I'm Not Charley

Hello, my name is Odell! I was born in 1961. I have an Associate of Sciences and a Bachelor of Arts degree. I'm a Pilot, Photographer, Poet, Philosopher, Mystic, Writer, Musician, Amateur Astronomer, and for over 45 years I've been a professional computer programmer — and a lot more.

I mention these accomplishments because of something that happened in 2nd grade. I was falling behind academically, having problems learning to read and write. After much humiliation (my classmates constantly made fun of me) and testing, I was diagnosed as being “brain damaged.” My parents were told that I would never learn to read or write or have normal relationships or a normal life — in fact, that it would be best if I was simply placed in an institution. They were told they had three other children and another on the way, so it would be best for everyone. My parents disregarded this and kept me in school and “mainstreamed” me. I was held back and had to repeat 2nd grade.

Unfortunately, my parents were not the only people told of my diagnosis. My teacher was informed as well — and she told the other students about my problems. In fact, she told them that because of my presence in their classroom, they would not be getting the education they deserved. My sister, who attended the same school, has memories of walking by my classroom and seeing me sitting in the corner wearing a dunce cap. Throughout grammar school, my teachers treated me more as comic relief than as a student struggling to succeed. Junior high was a little better, as was high school.

It was not until I attempted to get into college and was rejected that I learned not to be ashamed of myself — and accepted the fact that I have dyslexia (not brain damage).

As you can see, the experts who suggested that my life would be devastated by my disability, and that the best I could aspire to was an institutional life, were wrong.

When I was in junior high school, I saw a movie called “Charly.” This motion picture was adapted from a story entitled “Flowers for Algernon” by Daniel Keyes. It is the story of a man named Charlie Gordon — a mentally retarded individual who suffered the same kinds of ridicule that I was enduring, yet who, like myself, dreamed of a better life and struggled to achieve it.

In the story, Charlie volunteers to undergo an experimental treatment to reverse his retardation. The treatment is much more than a success — Charlie goes from being retarded to being a super genius. Unfortunately, the results are only temporary, and Charlie must watch his new life slip away as his condition returns.

I found this story terrifying. I identified with Charlie and still do today. My biggest fear in life has always been the absurd idea that something could happen that would strip my mind from me and turn me from what I am into what Charlie became.

As I say, that is absurd — or at least it seemed that way until 2006. In 2006 I started having neurological problems: facial paralysis, walking problems, speaking problems, vision problems, memory problems, episodes of brain fog, hypersensitivity to sound, changes in sense of taste, balance problems, dizziness, tinnitus — to name a few.

I have worked with many different doctors — neurologists, endocrinologists, ophthalmologists, neuroimmunologists, neuro-ophthalmologists, ear, nose, and throat doctors, psychiatrists, and psychologists. I've undergone MRIs, PET scans, CAT scans, EEGs, sleep studies, blood work, spinal taps. I've worked with doctors locally and traveled to Rochester, MN to work with experts at the Mayo Clinic. I've been tested for Lyme disease, Parkinson’s disease, Guillain-Barré syndrome, brain cancer, paraneoplastic syndrome, multiple sclerosis, Lewy body dementia, epilepsy — but none of the tests have shown why this is happening to me.

I’ve been told that I most likely have something called Hashimoto’s encephalopathy. Then that name got changed to Steroid Responsive Encephalopathy, and then again to Autoimmune Encephalopathy — but there is no test that definitively shows you have it. All these names mean the same thing: my immune system is attacking my nervous system. Encephalopathy is any brain disease that alters brain function or structure.

I have undergone several forms of treatment. The first was high-dose IV Prednisone every month for several years. At first this was very successful — most of my symptoms went away or lessened — but over time the treatment became less effective, and I started having bad reactions.

The next treatment was a monthly dose of Intravenous Immune Globulin (IVIG). This was difficult — the treatment made me sick for several days afterward — but I was nearly symptom-free for a month after each treatment. Again, after a couple of years, the treatment became less effective.

I was then transferred to treatment with Rituxan (Rituximab). I was treated every six months. Each time, I spent four days in the infusion center, but afterward I would be nearly symptom-free for six months. Unfortunately, the doctor prescribing the treatment left practice. It’s not easy to find a neurologist who will even see me, let alone treat me. The new doctor feels that since there is no test that shows why I have these problems, I cannot be treated.

My last treatment with Rituxan was on July 21, 2019. Six months later, my symptoms began returning — and some have gotten worse. I now hallucinate every two weeks or so. I have constant dizziness and episodes of brain fog where, frankly, my ability to think just goes away. One time I was at work — I have no idea how long it lasted — but I remember looking at my computer screen and hearing this sound. I listened and finally realized someone was singing “The Cockroach That Ate Cincinnati.” Then I realized it was me singing. Only then was I able to think again.

A couple of weeks ago, my condition got to the point that I felt I was no longer able to work and have since gone on medical leave.

Next: The Hidden Problem with Time Travel

Previous: A few words on Caring!