What the Hell is Wrong with Me? by John B. Rosenman

 

Bread

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.

pants

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.

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

Blog: http://www.johnrosenman.blogspot.com

FB page: https://www.facebook.com/JohnBRosenman?ref=hl

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22 thoughts on “What the Hell is Wrong with Me? by John B. Rosenman

  1. Matthew Peters

    Fascinating, John. The protagonist in one of my books (Conversations Among Ruins) who is also a professor, experiences a similar out of body experience. I am so glad you were able to find the cause of your illness and get the proper treatment. It must have been a very terrifying experience.

    Reply
  2. Linda Hales

    Thanks for the enlightenment on gluten John. Congratulations of regaining your health and the realization that you’ll never be able to take it for granted again.

    Reply
  3. Cynthia B Ainsworthe

    John, I thoroughly enjoyed reading about your journey in dealing with Celiac disease. It can be difficult, as you know to nail down a diagnosis. You’re inspiring with those who are plagued such as yourself. I’ve had many patients in the same situation. A good gastroenterologist is one’s best friend.

    Reply
  4. John Rosenman

    Thanks for your comments. I wish I had stressed more the support my wife gave me during this ordeal and the support she continues to give me. Thanks to her, eating safely and gluten-free is now a habit. She has made so many sacrifices on my behalf, including cooking and eating gluten-free herself. I recall one time when I was sitting in the bathtub and I could not get my butt out of it. She got behind me, reached down and around my sunken chest and belly, and hauled me out. Losing strength is but one aspect of the disease. Yes, love is important, and I consider myself to be VERY fortunate, extremely lucky. I sat for many hours with my psychiatrist talking about . . . I don’t know what. Basically things like baseball and my writing and my meds because my problem was I was sick. I’ve got so many other health problems, including Barret’s disease, kidney and vascular problems, yada-yada-yada, but I’ve played seven or eight hours of tennis in the past two days and I’m not even tired. I hope just one person learns something from my post. I’d heard nothing about gluten or celiac disease before I was diagnosed. Yes, Cynthia, a good gastroenterologist can be a close friend indeed. I like my doctor, but he tested me for CD, and the test missed it. It took the GE to provide answers, and even then it was a long road back. Still, many people never return.

    Reply
  5. Trish Jackson

    What a great article because maybe you will help others who read it and don’t know what’s wrong with them. I’m very happy for you that your doctors were able to discover the root of your problems. I think more and more people are suffering from allergies, which in my opinion, could be because the products we eat are not what they used to be. So many foods are no longer natural. It seems like just about everything these days is genetically modified, or contains antibiotics or other foreign substances.

    Reply
  6. Anne Sweazy-Kulju

    Is it wrong to admit I enjoyed your post? I liked your bald-faced writing style, your great pacing and rhythm. But I especially enjoyed the way you attacked Celiac disease, face-on and aggressively, the same way that bugger attacked you! This post is a keeper. I am sharing it with my brother-in-law, in his mid-fifty’s and a pilot with Delta, who suddenly began having weird symptoms and digestive issues…until he read, “Wheat Bellies” and subsequently scoured the gluten from his kitchen.

    This was a great read!

    Reply
  7. Micki Peluso

    It’s probably not nice to say I gained comfort from this well written and informative article, but I did. I also had my hope reinforced that I might also overcome an isidious disease which also causes weird, unlikely symptoms. Yes, I got tested for gluten allery since I had text book symptoms of celiac disease, but it was my nemesis, Lyme disease mimicking it. You also helped explain why my own weight dropped along with appetite, something I would have loved if it didn’t take all muscle with it and leave hanging elephant skin. I do find wheat products, especially whole wheat bothers me–and of course I crave it. Thanks for an article which gives so much hope.

    Reply
  8. Monica Brinkman

    Okay, must say the students reaction brought a few tears to the eyes. I imagine, though you are very humble, it was quite the ordeal and you must have been so fearful. Thank goodness they found out what it was and you are here to share this and many stories.

    Well done.

    Reply
  9. James L. Secor

    Okay. This is my third try. Redirected twice before. So. . .corn spaghetti. No gluten. But don’t tell your friends you’re using this, they’ll squinch up inside. No difference in taste. I can now eat spaghetti without my belly bloating up forcing me to walk around like I’ve got a huge balloon of water sloshing around my middle.
    Interestingly enough, my problem waited til I had returned to the US after many years in China. (I was also 20 lbs lighter there than here.) Why is it gluten has recently become a problem? If it can be removed (from wheat, etc) was it there to begin with? or is it yet another additive?

