Learning to ride, falling down, getting back on
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I’m sitting in my new primary-care physician’s office discussing the hypoglycemia, fatigue, headaches, and food allergies that have been nibbling away at me for the past fifteen years, like so many hungry mice. I don’t really want to be here; I already know there’s nothing she can do for me. But my health insurance is paying for the office visit for a change (if you don’t count the hefty twenty-five-dollar co-pay), so I’ve really nothing to lose.
“Yes, I understand that all my tests are within the normal range,” I say to the doctor, “but I don’t feel normal. I feel sick.” Worried this doesn’t cover it, I add, “Really sick.” My voice sounds whiny and petulant even to my own ears, as if I were a kid trying to get out of school for the day. I wouldn’t believe me, either.
The doctor is a slim Asian woman. “You understand, Mr. Neipris,” she says, “that medicine is not an exact science. Have you thought about counseling, maybe a psychiatrist?”
I try to feel outraged, but I just don’t have it in me. She’s doing the best she can. Besides, there’s always the chance she’s on to something.
The worst doctor I ever went to was the only one to promise me a cure. The diploma on the wall behind his desk certified that he had successfully completed the course of study required of naturopathic physicians. This mattered little to me. I cared only that he said he could help me.
Two hundred twenty dollars for vitamins? If you say so, Doctor. Two hundred seventy-five for herbal supplements? Absolutely. Three hundred fifty for a case of your special protein drink? Not a problem. I couldn’t write the checks fast enough. Sickness does something to a man, makes him soft, pliant, willing. Desperate to believe.
He was a big fellow with a large head and coarse, masculine features. “Your liver,” he would say, banging his meaty thigh for emphasis, “is your foundation. Build up the liver, and everything else will fall into place.”
Of course. The liver. How simple. I’m a recovering alcoholic. How could my liver not be messed up? He’d have me near weeping with hope and gratitude. I think I was half in love with the guy. Every day I’d swallow great handfuls of supplements, washing them down with his specially formulated protein drink. At his behest, I spent my days prowling the aisles of health-food stores, looking for goat cheese and soy milk, tofu and veggie burgers, manna bread and alfalfa sprouts.
Like most infatuations, it ended badly. After six months, no better and considerably poorer, I called to break it off. Recriminations followed. He accused me of being a quitter. I accused him of being a rip-off artist. He sent me a letter pleading that I reconsider. I sent him a letter demanding the return of my three thousand dollars. In the end, he agreed to take back half a case of unopened protein drink and a couple of bottles of vitamins. It wasn’t much, but I felt it was important to move on with my life.
I used to think of my health, to the extent that I thought of it at all, as immutable. But mostly I gave it no more thought than the air I breathed. Certainly, I had no capacity to appreciate it as something that could be fundamentally altered in any way. It was only after my health had departed — seemingly just flew off one day like some startled bird — that I began to understand that I had been mistaken.
As sick as I sometimes feel, mainstream medicine, with its one-size-fits-all approach, has nothing to offer me. My blood tests fall within acceptable parameters. My heart and lungs are fine. I’m not too fat or too skinny. I don’t look unwell. After reviewing all my tests, my last MD shrugged his shoulders and cheerfully observed that some people just don’t feel well much of the time, in just the same way he might have said that some people don’t like chocolate ice cream: a puzzlement perhaps, but nothing to get too worked up about.
There is something inherently isolating in illness, all the more so when one is deprived of the dignity and comfort of a respectable diagnosis. Many in the medical profession don’t accept that my form of hypoglycemia — a syndrome characterized by frequent hunger, weakness, and fatigue in the presence of what are considered normal blood-sugar levels — even exists. One doctor, the anesthesiologist for some minor surgery I was to undergo, said with just a touch of condescension, after I explained that I was hypoglycemic and shouldn’t be without food for too long, that he hadn’t lost a patient yet just because he or she had missed breakfast. Another doctor, a well-known endocrinologist at one of Boston’s leading teaching hospitals, informed me that despite the nearly constant hunger that compels me to eat as many as ten small meals a day, I couldn’t possibly be suffering from hypoglycemia because the relief I get from eating occurs too quickly to be related to blood sugar. He also assured me that, given my normal blood-sugar levels, I could expect my symptoms to go away, probably in a matter of months. That was more than ten years ago.
