My Fight With Scleroderma
AS TOLD BY MARC HOLLAND
FIVE years ago our family was extremely busy in the Christian ministry. Life seemed so promising.
Then, in April 1996, both my wife, Lisa, and I got the flu. While Lisa started slowly to recover, I did not. My flu progressed to pneumonia, which lasted ten weeks. What followed was the beginning of pain and the swelling of my hands and feet. When I walked, I felt as if I were walking on rocks. A few months earlier—at just 45 years of age and 165 pounds [75 kg]—I had been the picture of health. The results of all the tests taken at my annual physical had been normal. Now my doctors were deeply puzzled by my symptoms. The pain kept increasing in my joints and muscles, and by July my skin began to tighten. I was always seeking warmth and could hardly stand air-conditioning.
Immediately we began doing research to find an explanation for this bizarre sickness. In July 1996 our family doctor sent me to a specialist in rheumatology. It was especially cold in his office, and by the time the doctor came in, I looked as though I had blue gloves and socks on my bare hands and feet. After the examination the doctor gave his grim diagnosis. I had diffuse scleroderma (SD).—See the box “Scleroderma—When the Body Turns Against Itself.”
The doctor explained that there is no cure for the disease and that it is life threatening. SD is very painful, much like its sisters lupus and rheumatoid arthritis. And because some of the symptoms are invisible—such as pain and acute fatigue—other people may not understand the limitations imposed on the sufferer.
Our family had always worked as a team in Jehovah’s service. For example, we had moved to where the need was greater for Bible teachers. We had also had the privilege of working as volunteers on many Kingdom Hall construction projects in the United States and abroad. We had even shared in foreign disaster relief work. In fact, just before that flu, we had been ready to move to Mexico to assist English-speaking groups of Jehovah’s Witnesses and to help with construction work there. Now it appeared that our life of active service would change radically.
Important decisions and responsibilities began to fall on Lisa’s shoulders. Sometimes she was so overwhelmed with everything happening so fast that she could only think to say to Jehovah, “Please help us to make wise decisions today.”
It is not known what causes SD, and the disease itself is not treatable. Instead, relief is sought for its symptoms. Tests conducted on me showed that I had a lung capacity of 60 percent and later only 40 percent. My lungs were hardening, and the only treatment offered was chemotherapy to slow or shut down my immune system. This would make me sicker, and although it might help me for a short time, no guarantees of a more lasting impact were given. We decided that I was sick enough already and declined to accept this treatment. For the first of four times, my family made funeral arrangements for me.
Progressive Effects of SD
Some doctors have described my case as the worst they have seen. It was so aggressive that by the end of September 1996, my skin had tightened from the top of my head through my trunk to mid-thigh and from my feet to behind my knees. When I raised my chin up, I could feel the skin on my thighs move. I was losing weight, and the pain was becoming intolerable. At this point the doctors felt that I might live one year.
Time seemed to be moving in slow motion. In the six months since the flu, I had become totally disabled, being in bed 24 hours a day. I had now lost nearly one third of my weight. I couldn’t dress myself. I was frustrated by not being able to feed myself properly, spilling much on my clothes and bed. My hands were starting to curl half closed as if I were holding a small ball, and I was unable to bend my wrists. Swallowing was becoming a problem, as my esophagus was losing flexibility. I needed help getting in and out of the bath as well as on and off the toilet. The pain was excruciating and unrelenting. I slept more and more, sometimes 18 to 20 hours a day.
By doing personal research on SD, Lisa found a study on the use of antibiotics in treating the disease.* We contacted many patients who had tried this treatment, and their remarks were positive. We copied all the information and took it to my doctor, asking him to read it. The doctor felt that I had nothing to lose, so he prescribed those antibiotics. They seemed to stabilize my condition for a while.
Spiritual Activities Not Forsaken
I continued to make the effort to go to Christian meetings. To assist in this regard, we bought a van, as I was unable to bend my stiff body in order to get into a car. I often carried a bowl with me, as the car ride made me nauseated. I also brought blankets and heating pads to keep me warm. To give my talks, I usually had to be pulled up the steps of the platform and lowered into a chair, as my joints were locked.