    Reply
  10. Martha Love

    John, Celiac disease came over you so fast! I did not realize until lately that it does come over people so quickly, sort of out of the blue. In that way, it is a devastating disease and particularly frightening until one actually gets the diagnosis and knows what to do to heal. Even then, just eliminating wheat does not seem to be a fast recovery. My next door neighbor just got diagnosed with Celiac disease and I have been helping her come up with gluten free recipes. The lack of appetite and weight loss is so frightening for people. Sorry you had to go through this. I love your candid style of writing, by the way!

    Reply
  11. John Rosenman

    Anne, you know, my hematologist mentioned the book Wheat Belly. James, as to why gluten has recently become a problem, I don’t have all the answers, but one reason I think is that so many foods these days are processed unnaturally in plants. Industrial fans can easily blow crumbs from wheat products into batches of gluten-free stuff which are prepared in a separate area. So, cross contamination occurs. Martha, as to why CD comes over folks so quickly . . . one reason is it does its damage for months, even years inside you, then bam! all of a sudden the effects strike. I sometimes think, what the hell, I’ll have one or two of those forbidden foods or meals. What’s the harm? But even if I don’t notice any symptoms, and I have no way of knowing what would happen, the gluten would be doing its mischief internally. Folks, thanks for your kind comments. Again, my hope is that my experience will benefit people.

    Reply
  12. joylene

    Before I read a word, I knew you were going to say Celiac Disease. My husband is a survivor. He suffered for 2 years, essentially slowing starving to death, before they discovered the cause. I’m still shocked and amazed that it took them that long. Right from the start I asked if it was chronic bowel syndrome. No, was all I got back.

    Your story has a happy ending, and so does my husband’s. Thank you for educating others on this deadly disease.

    Reply
  13. Delinda

    Thanks for sharing. We discovered Celiac disease when our youngest foster daughter came to live with us. She was six and still only about 20 lbs. She looked like a two year-old. Fortunately there are many gluten-free products today and restaurants are more aware of the problem. Our daughter is 37 now and still must watch her diet closely. We think she does better on organic foods. I’m concerned about the effect of GMOs on her compromised digestive system.

    Reply
  14. Marta Merajver-Kurlat

    John, personal experiences such as yours provide insight and inspiration. For people who tend to wallow in self-pity over their own maladies, this is an extraordinary example of how one can fight disease while also thinking of others who are also going through rough times. Tank you for an exceptional read!

    Reply
  15. Rosemary "Mamie" Adkins

    John, how bold and brave to face down throats of our enemies. I like to believe that living with the motto to Never Give Up was why you are here today. You are a survivor stronger than ever I suspect.
    The candid style in which you presented this disease was truly enlightening and was educational, emotional and well written.
    Many people are finding this disease are at their door steps and the gluten war begins. However bland it may be, life is so much more precious and I find that natural herbs can spice up most anything.
    Best of luck with your journey and welcome to the group.

    Mamie

    Reply
  16. Linda Hales

    John and anyone else who may be interested, I have saved more than 200 gluten free recipes on my Pinterest site. From soup to nuts, from desserts to breads…gluten free has become a way of life in my home. That is not so say that I am gluten intolerant or perhaps I am to a minor degree, I but am a believer in avoiding refined and packaged foods altogether. I recommend virgin coconut oil, coconut sugar, coconut flour, raw honey and food never tasted this good. Enjoy!
    See my Gluten Free Foods at http://www.pinterest.com/linnievic/gluten-free-foods/

    Reply
  17. John B. Rosenman

    I’ve enjoyed all the additional comments. Joylene, so before you read a word, you knew I had CD? Boy, I wish I’d had you on the case from the start. You could have saved us a lot of grief! Give my best to your husband. I have found that wherever you can, it helps to find humor in the situation, though it’s easier to laugh in retrospect. Delinda . . . yes, sometimes the disease strikes you when you’re very young. Linda, thanks for your Gluten Free Foods link. Impressive! We plan to use it.

    Reply
  18. Sharla

    John, as I am late in readying your article, you may or may not view my comments. However, even though my experience with my husband was not Celiac disease, but pancreatitis, the devastating impact on the human body was still the same. His weight loss plummeted from 174 to 119. After over three months in a hospital bed, he finally has resumed a somewhat normal life. With such a toll, it will never be ‘normal’ because of so many restrictions but as you so gently put it “It’s a small price to pay for staying alive.”

    Thank you for sharing such a personal story, which should definitely help someone else in due time!

    Reply
  19. John B. Rosenman

    Sharla, I’m glad I happened to check. Yes, one of the points I made is that some of the symptoms of Celiac disease are nonspecific. The disease wears a clever mask, and its symptoms are similar and sometimes the same as those of other diseases. Three months in a hospital bed! I’m glad your husband has resumed a somewhat normal life. Like me he has restrictions, but when you consider the alternative . . .

    I hope my story helps others a little, and thanks so much for commenting.

    Reply

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