Woman and Superwoman

Last summer my husband and I went on a five-day hike in the wilderness of Colorado. We carried 50-pound packs on our backs, traversing steep mountain paths for six to eight hours each day. I certainly did my share of huffing and puffing, and my feet and legs were very sore at night. I had to take frequent rests and I definitely couldn’t keep up with my husband, but I didn’t berate myself for my less than Olympian performance. Just to be hiking at all was something of a miracle, as for the five preceding years I could barely walk a city block without collapsing in exhaustion. I was more than severely out of shape; I was suffering from Epstein-Barr virus, a debilitating chronic viral infection for which there is no known cure. While some people with chronic viral infections are able to obtain symptom relief, I struggled with the illness for four years before finding an experimental treatment that helped restore some of my energy. Had it not been for frequent intravenous infusions of megadoses of Vitamin C and B-complex Vitamins, this hike would have been impossible for me even to consider.

But this is not a story of triumph, despite how I have chosen to open it. It is interesting to me that even I find myself falling into the assumptions of the well, now that I no longer live with daily pain and unbearable exhaustion. I present this hike as an accomplishment, while in truth it had nothing whatsoever to do with my willpower, courage, or strength of character. I was simply—albeit extraordinarily—lucky, and that's all there is to it. Nothing I could do, nothing I could think, plan, or desire could have changed my life at all. The fact was that since I had become severely ill at the end of my second year of graduate school, my illness, and not my will, had controlled my life.

Imagine how terrifying that reality would be for an intelligent, independent, ambitious, woman—especially so for a Bryn Mawrtyr, a woman who only half-jokingly calls herself a “Mawrtyr” and who relishes the title “cussed individualist.” It took me years to accept the fact that I was not going to get well and be able to resume my previous life. The idea of never again being able to pursue my dreams and goals was unthinkable, a seemingly unendurable blow to one who espoused Nietzsche’s philosophy of “What does not defeat me makes me strong.” Over time, out of necessity, I did come to terms with the permanence of my illness, and with adaptation came growth. But day-to-day life was nonetheless extremely difficult.

The best way I can describe my experience is by saying that it felt like having a bad case of the flu all the time—the terribly sore back, the swollen glands, the joint aches, the malaise, the “cobwebby” brain, that peculiar sensory feeling when any clothes other than sweatpants or pajamas actually hurt your skin, and most of all, the omnipresent, debilitating, overwhelming fatigue. The experience of sleeping for 14 hours and still waking up feeling exhausted. But I was plagued by an odd assortment of other symptoms as well: swollen feet, new allergies, rashes, dizziness, a hacking cough, constant sinus and yeast infections, and a newly developed sensitivity to chemicals. I was a medical mess. My rheumatoid factor was higher than an arthritic’s, and my sedimentation rate was so elevated that my doctor was convinced I had cancer. Eight months into my illness I had to have extensive surgery on my sinuses to remove polyps and cysts, the size and shape of which mystified my surgeon.

A good day for me was often measured by whether I had enough energy to take a shower. At times I was forced to crawl across the floor because my legs were too weak to support me. The joints of my hand hurt so badly that sometimes I could not hold a pen. And, as difficult as it is to admit, there were cognitive deficits as well. My brain felt sluggish, my processing time increased, and even the most basic of cognitive tasks, like filling out a form or paying bills, took far longer to complete than before.

I had to make changes in my life that I would previously have found unacceptable. I had to put the Ph.D. I was pursuing on hold. I struggled desperately to maintain a part-time job, and at times I was just not physically strong enough to perform it well. Despite the explanations I offered my co-workers, my inability to stay for after-hours meetings or attend weekend seminars was viewed as a lack of commitment. My situation was obscured by the invisibility of chronic illness; since I looked relatively well, my lack of frantic productivity was attributed to a deficit in motivation, or worse yet, a deficit in ability.

I couldn’t exercise at all and rapidly gained almost 40 pounds from the lack of activity and the slowing of my metabolism, another devastation for a person who had worked out every day and had always been thin, healthy, and active. The most difficult part, though, was the overwhelming feeling of failure, the feeling of never again measuring up to the goals and accomplishments of “my late, great self.” I would stare at my resume and feel that it was someone else—another physical entity, even—who had accomplished all that was listed on it. I felt as though I had suddenly become very, very old, that my youth had been taken from me. And I had to come to terms with the devastating possibility that I might never have enough energy to take care of the children I hoped to have in the future. I discovered that finding hope in the face of a painful, debilitating illness is incomparably harder than the most rigorous academic or intellectual challenge.