All of which has led me to wonder whether perhaps I might be suffering from some peculiar form of insanity. I have no ax to grind, to the best of my conscious understanding, no vested interest in my own continued illness. I can assure you, I would much prefer to be well than unwell. The truth is, if I thought it might help me feel better, I’d be perfectly willing to believe that this vast swamp of migraines and fatigue, of vague malaise and low body temperature, of food allergies and sinuses that throb so painfully the tears sometimes flow, of trembling weakness so debilitating there are days I can hardly get out of bed, of the maddening itch in my right ear and a sensitivity to noise that at times is so exquisite I think I might go mad — that my whole bewildering array of symptoms, ranging from the merely annoying to the genuinely disabling, is nothing more than the product of my own imagination. God knows, I didn’t go to a top medical school, work my way up through a demanding internship and residency, or publish research papers in important medical journals. What I know about medicine would fill a small thimble. All I have is my own experience, and much of the time, I have no idea what to make of it.
I first heard about Nambudripad Allergy Elimination Technique, or NAET, from a physician who had been treating my food allergies with something called “enzyme potentiated desensitization” — an arduous, still experimental series of injections that offers hope to people suffering from certain difficult-to-treat immune disorders, such as food allergies and multiple-chemical sensitivity. When the FDA halted trials on the injections due, to the best of my understanding, to a paperwork snafu, I was once again left desperate for some kind of treatment.
A typical website describes NAET as “the premier technique for pain-free, drug-free allergy elimination, incorporating concepts from energetic medicine — especially acupuncture and chiropractic — along with Doctor Devi Nambudripad’s genius and inspiration.”
As to Dr. Nambudripad’s genius and inspiration, I am not qualified to comment, but it does appear that the technique has helped many. A quick Internet search reveals dozens of websites packed with testimonials from sick people made well.
Although I had a deep-seated mistrust of terms like “energy imbalance” and “flow” — and a difficult time accepting that something as intractable and debilitating as food allergies could disappear at the mere insertion of a few acupuncture needles — I decided to give it a try. After some searching, I was able to find a woman who combined NAET with a technique called BioSET. Both of these treatments rely on “muscle testing” to identify allergens and, in the case of BioSET, bodily organs and systems that are somehow “out of balance.”
I thought I had succeeded in swallowing my skepticism concerning the muscle testing. Then I saw that although each substance to be tested was placed in my hand, it remained sealed in its little glass tube. “But how can my body react to something if I can’t touch or smell it?” I finally asked, as she pushed down on my arm for what must have been the twentieth time that day, as if I were a pump in need of priming. I was tired and cranky, and my shoulder hurt. Perhaps my tone revealed more than I had intended.
She was a short, fat redhead with a fondness for black stretch pants and hoop earrings. It was plain she did not like me. “Look,” she said, “if you want to get well, it’s crucial you believe in what we’re doing.”
I mulled this over for a moment. I wanted to believe in what we were doing, of course, but at the same time, it seemed to me that it shouldn’t matter what I thought: either the thing worked or it didn’t.
Over the next several visits, we made our way through dozens of little glass tubes. At the end of each session she would treat with acupuncture the organs that had been shown to be weak. Many required multiple treatments. As I recall it, my pancreas and, of all things, my corpus callosum were particularly stubborn.
One day, I casually asked her if it was normal to suffer sinus headaches after acupuncture. I had been noticing that sinus pain regularly cropped up a few hours after I’d left her office. She said yes, that it was a sign that my body was “detoxifying,” an answer that would have been fine with me were it not for the fact that, the week before, in response to the very same question, she had said no, that it was not normal. When I pointed out the inconsistency, she angrily accused me of not respecting her work.
“But I do respect your work,” I protested. To my dismay, I realized I was lying.
Every couple of years, I take down from the bookshelf a battered copy of Anatomy of an Illness, in which Norman Cousins claims to have recovered from a nearly incurable illness by means of an upbeat attitude, laughter, and megadoses of vitamin C. I think Cousins is on to something. If nothing else, were I somehow able to implement his suggestions, I would be a “happier” sick person.
From time to time I do take a stab at addressing the gloomier aspects of my personality. I know they’re not healthy. But the habits of a lifetime don’t give way easily. Even as a kid, I was quiet and moody and generally off by myself, obsessing on life’s dark side. I ruminated on everything from the atom bomb (this was the 1950s) to the troubling fact that the sun would burn out one day.
As I grew older, my natural pessimism only deepened, and I began using alcohol as a kind of antidote for this. But when I sobered up in my midthirties, it was as if I had suddenly reawakened to the reality of a fragile, dangerous world. I became a worrier, routinely seized by one horrible thought after another: my tire could blow out; my house could catch fire; my dog could get hit by a car; I could get hit by a car; I could go bald; I could get audited; I could fall off my bicycle, fracture my skull, and slip into a coma; I could fall off a bicycle, not fracture my skull, and slip into a coma anyway; I could catch cold; I could catch the flu; I could catch AIDS; I could fall downstairs; I could fall upstairs.
