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"Rewriting the Myths, Redefining the Realities"

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A Healing Journey

by Steven Brown

I remember. I was a teenager. All pain. My pain was all pain. All pain was my pain.

I remember. Lying in the field kiddy-corner from our house. Watching the dragonflies. Imagining interplanetary travel. Daydreams. Not too many night screams. Not yet.

Why did I start to limp? No one knew. I began favoring my right leg just before my sixth birthday. Hometown physicians in Kalamazoo, Michigan, could not locate a cause for the mysterious pain. My parents turned elsewhere.

Excited at the prospect of my first plane ride, I climbed up the stairs with my mother and grandmother. We traveled to Rochester, Minnesota’s famed Mayo Clinic.

Doctors, who seemed to know my grandmother, biopsied both thighs and then informed my mother that I had Gaucher’s Disease (GD). The year of the diagnosis was 1957. Little was known about GD. In the post-biopsy conference, my mother heard the bits of knowledge physicians then possessed. An inherited, progressive, non fatal condition, my parents and I could anticipate severe, chronic pain for the remainder of my life.

I remember. My gangling body. Draped over chairs, couches. Upside down. Potato chips and Dr. Pepper. Bags of potato chips. Six-packs of Dr. Pepper. Downed easily. One setting. No need to get up. Just continue reading, watching TV. Upside down. Watching the world with my head on the floor. My most comfortable position. Returning home, I behaved no differently than before. I played a game of football in the Michigan autumn. After being tackled I tried to get up. I could not. My leg was broken. Still unhealed from the recent biopsy, the femur - the long bone in my right thigh - snapped. A second adventure: spending my late October birthday and Halloween lying in the hospital waiting for the bone to heal.

I remember. Torturous nights. Excruciating days.

Once I slept for 36 hours. I woke every once in a while. But I lie in a hide-a-bed in the middle of the living room. Surrounded by people, TV, noise. Better to sleep; to escape. The pain of the house. The pain of the room. The pain of the body.

Each spring and fall, as the Michigan atmosphere changed, so would something in my body. My right knee would swell to the size of two mammoth fists resting side by side. The pain was agonizing, excruciating. I have spent much of my life trying to describe it.

Numbing. I remember the numbing, mind-succumbing, all-encompassing pain. Twisted bones. Joints out of place. Bone infarctions. That’s what they call it now.

When I was a kid we called them “attacks”. It fit. It felt right. My body attacked me. Left me wounded, needing time to recover.

While I was still a teenager, my left knee and then my hips joined in this chorus. The pain, as devastating as it was, never was the worst part of this condition. The inability of anyone to predict the course of the disease was its most frustrating aspect. I asked over and over again if anyone might know what I could expect in the future. No one knew. Still, advice flowed freely: “Find a job where you don’t stress your hips.” So much for my dreams of baseball stardom. “When you hurt, slow down, relax, give your body time to rest and recuperate.” Both my external and internal guidance ignored this counsel. I was much too ambitious to slow down. I had a life to live and an income to earn. How was I to become a man if I kept slowing down?

No weight-bearing was possible. Movement of any kind caused excruciating, undulating waves of pain. No movement was just as bad. Constant, pounding, searing, pervasive pain.

But I could not lie in my bed - alone - all day and all night. I did not know any esoteric, medical, or philosophical reasons why. I just knew I could not lie in my bed - alone - all day and all night. I had to move.

Ah, there was the rub.

Moving.

Slowly.

Excruciatingly.

Painstakingly.

Painfully.

I left home for college at the opposite end of the state of Illinois, where my parents had moved the summer before my senior year in high school. Two years later I fulfilled my own dream and moved west. I found myself in Tucson, finishing school, becoming engaged, then married, and moving to New Mexico for more school. In the mid-1970’s we moved to Norman, Oklahoma, where we began a family. My wife, daughter and I lived in a small house while I finished my doctoral studies in history.

I lived what passed for a “normal” life. Pain remained and intensified. It seemed like every one of my lower joints sang with pain. I constantly sought methods of relief. The codeine the doctors had prescribed when I was six was never very effective. The Demerol of my young adulthood was better. But not great.

Once I counted, literally, the minutes to move. Lying to sitting. Sitting to standing. Standing to moving. Over half an hour.

