioma or whatever you want to call it was in my right peduncular cerebellum. It bled and swelled into my left pons and left peduncular cerebellum. It swelled and extended significantly into my brain stem and was pressing on my left fourth ventricle. I do not even know where those places are or what they look like. 

Still no idea of where this is in the brain, its size, or color. I just added those colors because they look good together.

The MRI showed previous bleeding. Because of the cavernous angioma's location further bleeds, which were almost certain to occur, could be fatal. I knew brain stem was a risky place for surgery but I weighed the choices: death or paralysis, death or loss of sight, death or deafness. I chose the surgery. 

By the time I had the craniotomy four weeks later, I was no longer afraid of death. Do you know the feeling of surgical anesthesia? In one second, you are gone and then you wake as if no time has passed. Even though hours could pass, you have absolutely no consciousness. You do not feel the passage of time or anything. So I realized if I died I would be spared the knowledge of that outcome. I knew if I woke up, then there was only one logical conclusion I could make. I had survived the surgery.

Before the operation, Dr. S introduced me to an anesthesiologist resident who was to give me a mild sedative after which I would be introduced to the surgical team. The next thing I remember was Dr. S trying to wake me. I asked if I was supposed to count backwards and he told me it was over. "I guess I am not dead then," were my next words. The good doctor reported to my family that I was awake and already making jokes. No, my friends, that is called logic. It was not a joke. 

Recovery was supposed to be easy but as you may have noticed from my ranting and raving for the last three years it has not been easy. I have had to advocate for myself with my reduced interpersonal skills and general distaste for asking anyone for anything. 

On Thursday, I saw a new doctor and he took the time to ask me questions and to read my medical records. He recognized my tangents, perseveration, and over-thinking and he brought me back to the point gracefully leaving my dignity intact. He asked me if I had ever heard of:

Cerebellar Cognitive Affective Syndrome

No, I had not so he printed out some information for me. Considering the location of the surgery, it makes so much sense. The symptoms are pretty dead on.

Disturbances in executive functioning which include:

Deficiencies in the areas of:

• planning
• set-shifting
• abstract reasoning
• working memory
• decreased verbal fluency

Impaired spatial cognition:

• visual-spatial disorganization
• impaired visual spatial memory

Personality changes:

• disinhibited behavior
• inappropriate behavior

Linguistic difficulties:

• agrammatism
• mild anomia
• aprosodia

These are the words I had to look up because I had never heard of them before.

agrammatism

–noun

The inability to form sentences by virtue of a brain disorder.

aprosodia

–noun

a neurological condition characterized by the inability of a person to properly convey or interpret emotional prosody, referring to the ranges in rhythm, pitch, stress, intonation, etc. in language.

anomia

–noun

(neurology) The inability to remember names.

(neurology) The difficulty in finding the right word

The problem with dysmentria of thought or cognitive dysmentria as opposed to that of dysmentria of movement is that people cannot see it from the outside. I am and have always been a bit clumsy, more so since the surgery, especially with dropping things, falling when I make turns, misjudging how close I am to stuff therefore bumping into them.

Therefore, it is still an invisible disability that manifests as personality defects. I have no idea what anyone thinks of me anymore. While I was in the hospital the last two weeks, I felt sick of being sick. Sick of being different. Sick of being misunderstood. I do not even know who I am anymore. I asked that no one from work visit me and I was grateful that they respected my privacy. 

Sometimes, I feel like I am already dead. The person I was is gone and I am now invisible. I can stand in front of people and they do not see me. My greetings are met with silence. I feel like a ghost.

Blogging over at Lash and Associates today...

Check it out...

http://www.lapublishing.com/blog/2013/job-brain-injury/

Someone else liked my writing enough to use it. Cool. huh?

Happy Valentine's Day!

I'm grateful that I do not have a giant bleeding tumor in my head anymore.

Looks like a giant angioma. Yikes!


Hearts for sale in Islamabad ss-130214-valentines-12.ss_full.jpg

Why blog?

It's been awhile since my last post. I write when I get this feeling that I have something I must say. Maybe, I have a moment of clarity, the Aha! moment when sense making happens. More likely, I write when I am in the throws of confusion and I seek some clarity.

I started this blog to keep friends and family appraised of my progress from the time I was diagnosed with a bleeding cavernous angioma. Besides my immediate family, I was not sure who else was reading. I told one teacher, she had taken me to the E.R. in the middle of the school day, and she did not pass on the message to my colleagues. My good friend Joh Kawano told me months later that she had guarded the existence of my blog like a secret. "I'm not sure she wants you to know," he was told.

Of course I wanted him to know! If I didn't want anyone to know what I was thinking or feeling I would not write it in a public place where anyone in the world can read it. That was the whole point of it, interested people could read it and find out what was going on. Everything happened so fast after my diagnosis. I had my first symptoms in school while I was teaching, a sudden headache and numbness spreading down the side of my face. It was days before I went to the doctor because I was the opposite of a hypochondriac. Then the delay waiting for approval to get an MRI as my symptoms got worse. Once the photo evidence appeared an angiogram to find out if the bleeding had stopped, we got opinions and second opinions about the surgery, and so on.

I continued writing after the surgery because I could express myself more clearly in writing than in speaking. At one point after I went back to work, in one of the many meetings that were called to address my issues, that same teacher (who had become my administrator at that point) said I could be very articulate or stumbling and bumbling over words. Writing helps me make sense of my experience.

Over the years, different feelings have come up when I found out who was or was not reading my blog. A couple of readers I with whom I was in communication turned out to be people who knew my father. It freaked me out a little that they had not told me. My family and a few of my work friends continued to read every blog post and encouraged me to keep writing. At the same time, people I considered my closest and dearest friends revealed that they had not really ever read it. Why would the people I see every day have more interest than the people I see less frequently? When things were going south at work, I was ordered to take down my blog. "A parent had complained," was the reason I was given.

Sometimes when I meet someone new, in the brain injury community or not, he or she expresses interest in my story. Rather than go into all the details, I refer them to my blog after a short summary. I figure that I transfer the power by giving access to the information. You may actively control the degree and quantity of information you get, as opposed to passively listening to potentially more or less that you want.

Recently I reconnected to a couple of my former students who are now in their late 20's. Both women revealed that they had seen and read my blog. One told me that she was concerned that I might not want to know she was reading or hear from me through my blog. The other was concerned that she might be violating my privacy. Both positions surprised me. If there was anyone that I did not want to read my blog, I would not post it on the Internet where the whole world can see it. I would love to know who is reading and I would love to hear from former students. My life or at least this aspect of it is an open book.

Two more things before I close, I will not put ads on my blog. I am not writing to make money and have no aspirations of being discovered (although it would be really cool if what I write was actually helpful or universally appealing). Secondly, I do not ever want to become the kind of blogger who writes out of a sense of obligation or attempts to cover specific aspects of brain injury. I stopped reading a couple of BI blogs because they gradually became less personal and started to sound like self-help books spouting suggestions. I don't have answers. I have a lot of questions. Writing this blog helps me articulate my pursuit of learning.

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"