The Disturbing Reality of Cognitive Dysfunction
I Learn Something new about myself every day
Unveiling the Disturbing Reality of Cognitive Dysfunction
I learn something new about myself every day
I was in my mid to late fifties and I thought I had it made. For the first time in my adult life, I had my own home and was paying my bills. I was a security guard and I was living in a crappy trailer park, but I thought I was doing great.
For the first time, I was getting out and having a social life. I missed my uncle and parents, but I was living my life and I was happy. My self-confidence had never been higher.
Things were not the same after the stroke.
I confuse people, my Psychotherapist in Minneapolis summed it up. “ You perform at a high-functioning level in many areas, but in some areas you don’t.” Before the stroke, I could pay my bills and make decisions.
The stroke revealed all the problems and magnified them
After the stroke not so much. I ended up homeless in Minneapolis because of circumstances and bad decisions. When I was on the streets I was able to get State-funded insurance. At one point my primary Doctor suggested I see a Psychotherapist.
During one of our sessions. My Psychotherapist asked me if I would be willing to undergo neuropsychological testing. I told her I was willing to do it. The testing was to last a full day, but the Doctor cut it short before noon. I was too stressed. The Doctor thought I would have a stroke or a nervous breakdown.
I found the report when I was cleaning out my online storage
The Doctor wrote a thick report and gave it to my Psychotherapist. She gave me a copy I sent to Social Security when I filed my Disability claim. Before I sent the claim off, I used my phone to take a photo of each page. I found the report yesterday while cleaning out my Google Cloud Storage.
I had always wondered why I had so much trouble adulting. why were simple things that most people take for granted so damned hard for me? Well, now I know why.
My brain’s a mess, and there’s not a lot I can do about it
The corpus callosum is an important part of the brain.
If you saw me in action, at work, or in my daily life, you would notice how clumsy and awkward I am. A lot of that can be attributed to “corpus callosum syndrome.
I can’t do anything in a hurry; Because if I do, I will break things or lose them, and I will make a mess. I have been labeled as “Slow” my whole life. It’s frustrating.
I don’t know how often a parent, supervisor, or co-worker had to fix or find something I lost or broke. They tried to have it both ways, but it wouldn’t happen.
I was talking to a co-worker once. He had told me about his Dyslexia. He said something that I will always remember. “ We’re not slow, we’re deliberate.”
I wish my wife and family understood that.
What is it like to have a close friend? someone to hang with and talk to for hours?
Impaired social functioning is a well-known outcome of people with agenesis of the corpus callosum.
It amazes me that I began dating. I started in my fifties, but at least I did it. The fact that I let a woman get close enough to me to marry still amazes me after seven years.
I make simple things difficult and I take too long to do it
Everything I do is difficult and done later than it should have been done. It doesn’t bother me as much as it did in the past. I’m grateful to have accomplished anything at all.
When I was a child, the doctors told my parents I would end up institutionalized. It hasn’t come to that point. Meeting my wife on Facebook saved me from that fate.
The one thing that by turns upset me and amused me was my physical awkwardness. I’m like the proverbial bull in a china shop. I’m a klutz. I’m notorious for my poor hand-eye coordination.
I also have frequent headaches that at times are quite severe.
I’m a klutz for a reason
It started before I was born. Sometime between the third and twelve weeks of Gestational life the fetus that was me caught a disease called Agenesis of the corpus callosum. It’s a rare congenital disorder that strikes when the fetus needs it most when Neurological development is at its peak. My parents told me that I sat up and learned to walk later than I should have.
Everyday things you take for granted, are things I have trouble doing
Most adults juggle bills, I tried to do that when I was on my own. I had help when I was living with my family, but things changed when my parents and my uncle died.
I need to remember dates, but I can’t. If a family member has a birthday or anniversary, I will not send a card or make a call. If I don’t see the notice on Facebook the event will pass me by.
I need to see various doctors often and have difficulty keeping appointments straight. When I’m done with my appointment, and it’s time to reschedule, I tell the person behind the desk to write it down. I will get the date wrong if it’s not written down, or I will forget it altogether.
Ninety percent of my problems lead back to agenesis
I also have poor motor coordination, which is also a symptom of Agenesis. The klutziness and forgetfulness have always been a problem. When I was a child I didn’t reach developmental milestones when I should have.
I learned to walk later than most children, and I took forever to learn how to tie my shoes.
The stroke took away my ability to hide from the problems I was born with
The problems got worse in 2013 or 2014. I can’t remember the year, but I had a stroke.
It turns out it wasn’t one stroke, but a series of mini-strokes that happened rapidly. It was as if I was drunk after hours of drinking, but it happened in minutes and got worse as it went along. I didn’t realize how much trouble I was in, so I called off work and went back to bed.
I was having strokes without realizing it, and it was quite a revelation for me
The medical report stated there was evidence of prior strokes. The strokes may have been asymptomatic, or I didn’t recognize the symptoms as strokes. I’m fortunate that there wasn’t a worse outcome.
I lost my home and the ability to hold a job, but I can still walk and talk, I’m not bedridden and I can write. I know now that I need help. I’m glad I have a wife who loves me and is willing to help.
Perhaps the Doctors overstated things, but maybe they didn’t
The Doctors told my parents when I was a child that I would never hold a job and function in society. Their prognosis wasn’t accurate, but I still didn’t excel or progress as I should have.
Or, maybe the prognosis was more accurate than I wanted to accept. Looking back, it might have been a blessing to live with my parents for as long as I did. I screwed up my chance of living on my own.
I didn’t understand the depth of my problem
I didn't understand the depth of my cognitive issues. If I had a clearer picture of what I was dealing with, I would have sought help in Florida. I was trying to do things on my own because I’m a middle-aged man, and I should act like one.
I beat myself up for years but I’m learning that it wasn’t all my fault. I’m learning to understand and accept my limitations and I’m happier doing that. I’m not wasting time with anger and regret.
Final Thought:
None of us are perfect. We need to understand our limitations and work around them. We need to cut ourselves some slack. We can’t do all we want to do but we can still do a lot. Don’t waste time with anger and regret. Never give up, work to overcome your difficulties celebrate the victories, and forget the losses.
Life goes on.
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More information about Agenesis.
When I was young, my parents were told by doctors that I was, “ Brain Damaged.”
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White matter disease as a biomarker for long-term cerebrovascular disease and dementia
White matter disease is commonly detected on brain MRI of aging individuals as white matter hyperintensities (WMH), or…www.ncbi.nlm.nih.gov
Paul, L. K., Schieffer, B., & Brown, W. S. (2004). Social processing deficits in agenesis of the corpus callosum: Narratives from the Thematic Apperception Test. Archives of Clinical Neuropsychology, 19(2), 215–225. https://doi.org/10.1016/S0887-6177(03)00024-6