When I was young, my parents were told I would never amount to anything and would probably be in a Home, or institutionalized. When I was ten, I was diagnosed with Dyslexia. I found out when I was in my fifties that it was a misdiagnosis. I write a lot about my disabilities.
When I was homeless, I underwent neuropsychological testing. I was diagnosed with Dyslexia when I was ten, but it turns out that it was a misdiagnosis. Now a lot of things make sense.
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.”
I have a newsletter that’s free. Subscribe if you would like to read my stories.medium.com
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
I never heard of “Agenesis of the Corpus CAllosum, but once I researched the symptoms a lot made sense.
The Intriguing Consequences of a Lack of Communication Between the Two Hemispheres of the Brain
It makes things harder than they need to be
It must have distressed my parents when I was a baby when it was time to sit up, crawl, and walk. I didn’t reach those milestones when I was supposed to. My mom told me stories of how she would be in tears because I couldn’t understand how to tie my shoes.
My parents thought they had some clarity when the doctors diagnosed my Dyslexia. How surprised they would be if they knew. Years after they passed away I found out Dyslexia wasn’t my problem.
My brain is wired differently, not a big deal at all
It was an honest mistake, I guess. Missing benchmarks is also symptomatic of Dyslexia. The “ Brain Damage” trope my parents rammed down my throat also makes sense.
It makes sense because I was born with agenesis of the corpus callosum. The corpus callosum is a white matter tract. It connects the human brain’s two hemispheres.
It could be a problem, one side needs to know what the other is doing, I guess.
The corpus callosum allows the two hemispheres to communicate with each other. With agenesis, the corpus callosum doesn’t form, or The organ might not be there.
As you might imagine, when the two hemispheres of our brains can’t communicate with each other. There will be issues. It’s why I’m so clumsy and prone to messiness and disorganization.
It’s also why I overcompensate by doing things the same way, and it’s why I dislike change.
I grew up believing I was Dyslexic, but it appears that’s not true
Dyslexia and agenesis share a few of the same traits. Traits like sitting up and walking later than I should have. Having trouble learning to tie shoes is also a trait of Dyslexia and agenesis.
I thought it was interesting when I read the neuropsychologist’s report. It clearly stated that there was no evidence of Dyslexia. I had the symptoms. I understand how the doctors made the mistake when I was young.
ADHD is a common symptom of agenesis
I haven’t been diagnosed with ADHD. If I had I wasn’t told about it. I have some of the traits. ADHD is a common symptom of agenesis. I have always had trouble focusing and sitting still. When I was a child the doctors prescribed drugs to calm me down.
They threw the drugs away, I’m not sure it was the right thing to do
My parents threw the drugs away because they turned me into a zombie. I always wondered why I had a hard time sleeping at night. Insomnia is one of the symptoms. I read the myriad of symptoms and shook my head in amazement.
It was like reading the story of my life. A man is supposed to be able to assemble things work on an engine and change a tire. If you see me trying to change a tire get your phone out and record the show.
The video will go viral.
Anger and bitterness are wastes of energy, I’m trying hard to let it go
I spent most of my life bitter about my situation. I wondered why I had no talents or gifts. I was angry at my parents and God for putting me on the earth to take up space and not be good for anything.
I owe my late parents and my God an apology. I have the gift of writing and communicating. It took a lifetime to find those gifts, it took too long but I’m making up for lost time.
The past doesn’t matter, I’m doing better here and now
Bitterness served no purpose. The hand that I was dealt doesn’t matter. What matters is how I’m playing the cards I’m dealt with. I’m determined to make the later stages of my life the best part of my life.
Making peace with myself is the start of that journey.
Final Thought:
None of us are perfect. I’m finding out late in life the reasons I had so much trouble. It’s a struggle, but I’m doing my best to stop letting my limitations get me down. I’m working hard and I’m defying the expectations of doctors and family members.
Whatever limitation you have, keep fighting. Continue to learn and grow as a person. It will be harder for you than it is with other people, but the victory of overcoming will be sweeter. Whatever you do, don’t be bitter. I know from experience that bitterness will weigh you down and keep you from your goals.
Never give up.
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I was told when I was ten years old that I was Dyslexic, but the NeuroPsychological Testing I underwent in my fifties found no evidence of Dyslexia. The doctor said my “Was different.” There’s a host of differences in my brain and it explains a lot.