I am not attributing to memory something that did not happen.

I am writing this because so few do. But I am not the only one. There are others. My pain is not my pain alone. My pain is not all pain.

I lie. I decide to get up. To go to the bathroom. To go to bed. To get something to eat. To see another room. To do something. I decide to get up.

Now I get up. No, this is not an unconscious movement. This is very conscious, deliberate. It must be. It will happen no other way.

I decide to get up.

Okay, I have decided to get up.

I move. I scream. I hurt. Maybe I won’t get up. I am paralyzed with pain.

Okay, I have decided to get up.

I move.

I scream. I hurt. I will get up. I will get up. I will get up.

A young man, in my late twenties, I had lived with GD for 20 years, but I never got used to it. I continued to seek relief.
Orthopedists recommended that I eventually have hip replacements, but to wait as long as possible for my bones and technology to be more compatible. When I finally grew so fatigued with the everyday pain, I asked my current orthopedist how would I know when at last to have this surgery? His response was as depressing as informative, suggesting that when I felt so much pain at night that I could not sleep, even with painkillers, then it would be time.

I could still sleep with painkillers. But what about the misery of surviving each day?

I wondered aloud to my doctor about using a wheelchair. He advised me not to consider such a drastic alternative, stating that if I ever got into one I would never get out of it.

He didn’t see me; rather he saw my medical condition and gave what he believed to be his best medical advice. I had a much different perception of who I was.

I was a father who, because I couldn’t stand the pain of walking and standing, did not enjoy accompanying my young daughter to her preschool activities, or to the park, or to the mall. I was an active member of my community who served on many Boards of Directors and participated in a variety of local activities. I had to function with as little pain or exhaustion as possible.

Too many days and nights of pain and fatigue convinced me to ignore my doctor and listen to my heart. I borrowed a wheelchair and tentatively began to push myself toward freedom. Using a wheelchair quickly became a liberating experience. Malls no longer seemed like prisons designed to cause me as much agony as possible from one end to the other. The zoo beckoned. School functions were a breeze. Leaving home no longer meant continuous excruciating pain or debilitating fatigue.

I move.

My body begins to move with me. All of it. Except the knee.

Slowly, deliberately, tenderly, consciously, painstakingly, carefully, cautiously, I lift my knee. I move it alongside me. I place it with the rest of my body.

I drag it to a sitting position.

I exhale.

I rest.

I sweat.

I am exhausted.

Hurt.

I curse.

I breathe.

Hurt.

I curse.

I breathe.

I hurt.

I curse.

My spleen became enormous as the GD cells accumulated in that organ. My doctor suggested it be removed. She was concerned about my low platelet and white blood cell counts. I was anemic. I should be sick all the time. I was not, but I should be. I never got sick. I just broke bones. Still, let’s remove the spleen before it causes more damage. I agreed.

I lost fourteen pounds. That’s how much my spleen weighed. A picture of my no-longer internal organ found its way into a medical book describing GD.

I didn’t feel better. In fact, I felt worse. I had never had any pain above the waist before. Now I played a peaceful game of Frisbee, sitting down, and felt a muscle pull in my back. It refused to heal. An X-ray revealed I had broken a vertebrae. Healed now, I had to be more careful in the future. I could not. I fractured another vertebrae.

I decide to stand.

Okay, I have decided to stand.

I move. I scream. I hurt. Maybe I won’t stand. I am paralyzed with pain.

Okay, I have decided to stand.

I move.
I scream. I hurt. I will stand. I will stand. I will stand.

I move.

My body begins to move with me. All of it. Except the knee.

Slowly, deliberately, tenderly, consciously, painstakingly, carefully, cautiously, I lift my knee. I move it alongside me. I place it with the rest of my body.

I drag it to a standing position.

I exhale.

I rest.

I sweat.

I am exhausted.

I hurt.

I curse.

I breathe.

I hurt.

I curse.

I breathe.

Hurt.

I curse.

My back, so resilient following the first fissure, now screamed with pain. I lie tormented, eating painkillers for two months. Finally, I convinced my doctor to send me to Washington, D.C., where the National Institute of Health (NIH) was conducting research on GD. When I arrived, my legs were spastic and in the beginning stages of paralysis. The doctors took one look at me and asked my wife how I ever survived the plane ride. They kept me for a couple of days only to stabilize me and confirm my back was broken. Then, they put me on an air ambulance to Boston and Massachusetts General Hospital, where a team of physicians awaited me.

