In November 2002 I wrote an article entitled “Beyond the Graves” for Indianapolis Monthly Magazine about life with a chronic illness, in my case Graves Disease.
Looking back, it was likely the beginnings of MS. Here’s the story:
“Uncle Mike, what’s wrong with your eye?” my young niece Jessica asked me during lunch not too long ago.
She is six years old, and I adore being asked something by her, adore being engaged somehow in her life. And it was a fair question. Because there is something wrong with my eye—actually it’s the socket that’s not quite right, but no one sees that part. They just see a right eye that’s somehow different than its counterpart, and when I study it in the mirror—pretty much daily now—it seems to stare back at me, locked forever in a state of semi-surprise, a sort of creepy, noncommittal response to a “Boo!”
“It’s hard to explain, Jess,” I answered, looking down at the table. “I guess the best I can tell you is that my eye’s sick.”
“Jessica, don’t ask Uncle Mike about his eye,” her mother interrupted.
“It’s alright,” I said. “It’s just hard to explain, Jess. I’m just sick.”
“When will you be better?” she asked.
“I don’t know, sweetheart,” I said. But I do know, and the answer is never.
What is wrong with my eye is caused by a chronic condition known as Graves Disease. The disease itself—a malfunctioning thyroid gland pumping oddball amounts of hormone into me—is treatable with drugs, radiation or removing the thyroid altogether. But without corrective surgery, my big eye will be with me from now on, forever a picture window into my soul instead of just a regular-sized one. And like its chronic cousins, lupus, diabetes, Crohn’s Disease and the rest, my condition may “present” itself when I least want it to—always.
Physicians use the word “presents” to describe how an illness shows its symptoms; my thyroid condition “presented” itself by inflaming the fatty tissue in the socket of my right eye, making it too small for the eye to fit. Crohn’s can include debilitating diarrhea and abdominal pain, diabetes a lifetime of fainting and insulin shock and worse. I know a woman who had lupus and she was always pale, always tired and frail. But the common denominator with all chronic conditions is the other “present”; they’re always there, lurking in the periphery of your life to remind you of just how vulnerable, and how very mortal, you really are.
Thyroid disease can be hereditary, and my mother and sister both have it, though neither have Graves. Over 14 million men and women in this country suffer from thyroid imbalance, most of them undiagnosed, according to the Thyroid Foundation of America. Experts often associate stress and smoking as contributing factors, but beyond a genetic disposition, no one knows for sure what causes thyroid disease, let alone what factors activate it in families who share the affliction.
Graves Disease normally strikes between the ages of 20 and 40 and affects ten times more women than men. The hormonal imbalance that accompanies it can cause sleeplessness, changes in libido and weight loss, mood swings, anxiety and erratic behavior, muscle weakness, heat intolerance, fatigue and sometimes trembling hands or even tremors. The first presentation was likely in my hands. But I wasn’t looking for it.
Returning from a trip to Jamaica I’d noticed my fingers were tingling. Carpal tunnel from writing I figured. But I’d smoked some very strong ganja in Jamaica—maybe that was it. I went to a doctor but declined to elaborate on my drug use; she told me to keep an eye on the tingling that disappeared ten days later.
When you look at yourself each day in the mirror what do you see? Really? Change is easier to see in chunks, like comparing the streetscape at the turn of the century with the same shot 100 years later. At the time, 1997, I was 37 years old. I smoked, I drank and to some degree I drugged. At 5’ 10” I weighed nearly 220 pounds. Maybe if I’d been more alert I would have seen my changing eye, but through my lifestyle I was keeping myself blind by choice.
At a family gathering later that year a relative asked me, quietly, if something was wrong with my eye. Guessing it was hay fever I brushed his question off. But then my wife and I ran into my parents at the mall. After we talked for a little while my mother asked me what was wrong with my eye.
“Thank God you noticed it,” Michelle, my wife, said to my mom, “I thought it was just me.” The three of them gathered around me so they could examine the eye in unison. Right there in the mall. After a thorough review they concluded the right eye was bigger. After that conversation turned tight; we cut our shopping trip short and drove home in silence. Now I looked in the car’s vanity mirror and now my right eye did look bigger, like it had grown that very day and now, looking for it, looking at it, it was blindingly obvious. And now I noticed the street had changed, forever.
The trouble with diagnosing some chronic conditions is that they share symptoms. Sitting on the examination table, Lisa, my doctor, said there were a few conditions that could cause the eye to protrude. It could be Graves Disease. Or it could be a tumor. Or it could be something else. X-rays of my head were the first step in discovering the truth; the upside was I would now have proof that something was in fact in it.
A week after the X-rays I sat in Lisa’s office again. There was no tumor she said, but the initial diagnosis was equally jarring. “There are scars on the myelin in your brain,” she said. Myelin is like an insulator around the nerves. Scarring, or deterioration, can lead to “cross talk” that causes all kinds of problems. The scars, she explained, may have been there since I was born, or developed along the way. Or they may have been an indication of the onslaught of multiple sclerosis.