Did a Wrong Diagnosis of Dyslexia Hold Me Back?
I don’t know what to think
While I was cleaning out my Google Cloud storage, I came across the results of tests I underwent by a neuropsychologist and his team. I used my cellphone to photograph each page. I included the report in the paperwork I sent to apply for Disability.
I knew deep in my heart that Dyslexia wasn’t my problem
It’s been interesting reading, and it’s given me a lot to think about. The thing that jumped out at me yesterday when I was re-reading the report. I grew up hearing my parents talk about my Dyslexia. I was nine years old when the doctors diagnosed me with a learning disability.
“ Such a profile of Academic performance is not consistent with a language-based learning disability such as Dyslexia.”
Excerpt from the report from the Neuropsychology tests
“What the Hell?” I thought, To hear my parents tell it, I had all the symptoms. They reinforced the thought. They blamed Dyslexia for every setback and failure of my adult life.
Never mind the fact that other Dyslexics have productive lives, my Dyslexia was worse, or some crap like that
It was the theme of my life growing up, “ You were born with Dyslexia and Brain Damage.” I grew so frustrated with it. I told my dad once, when I was in my twenties, “Not everything is about Dyslexia, Sometimes I f_ up like everyone else.”
I have heard other people talk about Learning Disabilities. “ I never let Dyslexia define me.” Well, isn’t that special? It was beat into my psyche from the minute I started school.
Mom wasn’t forthcoming, she flat-out lied
Mom and Dad were holding out on me. One day out of frustration. I asked my mom, “The Doctors must have diagnosed something other than Dyslexia. Other Dyslexics are successful, why am I having so much trouble? What did the Doctors tell you?”
“ I don’t remember.” my mom answered without looking me in the eyes. The only time I caught her in a lie. I was in my thirties at the time. At this point, It doesn’t make any difference.
I ask myself, “What difference does it make?”
I try to put it in perspective, If I had known the extent of the cognitive issues I was born with, would I have given up? What should I have done? All I wanted was to have gainful employment and a family of my own. I never achieved those goals.
The thought of giving up never entered my mind. I was driven to work hard to show others I wasn’t feeble-minded and lazy. I also wanted to prove it to myself.
If I had known the truth, would things been different?
If I knew the truth what would I have done differently? I don’t know, but I suspect the knowledge would have been a crutch. I learned to work hard and never quit. If I had been a quitter I would have ended up where the doctors said I should be, in an institution.
Hopes and dreams are powerful. Would I have accepted it if I knew for sure that I wouldn’t get to where I dreamed of being? would I have muddled through life waiting for death?
In the past, I looked back and wondered what might have been, but what if it was never meant to be, to begin with? I’m not stupid. I have a writing talent. I proved that I’m a good communicator, and my growing YouTube channel has established that.
Better late than never, I guess
Why did it take so long to figure this out? The plan is to not worry about the timing. I am grateful I discovered my writing talent and I’m grateful for Medium and Illumination. The Illumination Publication and the Medium Platform have given me an outlet.
The question was, “Did a Wrong Diagnosis of Dyslexia hold me back?” I’m not sure it did. I’m also not sure what path I could have chosen that would have led to a fulfilled life.
I knew deep down Dyslexia wasn’t the whole story
I was diagnosed with Dyslexia at a young age. As I grew older I had the nagging feeling that Dyslexia wasn’t the reason for my dysfunction. I found out years later that my feelings were correct.
Knowing the truth has no practical benefit. I’m on disability and will never get fired from a job again. The information has given me a certain amount of peace, but I can’t help feeling angry and bitter.
I have a lot of time now to do what makes me happy
I’m not proud of that, but I always try to be honest when I write. There is a bright side. I have more time to write and make videos. My content entertains and helps people. It took a lifetime, but I’m doing what I’m supposed to be doing.
My past has helped me be productive in the present and I provide value for people, so it’s all good.
Final Thought:
It’s hard to get out of the box life puts you in. Your hopes and dreams Life thwarts your dreams every chance it gets. Never lose hope. Keep trying to find your way and do what you can to be happy. If God wills it, you will get to where you’re supposed to be.
Mom and Dad Held Out on Me, but What Difference Does It Make?
Questions without answersmedium.com
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