I lie two thousand miles away from Oklahoma. Surgeons installed Harrington rods, two steel poles on either side of my spinal column, and infused my weak and crumbling bones with cowbone.

I decide to move.

Okay, I have decided to move.

I move. I scream. I hurt. Maybe I won’t move. I am paralyzed with pain.

Okay, I have decided to move.

I move.

I scream. I hurt. I will move. I will move. I will move.

I move.

My body begins to move with me. All of it. Except the knee.

Slowly, deliberately, tenderly, consciously, painstakingly, carefully, cautiously, I lift my knee. I move it alongside me. I place it with the rest of my body.

I drag it alongside me as I move.

I exhale.

I rest.

I sweat.

I am exhausted.

I hurt.

I curse.

I breathe.

I hurt.

I curse.

I breathe.

I hurt.

I curse.

The pain that caused my hospital stay also ended my marriage. Neither my wife nor I could endure the constant pressure on our family. Nine years after our wedding ceremony we separated. We became joint custody parents and I continued with my job and my meetings - and my pain. Six years later, personal traumas and professional dead-ends combined to convince me to leave Oklahoma. After fourteen years, at the end of 1990, I moved to California.

I arrive.

I am exhausted.

I hurt.

I curse.

I breathe.

I hurt.

I curse.

I breathe.

I hurt.

I curse.

I await the next time I need to move.

I can wait for a long time, I think.

But, of course, I cannot.

A revolution in knowledge about GD occurred since I was first diagnosed. In the 1970’s, researchers identified GD as a metabolic disorder caused by a missing enzyme whose purpose is to break down lipids, or fatty cells. Without the enzyme, lipids accumulate in the body, causing organs like the spleen and liver to enlarge and bones to become weak. Known as Gaucher cells, in my body they invaded primarily my bones and joints and precipitated states similar to osteoporosis and arthritis.

Recent research has isolated over forty different strains of GD, but all remain combined into three primary classifications. I have the most common form of the disease, known as Type I, or the Adult Form, because we anticipate average life spans. Each of the other two groupings leads to early death, either in infancy or pre-teenage years.

When the Adult Form of GD affects someone from early childhood, pain is a common characteristic. I began writing about GD and pain when I was a teenager. In essays and poems, like the one integrated in this article, pain is dissected in its minutest forms. I began to write about pain for myself. To find an outlet. But I discovered when I tentatively approached the subject of pain in a speech, that I had struck a nerve. Others had pain, but few would talk about it. People felt ostracized from admitting or discussing or conveying how pervasive pain had become in their lives. Audiences encouraged me to continue to talk about my experiences so that others would have permission to share their feelings about pain.

About two years ago, after years of writing poems and essays and speeches about pain, I began to recognize a change in my relationship with pain. A process that I am only beginning to understand, I realize my thinking and my writing must have a new focus.

I still have pain. I am also healing.

Researchers in the 1980’s, having identified the missing GD enzyme, began attempts to produce a synthesized one. The new GD Foundation reported study results in its newsletter. I learned, soon after my move to California, that a new drug had indeed been synthesized to replace the enzyme in GD. My Oklahoma internist suggested I find out more about it. I did.

I had doubts.

I wondered whether side effects had been adequately investigated. I pondered the early data, which indicated that people with internal organ involvement experienced better results than those like myself, with damaged bones. Enzymes cannot be obtained orally. Availing myself of the synthesized drug was not as simple as swallowing a pill. Only intravenous infusions would work. Acquiring the enzyme meant spending several hours a couple of times a week in a doctor’s office or hospital. GD had invaded my life enough. Did the possibility of relief have to feel as intrusive as the disease itself?

I had a busy job that required lots of travel. I wanted to spend no more time around doctors or hospitals than absolutely necessary. I concluded that the treatment was not for me.

I stayed in California for three years and great change ensued. I no longer felt able to function in a nine to five job. I explored the history of people with disabilities. I became passionate about disability culture, a belief that disabled people, like other minority groups, formed traditions and beliefs from their common experiences. I met an incredible woman and, much to my surprise and delight, remarried. My relationship with my daughter intensified, became strained, then virtually non-existent. Apart from my new marriage, I existed, but I did not thrive.