It has been said that with most illnesses, you either get better or you die from them. Yet with a chronic illness, you do neither, but instead live in some hazy netherworld, fully in the realm of neither the sick nor the well. In her book The Alchemy of Illness, Kat Duff speaks of the juxtaposition of these two realms. While in the realm of the sick, things that we normally enjoy cease to hold our interest. We’re too tired and too uncomfortable even to be able to enjoy reading, that most steadfast of companions. Friends that we normally enjoy chatting with now seem burdensome, exhausting. Usually we visit the realm of the sick only to return to the realm of the well after a short while. What is it like to stay in the realm of the sick? The most difficult part is that you can’t call in sick for the rest of your life. You have to come to terms with the fact that sick is the rest of your life.

A further complicating aspect of diseases with diffuse and fluctuating symptoms such as Epstein-Barr virus, Chronic Fatigue and Immune Dysfunction Syndrome, Multiple Chemical Sensitivities, or Fibromyalgia is that many people—doctors included—do not believe they exist as discrete physical phenomena. These syndromes, which seem to affect women in disproportionate numbers, can look clinically similar to major depression unless careful diagnostic work is done. Alarmingly, more than one doctor wanted to put me on Prozac before even performing any bloodwork. As a doctoral student in clinical psychology, I clearly understood the symptoms of depression and knew that it was not my primary affliction. It was a case of the chicken and the egg: Although my mood was certainly affected by my illness, it was not the cause of my physical symptoms. I was sick for almost three years before I found a doctor who would listen to me and who would validate the reality of my illness.

Even now, while I am mostly recovered, I still cannot function at my pre-illness capacity. This is not entirely a bad thing—I have learned temperance and moderation, qualities I did not have in my repertoire before. Through my illness, I was able to find another side of myself, a less driven, more forgiving, more human self in touch with human frailties and vulnerabilities. I know that my illness made me a more empathic friend and partner, and a more empathic therapist as well. Whereas I previously approached everything as if it were a sprint, I am now learning the exquisite art of pacing myself.

Yet I repeat that this is not a story of triumph or of overcoming adversity. It is mostly a story of adaptation. I will always live with my illness, and the looming possibility of relapses and flare-ups. Very little about my health is certain. What is certain is that if I approach my life the way I used to—at full-throttle—I will get sick again. But even if I were fully recovered, it would be misleading to view my recovery as a victory. The more I struggled to “fight” the illness, the sicker I became. It was only when I accepted my illness as permanent, when I began to plan my life as a person with severe limitations—when in essence I merged with my illness—that I began to live again. Not get better, mind you, but get on with my life.

From my current vantage point, I view my illness ambivalently. It took away so much that I worked so hard for, I simply can’t say that I am not bitter. Of course I am bitter—it stole my life from me. But it also gave me a different one in return, one with more dimension, and one in which the lessons I learned were not only valuable but necessary. Perhaps, in this complex enterprise we call life, that which does defeat us makes us strong as well. Lenora Manzella Goldman is a student in the Doctoral Program in Clinical Psychology at NYU. She is currently researching the psychosocial effects of illness.

How do I cope with a chronic disability? I’ve struggled with this question since 1987, when I became ill with Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). Since there is no cure for this illness, an answer to the coping question becomes even more important. My short answer is balance. A friend with diabetes told me in 1987 to balance my life between rest and activity, but I didn’t start to understand what that meant until 1990.

Of course, I rested between 1987 and 1990; I was forced to. The exhaustion of CFIDS is to ordinary fatigue as the French bullet train is to the Paoli Local. Once a member of the swim team, I had trouble some days finding the energy to take a shower—never mind going to the store—because of the exhaustion and muscle and joint pain that I suffered. Swollen glands, a sore throat, new allergies, and a spaciness not unlike the one associated with a fever kept me in bed for more than 21 hours a day. When I slept, I woke frequently and in the morning I was exhausted.

A Philadelphia doctor had told me earlier that I had a viral illness, that it wasn’t fatal, but that I would feel worse before I got better. Later, I found out that the virus he located couldn’t cause the level of fatigue I was feeling. In the meantime, I left Bryn Mawr College in November 1987. I felt like my body was a car in the breakdown lane and I couldn’t wait to repair it.