This can’t be good for me. There’s a theory that disorders like mine — hypoglycemia, food allergies, chronic fatigue, and others — are the result of exhausted adrenal glands. People like me have worried, worked, eaten, drunk, or in some other way dug themselves into a hole out of which they cannot climb.
Joyce Carol Oates, writing about her tachycardia, a potentially dangerous heart condition, explains that the important thing during an episode is “to prevent panic! You must not panic!”
This sums it up perfectly: I worry, knowing full well that I shouldn’t. I’ve been known to worry savagely, relentlessly, for hours at a time. If nothing else, I worry about worrying. No matter how hard I try to relax or what clever stratagems I devise, I am no match for the treachery of my own mind.
There is little doubt that my attitudes and habits, my way of being in the world, have much to do with my current condition. At the very least, one does not ingest large quantities of alcohol for twenty years without paying some sort of physical price. In retrospect, it seems remarkable to me that my body held out for as long as it did.
In fact, it was only after I’d been sober for a while that things suddenly began to go haywire. I woke up with headaches, became strangely irritable around mealtimes, was constantly hungry, craved sweets. In those days, breakfast for me was usually a bowl of Frosted Flakes in cream, with a six-pack of miniature powdered doughnuts on the side. I loved those little doughnuts, popping them into my mouth throughout the day like oversized Lifesavers, my fingers, desk, and, no doubt, the corners of my mouth perpetually coated with a fine layer of white powder. Lunch consisted of a submarine sandwich washed down with a couple of bottles of lime “fruit juice” — essentially nothing more than green sugar water. Supper was usually a repeat of lunch, except for the addition of French fries. Evenings, spent at AA meetings, were an orgy of coffee and sweets. Afterward, we’d go out for more coffee and ice cream or pie.
A co-worker, herself a recovering alcoholic who suffered from hypoglycemia, recognized my symptoms and urged me to change my eating habits. But I was arrogant, impatient, and unwilling to listen to good advice. Just as I had refused to believe I was an alcoholic, I could not accept that I was physically ill.
By the time I began to admit there was something wrong with the way I was eating, I was much worse. I grudgingly began to change my diet but ignored the warning not to eat the same foods all the time, because hypoglycemics often develop food allergies. This seemed ridiculous to me, as ridiculous as the notion of hypoglycemia had once seemed. Mostly for convenience, I continued eating large amounts of the same foods every day — and, sure enough, I gradually became allergic to many of them. It took me years to adopt a varied diet. By then, there was precious little left that I could eat.
The following is a partial list of the foods to which I am currently allergic: beef, chicken, turkey, eggs, tomatoes, nuts, corn, white flour, wheat flour, millet flour, barley flour, rye flour, buckwheat flour, legumes, any foods containing sugar, potatoes (they are quickly converted to sugar after ingestion), dried fruits, more than one or two pieces of regular fruit, anything with caffeine or MSG, cheese, yogurt, milk, and most anything in a box or can. I have also discovered, in my never-ending search for foods that I can tolerate, that I get sick from rabbit, duck, alligator, buffalo, snails, turtle, and snake.
My mother, who once referred to my avoidance of sugar as a “fetish,” has a hard time accepting all of this. Likewise my father, who can’t seem to resist telling me about the latest article purporting to debunk, yet again, the “myth” of hypoglycemia.
“So, Alan,” my mother ventures brightly during one of our infrequent get-togethers, “how’s your problem going these days?” This is not asked in the spirit of commiseration, or even genuine curiosity. It is more of a statement, an intentional recasting of my physical illness into psychological terms. I have a “problem,” it is understood, a “fetish,” as if I were dressing up in women’s clothing.
I’m not sure why my parents find it easier to think about my illness this way. From the standpoint of family dynamics, it would be much less complicated simply to accept my illness at face value. Perhaps they sense my own confusion. Or maybe they think I would have to be crazy not to want to eat dinner with them.
“All I know,” my mother says by way of dismissing the subject, “is that when you left home at eighteen you were perfectly healthy.”
In other words, whatever else might be said, it’s not her fault.
In regards to my illness, I am often angry and irrational. I know it’s not unjust that I’m sick; it just feels that way sometimes. I know I can’t expect the world to come to a halt just because I’ve got another headache; it just feels like it should sometimes. I know it’s not the doctors’ fault they don’t have a cure; it just feels like it is sometimes.
