A mysterious disease three years ago almost killed me.
The progression of this disease was insidious and terrifying. My doctor used every test in the book without success to diagnose it. Finally, as I wasted away, he threw up his hands and admitted he didn’t know what my disease was. Darker possibilities emerged. Was my disease cancer? Was I going insane? Was I going to live?
I’m a member of a writers’ community at The Write Room Blog. We post individual blogs at the site. Just click on the link at the end of my blog below and view the site where my blog “What the Hell is Wrong with Me?” and other blogs are featured.
WHAT THE HELL IS WRONG WITH ME?
I was teaching my 9 a.m. World Literature class about three years ago, when I noticed my brain was floating about five feet above my shoulders. What’s more, it wasn’t floating in a good way. I felt disconnected, disembodied, unreal.
What in the world was happening to me?
I was nearing seventy, a full professor of English, and planning to retire from Norfolk State University after forty-five years of teaching. I had never experienced anything like this before. Should I excuse my class early and lie down, or be a man and soldier on?
Hell, I was as macho as the next guy. I soldiered on. The fact that I was undergoing an out-of- body, semi-psychotic experience didn’t mean I couldn’t pull it off. I was a pro! So on I charged, fielding students’ questions out of the air, and I believe, passing the test with flying colors.
As I left my class, my affliction lifted. For the rest of the day, I was fine. My relief was fine, too, and I didn’t even mention the “incident” to my wife Jane.
The next day, with classes meeting later, I was absolutely normal.
The following day, with my World Literature 9 a.m. class, my brain drifted to the ceiling again, hovering near the light fixtures. In subsequent 9 a.m. classes, that’s where it remained.
I told my wife about it, and she reminded me that a few months back, I’d had arthritic pains in my right arm. They had interfered with my playing tennis, which I love. A visit to my doctor and some meds seemed to have solved the problem, but could there be a pattern here?
We soon learned there was. Starting at 150 pounds, I began to lose weight. Finally, I went to Dr. B again. He ran all the tests, which turned up nothing. He concluded that my symptoms “screamed depression” and referred me to a psychiatrist who gave me pills. My weight continued to drop. One forty-five . . . one-forty-two. When it reached one-forty, my system began to shut down. Forget about having an appetite, sleeping, or going to the bathroom, and hello to a half-body hideous scarlet rash which itched like the devil and eventually no damned energy whatsoever.
One day in his office, Dr. B said he’d done as much as he could. He’d run all the tests and didn’t know what was wrong with me. In short, I had a MYSTERIOUS DISEASE, a subject I’ve written about in fiction, as in “The Blue of her Hair, The Gold of her Eyes,” where a woman contracts a disease that makes others shun and fear her. I looked at my doctor and said, “Could I have cancer?” He replied, “Do you want to go and have a CT Scan?”
Well, I had it, and the Scan revealed a discolored area in my lower intestine. I’ll never forget the day Dr. B asked, “Did your wife come with you?” Folks, take it from me, when you see your physician, one of the last things you want him or her to ask is, “Did your wife [or husband] come with you?” I said my wife was present and he went and got her, and we all convened in the examination room. The only things missing were a Grief Lady and Chopin’s Funeral March. Dr. B held his fingers an inch apart, indicating the size of my probable cancerous tumor, and I smiled with as much fortitude as I could and kissed my ass goodbye.
Hallelujah, it wasn’t curtains! I’ll skip some painful details. Another CT Scan, some more blood tests, and a gastroenterologist would finally, finally, nail it down. I had Celiac disease, a severe allergy caused by gluten, a protein found mainly in grains such as wheat, rye, and barley. This digestive disease can be hard to diagnose because it has over 250 symptoms, and no two cases are the same. Also, many of its symptoms are nonspecific and can occur in other diseases. Celiac disease is often but not always genetically inherited, and in my case, it had lain dormant in my system for the unlikely period of nearly seven decades. One out of 100 people has this condition, but more and more folks are finding themselves affected in this age of processed foods. As for my floating brain syndrome, my hematologist told me last year it’s a psychotic effect some of those with Celiac disease experience as a result of eating wheat.
After I was diagnosed, the process of recovery was slow and torturous as the villi in the inner wall of my small intestine which absorb food and nutrients had to recover and straighten. Indeed, despite my efforts, I continued to lose weight. One thirty . . . One twenty-eight . . . One twenty-five . . . One twenty. If I turned sideways, I disappeared in the mirror. I was so weak, I couldn’t even run, and it was a struggle to dress myself.
One day, still a bit blotchy with an itchy red rash, I gazed at a class of students I loved and told them I could not continue. We had begun a literary journey of the creative imagination together, I said, and I wanted so much to complete it with them. Try as I might, though, I would not be there to reach the finish line at their side except in spirit.
It was painful to say this. I knew it wasn’t my fault, but I still felt I had failed them.
Then something happened that had never happened before in all my years of teaching.
Every student in my class rose to their feet and formed a line around the room, waiting patiently to hug me.
Some of them even hugged me twice.
Back at home, I was semi-bedridden for about a month. Talk about being limp, listless human meat. My wife climbed the stairs and brought me my meals, which I could barely eat because I had no appetite. I came to hate the sight of those eight ounce bottles of Ensure which I was forced to drink because they provided 350 calories. I sometimes think Jane kept me alive, that I’d be dead except for her.
Lying there, I came to empathize more and more with the sick and afflicted, especially those sicker than me who might lack the benefit and comfort of insurance, doctors, and caregivers. All we have are our bodies and our spirits, and our health and our senses can be taken away in a heartbeat. I already knew this of course, but it bears repeating. We don’t own our good health, our good looks, our success, or the fortunate way our brains are wired. We don’t possess them because of any moral or spiritual superiority we have over others, or any special favoritism we have received from God. Recently Mary Firmin wrote an essay entitled “Alcoholism.” Some people are blessed enough to be able to drink a beer or a glass of wine without risk of addiction. For others it’s like walking a tightrope above an abyss. In some ways alcoholism is a mysterious disease, too. Some of us are just luckier than others.
Dear Reader, if you type Mysterious Diseases into your browser, you will find all sorts of strange, bizarre, and often unsolved and incurable maladies. Perhaps new ones will appear in the future, and it will be impossible to prepare for them.
As for me, my doctor informs me I’ve made a “tremendous recovery.” Thanks to Prednizone, a steroid, I developed a voracious appetite and finally managed to gain weight, although later it caused a cataract to ripen in my right eye that half-blinded me overnight. Today I weigh as much as I did before and live an almost normal life. However, while my disease is in remission, it remains, and I must take meds daily for it. Above all, I must avoid gluten at all costs. For example, if I go to Wendy’s or any other fast food place, I take my own gluten-free, poorer textured, and less tasty bread if I want a sandwich, avoiding their wheat-packed buns and flavorful varieties such as the one featured at the front of this essay. Also, I shun items such as macaroni, doughnuts, and greasy pizza, no matter how much I crave them.
It’s a small price to pay for staying alive.
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John has published twenty books and three hundred short stories, most of them science fiction, speculative fiction, fantasy, horror, and paranormal romance. He’s the former editor of Horror Magazine and Chairman of the Board of the Horror Writers Association. Recently, he’s focused on his Inspector of the Cross series which features a 4000-year-old hero fighting to save the human race from seemingly invincible aliens.
Web site: http://www.johnrosenman.com
THE WRITE ROOM BLOG link: http://www.thewriteroomblog.com/