Coupled with my impatience was frustration over the cognitive symptoms of CFIDS. I could handle being in bed if I could work from there. Once a B student in Calculus 101, I couldn’t subtract 8.5 from 17 because by the time I had 9, I had forgotten what to do with the 5. My attention span for reading or even talking on the phone shortened to 10 minutes. I welcomed television’s frequent commercial breaks in the Calgary Winter Olympics because my mind could rest during them.

I saw Bernie Siegel, a New Age healer, on television and decided to meditate my way to good health. My wandering mind, however, did not cooperate; it would fill with ideas for future projects. My mood swings surprised me, my family, and my friends, but I had tried antidepressants, and they had made me more irritable and worsened the insomnia. I wasn’t willing to go through that hell again.

Susan, the friend with diabetes who had told me I needed to rest, asked me in 1989 what upset me the most about being ill.

“I want to work!” I responded.

“But you are working; your rehabilitation is your work,” she answered.

At first I thought she was nuts, but then I thought more about what she had said. For me, resting meant giving in; it was proof that I was sick, weak, and no longer a doer and a thinker. Over the next few years, I made a conscious effort to equate resting with healing. In addition, I had to lighten the load of stress on my body. It became a laboratory: My mission was to discover what activities, emotions, foods, beliefs, and environments weighed me down.

If the short answer to how I cope is “rest,” the long answer involves re-thinking my perceptions of who I am, of what’s important in life, and of what power is. I can’t claim to know what the meaning of life is, but I am convinced that how one does what one does is more important than how much one does. Paradoxically, when I realized that my education was not all-important, it became easier for me to go back to school. In other words, without these changes in my beliefs, I doubt I would have ever gone back to Bryn Mawr and graduated.

Needless to say, this process of eliminating stress was easier said than done. I found it difficult to reduce my activities when I already had so few. What could I do during the several hours a day when I couldn’t sleep, but didn’t have enough energy to read a book? Letting go, watching birds make their nests, doing jigsaw puzzles, knitting, but most of all, not fretting: These were my medicines. Unfortunately, some people viewed these activities as slacking off, since they couldn’t see the exhaustion that drained me. For a while, I tried to teach people about this invisibility, and some people got it. Then I realized that the most important person had already been convinced—me.

Of all the perceptual changes I made, one of the most important was to become an observer of human behavior. I tried to understand people’s motives and actions. For example, I learned that some people reacted to me with fear, impatience, and anger because I threatened their sense of control and security. Once I understood this link, I became less aggravated with their reactions.

Another change involved the connection of mind and body. At the beginning of my illness, I tried to “cure” myself with imagery and meditation, but I had poor results. At first, I felt unsuccessful and frustrated. I was intelligent, I usually succeeded in what I did, so if I couldn’t solve this problem, then something was wrong with me. Eventually I realized how silly this was. A patient should not feel guilty about her inability to cure herself any more than she should believe that the disease is a demon from Hell.

The last conceptual change that I’ll bring up is hardly original: Life is short, so do what is important first. My decision to return to BMC reflected this belief. Physically, I could have waited a couple of more years. But emotionally, I was anxious to tackle this challenge. Besides, the classes of ’88 and ’96 have the same color lanterns.

Fatigue is still a major factor in my life. Just before commencement for the class of ’98, I walked from the lower science parking lot to Taylor Hall. It took me almost half an hour, but I walked. I didn’t need my handicapped parking permit as I had in ’96. Now I still avoid aerobic exercise, as it provokes a relapse, but the steps of the local metro station no longer leave me breathless.

At a Parisian job meeting, somebody asked me what kind of position I was seeking.

“A part-time job in a socially conscious company which needs bilingual people and is located within 30 minutes of my apartment,” I responded. The other person said that I was dreaming. She was right.

In 1933, on a March day at the height of the Depression, a nurse brought my parents’ second child to them for their first view. They already knew that she wasn’t the hoped-for he, and now they noticed that their daughter had eyes that raced from side to side constantly (Perez Galdos created a beggar in his famous novel Misericordia whom he described as having “dancing eyes.” I prefer his words, but no one has ever used them for me.) Later my parents learned that I was born with a congenital nystagmus.