And yet I’m not looking for sympathy, nor do I want understanding. What I want is to be well. And if I can’t be well, then it’s important to me at least to act as if I’m well. This has nothing to do with courage. Rather it’s a kind of vanity, a mad and desperate pride.
I’m a poker player, and last year a friend asked me to go to Las Vegas with him. On impulse I agreed. For me, a five-hour plane trip followed by two weeks in a strange city presents a logistical challenge of major proportions. It’s all about food: finding food, buying food, preparing food, eating food. There are companies that specialize in procuring unusual meats from all over the world. When my special order of exotic meats failed to show up at my motel on time, it constituted a full-blown emergency.
Every evening at six, I’d go out to play poker carrying a fanny pack stuffed with provisions. Because many casinos don’t allow eating in the poker area, I’d head off for the men’s room every couple of hours, lock myself in a stall, and bolt down the likes of kangaroo meat and water-chestnut cakes, or wild boar and malanga-flour bagels, or venison and cassava crackers. At ten o’clock, my sinus headache would kick in. By midnight, it was generally so bad I’d be playing with one eye shut. But I’d hang in there till two, determined to get as much poker in as I could. I returned home exhausted and sick, convinced that the money I’d won couldn’t possibly have been worth it.
The trouble with getting sick, aside from the obvious, is that one is forced to confront certain unpleasant truths. For example, if I can get sick, I can get worse. If I can get worse, I can die. And if I can die (though not necessarily of this particular ailment), it no doubt follows that I will die. This is not rocket science. Your average eight-year-old knows these things. But there is more than one way of knowing something. The deeper way, the more personal way, often involves some pain.
Concerning the specifics of my illness, there seems little left to say. Shall I tell you that it’s harder on some days, less so on others? That it’s usually worse in the mornings, better at night? How about that when I eat chicken I get a sinus headache on the left side, but when I eat beef it’s on the right? Or that I get migraines when I eat plums, but not when I eat apples? Or that when I eat foods to which I am supposedly not allergic (which is almost always), I wake up with a headache anyway?
How riveting for me; how dull for you. More rocket science: we suffer alone.
But if my illness is not a disaster of titanic proportions, neither do I want to believe it’s a trifle. I once read that actress Annette Funicello’s first symptom of her impending multiple sclerosis — another illness that some theorize is related to stress — was a fall, accompanied by the auditory hallucination of a great, tolling church bell. This seems just about right.
I’m alone in the bedroom. The lights are off. The door is shut. Around my left eye is a ring of pain. If I concentrate, I can feel the pain radiating inward from all points along the ring toward the exact center of my eye. I listen to the sounds of the household: Pam, my partner, talking in low tones to her son Matt, who has come over for dinner. The television set, probably The Simpsons, Matt’s favorite. The clatter of pots and pans. Laughter.
I wonder how I got here, sitting alone in the dark, nursing another headache. I’ve never had any patience for sick people, even secretly harboring a certain contempt for their weakness. Do I have contempt for myself? Sometimes. Do I fight this tendency? Desperately.
Taking long, deep breaths, I try to meditate away my ring of pain. I’m the world’s worst meditator, unable to concentrate for more than about four seconds at a time. Almost immediately, my mind starts taking restless little side trips: to the nutritionist who says she can help me for two hundred a month; to the doctor who’s prescribed yet another vitamin regimen; to the friend who keeps telling me that if I just listen to my body, it will tell me what it needs.
I don’t think my body knows what it needs. What could it need with ten meals a day? In what way does it profit by rejecting most foods?
It occurs to me that perhaps, at its core, my illness is some sort of communication disorder. Maybe my body’s calling for less food while I’m hearing “more,” or maybe it’s demanding certain kinds of foods while I’m hearing others. Or maybe it’s not about food at all, but some other kind of hunger that my body — poor, dumb, and brutish in its way — has no language to express, and which I — poor, dumb, and brutish in my way — have no capacity to understand.
The image of my body as some suffering creature I’m not smart enough to help proves even more painful than my throbbing eyes. I distract myself by imagining how great it would be if I were able, by dint of some extraordinary mental effort, to just will myself back to health. As foolish as it may sound, in the early stages of my illness, I would try exactly that, eating a piece of pie or a dish of ice cream, then daring my body with all my mental might not to accept what I had just put into it.
Or how wonderful if, by some tremendous outpouring of will, I could finally overturn all those habits of thought so destructive to my health, just wrestle them into submission as if they were great sticks of furniture to be muscled out the door, making room at last for more optimism, more cheerfulness, more light.
With effort, I return to my meditating, clinging to the rise and fall of each breath as if to a small boat tossed by great waves; charting the ups and downs of my strange illness; tracing the rise and fall of hope.