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.”
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