It was obvious to everybody that there was a problem with the rapid movement of my eyes, but that I had as well a number of neurological problems was not to be diagnosed for many years. Those problems were attributed by doctors and my parents to my being “high strung,” “female,” and “too bright.”

I was born into an era when neither physical oddities nor quick intelligence were desirable in a girl. My parents had a superabundance of love and showered it on me, my older sister, and several years later the long-awaited two brothers, but their way of coping with my differences was basically to ignore them.

There were really two outward signs of my physical limitations—the fast moving eyes and an extremely poor sense of balance. My intelligence manifested itself in my being able to read before I entered school, much to my parents’ dismay, since prevailing child development theory in our community was that there was a “very thin line between genius and insanity.” I learned very young that it was definitely not good to be different. I couldn’t do much about the fast-moving eyes, except to be very careful not to look directly at others, especially children, so they wouldn’t turn to their mothers and say “Look at that funny girl with the crazy eyes.” My sister, a born teaser, found delight in her odd little sister and when she brought new friends to the house would ask me to “turn around quick, Patsy, and show them how you fall.” I was always obliging and very grateful we had soft carpets.

I learned very early that any mention of the far-too-frequent headaches was most apt to elicit an “it’s all in your head” (meaning tension or imagination) from doctors and my mother. I also always thought my lack of balance was due to my congenital nystagmus. When I was 59 and had to see an ear doctor to have some impacted wax removed, I did not know that this doctor was a specialist in otoneurology, particularly balance problems. He offered to do a new computerized balance test for me and I truly thought I performed very well. The test involved maintaining my balance (protected in a parachute like safety sling) while different conditions were created in a small unit I was standing in. The trick was to keep from hitting the side walls, which I thought I generally did. However, on my return visit for the results, the doctor proceeded to tell me that I had flunked the brain test and was apparently born without the part of the brain that puts all your balance sensory messages together and tells you how to stay upright.

I had to live for over half a century before science caught up to explain to the little girl with the dancing eyes, tipsy body and severe headaches what wasn’t in her head. And since the government had recently passed the Disabilities Act, I decided it was time to come out of the closet and proclaim myself unabashedly disabled.

So much for the congenital problems. There is no point in going into detail about the other parts of my body that have gone awry—multiple allergies, a crummy digestive and plumbing system, extensive arthritis, other neurological problems, etc. Suffice it to say I am a master at adaptation. As a result of the many falls, concussions and a skull fracture, I have a hard head, a totally deaf ear, no sense of smell with the concomitant lack of 98% of my taste, and a variety of stitches on my skin. I arrange my college classrooms and office to avoid having anyone to my immediate left. I force my students to speak loudly in Spanish (no mean feat as any language teacher knows). I eat according to sight, texture and memory.

A cervical laminectomy about 20 years ago left me with chronic neck, arm and hand nerve pain. I control it mainly with a TENS unit, a battery powered device that delivers rapid brief electric shocks to pads which I place over various trigger points along the nerve path. I have to explain the blinking red light on the small black box I wear on my skirt band to my students.

For the past four years the college community has come to know me as the mad driver in the three wheeled Safari cart who dashes through the tunnels, corridors, and in and out of elevators. My cane serves for everything—opening and closing windows and doors, retrieving dropped papers, pens or bottle tops, pushing elevator buttons. The new President of our College told me last year that I reminded her of the Energizer Bunny, I just keep going. A faculty colleague found a stuffed Energizer Bunny for my desk.

A love of others, a good sense of humor, strong determination to keep going, the knowledge that “the best way to handle chronic pain is to distract yourself from it,” gets me out of bed each day and on my way.

In many ways I am grateful for the challenges that life has brought my way. I believe it has made me more sensitive to others’ hidden or obvious pains, differences, sufferings. I can seldom be more than one who listens, understands and supports them, but I trust my being there is of help. Certainly others “being there” has been a help to me. My adult world has encompassed many college students, faculty and administrative colleagues, hundreds of children, youth and adults in the inner city of Milwaukee through the various alternative schools and programs I have founded, co-founded, or supported, and most especially my Religious Community, the School Sisters of Notre Dame, and my ever-supportive and understanding personal family. Each one has enriched and helped to energize me, somewhat like the tangible spirit of God’s love being there to keep the old Bunny going along its always-a-little-tilted, twisted path.