We decided to leave the hustle and bustle and dampness of northern California for the slower paced life in the warm, dry climate of southern New Mexico. We sold our house, moved to a city where we knew no one and created a not-for-profit organization, the Institute on Disability Culture.

Our lives became more relaxed. The warm, dry air did feel wonderful. But I did not experience less pain. The opposite occurred and my pain escalated.

I slowly decided to investigate a new research protocol for the synthesized drug. A protocol that seemed tailor-made for me. The researchers sought someone my age who had no spleen and lots of bone involvement and had never used the synthesized enzyme. Still possessed with doubts about the entire synthesized enzyme process, I convinced myself that if I contributed to ongoing research as well as discovered any new information about myself and my condition, it would be okay.

The research protocol required visits to both the National Institute of Health, and Massachusetts General Hospital, retracing my journey of a decade before. While I relived my back surgery and subsequent years, doctors performed volumes of tests. After a week of constant blood draws and X-rays and urine samples, I learned that I did not meet the protocol criteria. My bone density, one of the standards of evaluation, could not be measured, even on their high-powered equipment. Stunned by this news, I wondered how I managed to get out of bed, to walk around the house, to get in and out of a car, or my wheelchair, with my fragile, paper-thin bones. The doctors just urged me to get Ceredase, the synthesized enzyme, as soon as possible.

I decided to check out the possibilities. We met with a representative from Genzyme, the drug’s manufacturer, and after grilling him for a day, I decided to give Ceredase a try. Shortly before my forty-fifth birthday, I began to receive infusions.

The ordeal of the first infusion might have confirmed all my earlier fears. In my doctor’s office, on a day she was to see patients, she was suddenly unavailable. I waited for hours. When we finally did connect, she seemed more nervous than I, handling what was then the most expensive drug on the market. Five times she stuck me before she finally got the IV into my veins. I had never been stuck more than once before. I felt the liquid rushing into me and I made more trips to the bathroom in that two or three hours than I would have thought possible.

Finally, it ended. But what would this choice bring?

My wife noticed an almost immediate surge in my energy level. I noticed I could no longer take naps, even when I wanted to. My body temperature changed. I no longer became cold as easily. I used to dread stepping out of the shower, no matter how warm the day, because I would be so cold. No longer. Now I sweated as I eased out of the shower, without regard for how frigid the outside air might be.

Weight gain is usually the first sign that the enzyme is working, but for six months my weight remained the same as it had for the past twenty years. Then a transformation began. I gained about ten pounds. Blood tests, too, showed signs of improvements.

While I enjoyed my new-found energy and other signs of increasing health, my pain did not merely continue, it accelerated. After forty years of GD cells insinuating themselves in my bones, the enzyme which is replacing them is also causing a change in my bone structure, stimulating pain. In an ironic twist of fate, as I showed outward signs of improving health, the pain persisted and invaded my life even more than before.

Depression ensued as I feared that healing and pain would be paired together forever. Then my life changed again.

In August 1997, we traveled to Germany to visit friends for three weeks. Otto and Eva are both unconventional physical therapists who practice Integrated Manual Therapy, a technique combining a variety of healing practices. The friendship we have with this couple has dramatically affected our health.

Midway through the second week of our visit, Otto and Eva introduced us to Knut and Ulrike. Believing their life mission is to find ways to decrease pain, they have sought techniques to fulfill this goal. Knut, an internist, explained to us that they thought they found an incredible, non-invasive therapy that reduced pain, called Pulsed Signal Therapy (PST).

An American physician and chemist, Richard Markoll, has concentrated on developing PST since 1980. Clinical studies at Yale University Medical School’s affiliated teaching hospitals involved more than 5,000 patients. The idea behind PST is that when someone is born, his/her cellular structure is designed in a certain way. As we live and grow, life traumas create pain in the cells around ligaments and tendons and change their cellular structure. PST machines contain an air-coil system that resembles a ring. Electromagnetic signals stimulate one’s body and rearrange cells to their original non-pain situations. PST is believed to decrease pain and increase functional capacity in conditions ranging from osteoarthritis and sports-type injuries, to any joint or musculoskeletal disorder. No side effects have been discovered.

