Education Opinion

The Invisible Wheelchair

By Deborah M. Roffman — October 29, 1997 7 min read

It began innocently enough, early one September morning. We had seen it before, once or twice a year at most. No big deal. Even the second attack, coming on but three weeks later, provoked no real alarm. Only a slight register, perhaps, in that abiding region of a mother’s heart ever vigilant to the faintest of signals that one of her children might be in trouble. But then there was another, and another, and another, and by Thanksgiving the migraines were full speed ahead, coming one on top of the other, day after day after day.

We watched in horror as our son began to lose control of his life, and we ours. He had just entered his junior year in high school, near bursting with its promise of richness and discovery and that glorious sense of newly won independence that only a just-turned 16-year-old can feel. Instead, his days quickly became punctuated by loss and defined by subtractions. More and more he was not in school, not with his friends, not caught up in the usual whirlwind of activities that were his life and love and upon which he depended and thrived. He was, instead, at home, in bed, in agony.

It took several weeks to get past the denial. Surely this rude and insufferable monster, appearing so cruelly and abruptly in our child’s life without due cause or warning, would one day just as suddenly up and disappear. Besides, we had never even heard of such a thing. A migraine was just a really bad headache, right? It always goes away, right? It can’t last forever, right? Right?

People really were well-intentioned, we had to keep reminding ourselves. Toughest were the horror stories--about an uncle who started with migraines at Adam’s age and was still suffering at midlife, or the daughter of a friend who had lost more than a year of schooling, or the sister-in-law for whom nothing has ever worked. Somehow, I still don’t know why, hearing confirmation of our worst nightmares come true was supposed to make us feel better.

Then there was the endless advice, most of it legitimate (but, in truth, more overwhelming than helpful) and some of it silly and irritating. We forced ourselves, however, to listen patiently and politely to all of it; some small unexpected sliver, some minor idiosyncratic detail might eventually prove to be the “magic bullet.” Even vague acquaintances would hear of Adam’s affliction and lunge right in with a litany of unsolicited exhortations--"But have you tried this doctor or that treatment, or this remedy or that clinic, or this drug or that hospital?"--when a simple expression of comfort or empathy, or affirmation about the many things we were already trying, would have felt so much more supportive.

Migraine is an invisible and bewildering enigma, and this reality can cause as many problems as the illness itself. While in the midst of an attack, an afflicted individual is nearly totally incapacitated--unable to think, read, drive, eat, or engage in most other normal daily activities. This acute portion of the headache commonly lasts for hours at a time, and only strong medication and/or sleep can make the experience bearable. Even during the recovery stage, when most of the pain has receded, the person is often still incapable of functioning normally due to the lingering exhaustion and debilitation. However, when completely recovered, he or she is usually fully functioning (or at least appears so) and looks to be totally healthy.

Most painful for Adam, even more than the physical torment he endured, was finding that there were adults who doubted the veracity of his illness.

The reaction at Adam’s high school, as a result of this confused picture, was at best a plus-minus. It seemed that teachers and other staff members either “got it” (that a person can look well and be sick) or they didn’t. Those who understood did their best to help him keep up, and he did. Those who didn’t understand, or who were indifferent, chalked his absences up to whatever seemed “logical” (since his “illness” didn’t): laziness, fear of failure, school phobia, manipulation, overbearing parents, social problems, psychological disorder, and so on--none of which had been a problem in his 10 previous and consistently successful years of schooling. Among those who understood, mercifully, were both the guidance counselor and the principal; had they not been sympathetic, the year most certainly would have been lost.

Most painful for Adam, even more than the physical torment he endured, was finding that there were adults who doubted the veracity of his illness, and thereby the extent of his suffering. (He took plenty of grief from certain kids as well who thought he wasn’t really sick, but he was able to comfort himself by remembering their age and immaturity.) Other adults, he was beside himself to discover, seemed to value hard and fast rules more than kids. For example, some expressed open resentment of the fact that he was given permission to participate in afternoon classes and evening activities when he had not been in school a full day. While many were genuinely grateful to see him up and about and able to take good advantage of these brief windows of wellness and normalcy, others were adamant--even righteous--in proclaiming, “Unfair!” For Adam, it was these kinds of judgments and reactions (coming sometimes from adults he had previously admired and trusted) that afforded the harshest and most demoralizing lessons of all learned during this year from hell.

But there were also many bright lights. A saintly music teacher who supported Adam like a father every step of the way. An English teacher who kept reminding him how all of this would end up at the core of a great college essay some day. A dedicated Home and Hospital tutor. Classmates who called or stopped by each and every day they noticed he wasn’t in school. Clergy and family friends who prayed weekly for Adam’s recovery. Colleagues who sent food when things got really bad. A doctor who was always accessible, always supportive, and hellbent on trying everything until something worked.

There are surely reasons for the silence, not the least of which is the desire to have one’s life be about something—anything—but one’s chronic illness.

In Adam’s case, as with many other sufferers of chronic or intractable migraine, the search for relief involved a painstaking and frustrating process of trial and error, and a veritable encyclopedia of traditional and nontraditional interventions: drugs, injections, hospitalizations, dietary restrictions, allergy testing, sleep studies, biofeedback, stress management, meditation, acupuncture, herbal mixtures and supplements. Eventually for Adam there were fewer bad days, even an occasional good week, but there was always the inevitable relapse; the monster continued to run its heinous course through our lives well into spring.

Today Adam is well. He is one of the lucky ones. In early June, a deck builder happened to notice the smell of gas near the front of our home, and two days later, a leaking pipe was discovered just outside Adam’s bedroom window. Since it was sealed that day, Adam has been totally migraine-free. Weeks later, we have finally allowed ourselves to believe it is over. We no longer live in dread fear of Adam losing yet another day or week or month or year of his precious life to this terrible illness.

Many other migraine sufferers and their families do not have this luxury; they are not yet able to take their day-to-day lives for granted. For them the causes or neurological “triggers” of migraine remain elusive, or the available prevention and pain-management strategies prove insufficient. Tragically, there’s still so much we just don’t know about this disorder.

But there is plenty we do know about the people who, like Adam, suffer from this--and other--chronic, but invisible illnesses. Their affliction is very real, and so is their suffering, and so is their (and their family’s) ongoing need for compassion, understanding, and support. Our family has come to know many people these past months who suffer with migraine and other sources of chronic, debilitating pain, and we have taken great comfort in being there for one another. We have been shocked and dismayed to discover just how many people we personally know who have been suffering--most often in stoic silence--for years. There are surely many reasons for the silence, not the least of which is the desire to have one’s life be about something--anything--but one’s chronic illness. (One of the saving graces for Adam has been his network of e-mail contacts with camp friends who to this day don’t know how sick he’s been.) But, just as surely, it is too often a reluctant silence born of a painfully learned realization: that others don’t, can’t, or won’t even try to understand that not all wheelchairs are visible.

Yep, Adam. Sounds like a great college essay topic to me, too.

A version of this article appeared in the October 29, 1997 edition of Education Week as The Invisible Wheelchair