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.