In the U.S., PST awaits FDA approval. In Europe, Knut became the first physician to install PST. He described treating many patients with varying degrees of trauma and achieving a success rate of about eighty percent in pain reduction. As a physician who never again expected to see people with our conditions, and as a healer who wants to alleviate pain, Knut offered us treatments. We accepted.

He explained that people need at least nine one-hour treatments. Two sessions in one day are possible, but only if spaced at least five hours apart. After the treatments end, the process is believed to continue to work on the cells of your body for the next two to three months. The PST, if functioning well, will continue to have a positive impact for an extended period.

The day we began treatment we met an elderly woman who informed us that before she began the PST she needed a painkilling shot an hour before she could get out of bed in the morning. After a few sessions of PST she felt like dancing. We were eager to begin.

The idea is to start with the area of most pain. My wife Lil, who was born with an undiagnosed medical condition of displaced hips and hyper-extended joints, began with her hips, and I started with my lower back. Since we both wanted to treat areas of our bodies that required lying down, we were placed on a mattress that could be located in various positions under the ring.

Both of us felt our pain lessen during the treatments. I experienced more success. Pain persists and is still sometimes tormenting, but less so than before the treatment. The area of my lower back that was the target of the PST machine recovers from aches and pains much more quickly than before.

The treatment stimulated another kind of healing that is more difficult to describe. Ulrike walked into the treatment area one day to ask how we felt. I responded that I thought our lives had changed. Our focus had moved from the discussion of the intricacies of pain to the consideration of the nature of healing. Although I could not offer a concrete explanation of this feeling, I had a strong sense that future work would focus on health, rather than pain.

The processes of the PST treatment affected more than my physical health. Looking back, I believe I recognized a healing journey. I remembered the appearance of my disease toward the end of my fifth year. My most vivid recollection from that time of my life is being a carefree terror on a tricycle. I rode with abandon throughout our neighborhood, often crashing my three-wheeler. Scrapes and bruises were proud testaments to my prowess.

At the same time, I was extremely sensitive emotionally and devastated by the slightest insult. My parents worried more about my feelings than my spirited escapades. They repeatedly scolded me to cultivate less sensitivity to criticism. I was warned that if I could not harden my feelings, life would be fraught with hurt. I had the innate ability to be intuitive about people and events, but a small child, especially a boy in the 1950’s, was censured if he showed sensitivity; so I began to inhibit all my emotions.

My parents, in their desire to protect me from pain, unwittingly asked me to shut out a part of myself. Neither they nor I could understand the impact of this advice. When I developed this integral aspect of my personality, I created space for another part of myself to become manifest. Suppressed, but ever present, my genetic disease first appeared. Its advent compelled both myself and others around me to pay attention. No one could argue with the concrete evidence of swelled joints or broken bones. These pains were legitimate. They carried more weight than the invisible insights of a small boy.

Perhaps I had never before been ready to comprehend this exchange. Recalling this crossroads at the age of five is not laced with blame, but with a fiery desire to understand my life at this juncture.

The second bombshell occurred on a relaxed Sunday afternoon after we had returned to New Mexico. We were not home alone, two visitors from Germany had just arrived. Earlier in the day, one of these new German friends offered me a treatment of another non-invasive process, called Metamorphic technique, consisting of light touch on the feet, hands, and head. A few hours after this procedure, the thought that popped into my head, seemingly unbidden, was, “I’m ready to make a home again.” I wondered what that meant. Within seconds I knew. ear earlier my daughter turned eighteen. We renewed contact. We had recently seen one another for the first time in five years. It was a wonderful reunion and we were becoming close once more. When I thought, “I’m ready to make a home again,” I realized I gave myself permission to put aside past guilt and regret concerning my own role in our strained relationship.

Today, I realize I am prepared to be whole again - perhaps for the first time since the age of five. A dictionary definition of health is being whole - or being in complete integration with one’s self, physically, spiritually and emotionally. A lack of health would be signified by a failure of integration. For years in the disability rights movement I have worked toward societal integration, without much thought to my own interpersonal integrity. I believe now that I must focus on internal synthesis. This is the healing journey on which I embark. If I am successful, I will become whole regardless of disability, or pain, or external demands. I will be healed.

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