The 10-minute drive home couldn’t end soon enough; my mind was drowning in fear, fear from what little I knew about MS, fear that I’d end up wheelchair bound, fear that I’d be unable to write for a living, fear that my life, so free for so long was irreparably changing. My years of excess and indulgence were hideous on a grand scale now, and like anyone on the edge of forever losing something suddenly precious, I cried.
Diagnosing MS is hard; there’s no single “test,” no blood work, no X-ray. I surfed the web frantically, trying to learn as much as I could about the disease, discovering the varying types, the most severe leaving its victim in a wheelchair and in need of extensive assistance and care. I prayed hard for the other, a milder, more manageable version. But the Internet is a gluttonous library, and if you’re not careful pretty soon you’ve “got” everything. A sneeze turns into a seizure; a restless night quickly becomes incurable insomnia.
A cat-scan followed, and then a trip to a neurologist. After a long wait in the exam room a disheveled doctor blew through the door. “Hello Mr. Knight. Sorry to keep you waiting,” he said. Thumbing through my file, he looked up and said, “Now tell me, what exactly are you here for?” Of such huge significance to me, the question was not even on his agenda as my caregiver. Furious, I explained that I was trying to find out if I had MS. After a battery of tests, which included tickling me with a feather and pricking me with a pin, he told me I didn’t have multiple sclerosis. Somehow I found it hard to believe a guy who looked like a janitor, and whose exam would have been at home in a Three Stooges film.
Finally I was diagnosed with Graves Disease by a neuro-opthomalogist. Its physiological symptoms—like nervousness, erratic behavior, intolerance to heat and others—were in full bloom. And I had finally quit smoking. Everything. Now happy go lucky me was replaced by very intense me. Very intense me. Driving behind the dearest little grandmother on Kessler Avenue one afternoon with my wife I laid on the horn because she wouldn’t get out of my way. “Michael!” Michelle said. “What’s wrong with you?” So troubling was the experience that now she watches for strange behavior and is prone to asking me if I’m all right.
I was prescribed a daily regimen of Synthroid, a therapy designed to get my thyroid back in balance. The pill was hard to take; not hard to swallow, but it couldn’t be taken too close to meals, nor too far after. “Did you take your Synthroid” now preceded “good night.”
But beyond taking the medicine, which for me wasn’t that big of a deal, chronic conditions extract a daily toll paid in the form of physical or mental currency, or some combination of both. Most times dealing with Graves Disease was an abstract issue free of pain—outside of a runaway eyeball, it was a matter of coping with a chemical makeup gone wrong, and the side affects and problems it caused, in my case, mostly sleeplessness and anxiety, an evil axis of emotional dictators. For others with Crohn’s or diabetes or lupus there’s medicine and treatment and physical trauma on top of the mental gymnastics. Living with a chronic condition meant adjusting my life to the what-ifs the disease presented; working weekends when I was too tired to work during normal workdays, staying home when we used to go out and constantly repairing the damage done by not sleeping in the same bed with my wife, not because I didn’t want to, but because I simply could…not…SLEEP. Knowing that you may have to succumb to your condition on any given day or at any moment is what makes it chronic. And to be sure, the Devil is in those tiny details, the small, nagging psychological battles that are hard to win because you’re at war with yourself. The outcome of course is constantly not feeling right or like you used to, a concept gone but not forgotten and one sure to only add to the solitude of your struggle.
For my particular affliction, occasionally there were times when I would forget that I even had it, a victory in itself. And then I’d look in the mirror or I’d see someone look at my face and I’d wonder if they were looking at me or at it, a notion confirmed by my niece’s unbridled honesty. I don’t look quite as shocked as fellow Graves Disease sufferer Barbara Bush. Nor am I quite as goggle-eyed as the late actor Marty Feldman, who used his affliction to such great comedic effect. Still, there’s only so long you can keep your sunglasses on before people think you’re on drugs or hiding something, an irony not lost on me. So I don’t explain it to people unless I’m forced to, either by an inquisitive look, or by looking strung out from lack of sleep—it’s too obscure other than to say “I have the same thing Barbara Bush does” and move on, assuming the listener will know it’s not a son illicitly elected president.
Just now I am a few months removed from my last Synthroid tablet, by doctor’s orders. The disease can go into remission, but blood tests, taken every two or three months, are used to monitor its condition. I run some 25 miles a week, weigh about 170 pounds, and mentally am in the best condition of my adult life.
In some ways I was reborn the day I found I had Graves and not MS. I have it so easy compared to so many others. But I am three months past due getting my blood work done. There are stretches when I just can’t sleep, and am so tired that it feels like there are bees buzzing in my head. My hands are tingling again. Carpal tunnel, right? We went yesterday to get the blood work done, and now I’m waiting for the results. And I’m worried about it, because I’m afraid of what might present itself next. Ironically my eyes are open wider than ever to my own vulnerability and mortality—and sometimes I wish I could get them shut.