I was no longer able to engage in the door-to-door preaching work—an activity that I loved very much and that had been a large part of my life. However, I was able to preach informally to my nurses and doctors. I could also make phone calls to former Bible students. Seeing our active theocratic life come almost to a standstill was discouraging, even depressing. During that period we were unable to take our son, Ryan, in the door-to-door ministry because my wife had to be with me 24 hours a day. But some pioneers, full-time evangelizers, in our congregation offered to help in that regard.
As my illness began to stabilize, however, we began giving more thought to our Christian ministry. We sold our house and moved closer to our daughter Traci and her husband, Seth, so that they could help with both practical and emotional support.
Active Though Disabled
Since I was confined either to bed or to a wheelchair, I could no longer work secularly. However, the brothers in our new congregation gave me some responsibilities to handle. Gratefully, I accepted the assignment of arranging for Sunday lectures at our Kingdom Hall. Gradually I was able to contribute more to the local congregation. Though my condition has improved somewhat and I am able to move with less restriction, it is still difficult for me to stand. So I give my talks sitting down.
Because of our experience in construction, we were asked to work with Kingdom Hall projects. Lisa and I thus assist in purchasing items needed for them. I do this work from my bed. Such opportunities for added activity keep Lisa and me happily occupied for a few hours every day.
Our son, Ryan, has been a firm support, carrying part of the load of caregiving, even though he was just 13 when this ordeal began. But it has been a pleasure to watch him grow as a spiritual man. Soon after our move, he began serving as a pioneer.
We have learned much firsthand about encouraging those with severe or chronic illness. SD’s symptoms of pain and fatigue are invisible, but they still exact a terrible physical and emotional toll. At times, I have felt depressed. The debilitating symptoms of ulcerations and body deformation as well as the crippling of my hands have also been quite distressing.
However, the many cards and phone calls from friends have helped me to carry on. We have especially appreciated the loving friends who assured us that we were in their prayers. In turn, we ourselves have looked for and visited others with the same disease so that we could encourage one another. In the process, we have made some precious new friends.
Our life is not easy. In fact, we still have some very bad days, and we don’t know what the future will bring. Though we are unable to do the things we had planned, there is no doubt that we can still be happy. Our happiness comes primarily from enjoying a good relationship with Jehovah. We have also found that by keeping busy in Christian activities despite our circumstances, we can retain a measure of joy. We are a living testimony to the fact that Jehovah opens up doors of opportunity and gives abundantly “the power beyond what is normal.” (2 Corinthians 4:7) We find strength in keeping close to our hearts God’s promise of a time soon when “no resident will say: ‘I am sick.’”—Isaiah 33:24.
These included minocycline (Minocin) and tetracycline. Awake! does not endorse any health treatment. Decisions regarding health issues and medication are entirely personal.
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Scleroderma—When the Body Turns Against Itself
The term “scleroderma” (SD) comes from a Greek word meaning “hard skin,” though all connective tissue—not just skin—is affected. It is a chronic autoimmune disease primarily afflicting females and is characterized by abnormal thickening of the skin. It is often misdiagnosed, sometimes for years, since it presents different symptoms in varying degrees in each patient.
The cause of SD is unknown. Scientists agree that in cases of SD, the body produces an excess of collagen, which then attacks the body’s healthy tissue. Thus, it is often said that SD is a disease in which the body turns against itself.
There are two major variants of SD as well as other less common forms. The most serious form is called diffuse or systemic and is characterized by rapid development of a thickening of the skin, beginning with the hands and face and extending to the arms and trunk. People with diffuse SD are at greater risk for developing internal-organ involvement early in the course of the disease. The other major form is often called limited or localized SD.
In cases of diffuse SD, the areas of skin hardness are widespread and typically appear on both sides of the body. Diffuse SD also includes inflammation of the muscles and swelling of the fingers, hands, and feet. Gastrointestinal problems are common, but more serious is lung, heart, and kidney involvement.
The vascular system is also affected, many times beginning with Raynaud’s phenomenon, where the fingers and toes lose circulation and turn white, red, or blue upon exposure to cold and cause spasms of pain.
At present there are no proven treatments or cures for any forms of SD.
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Understanding Scleroderma Sufferers
To provide meaningful support to victims of scleroderma (SD), better understanding of them is needed. Because the disease is frequently misdiagnosed, a victim of SD may go for years without knowing the true nature of his or her illness. In the early stages, he may be subjected to a demanding diagnostic process. If a diagnosis is not forthcoming, he may feel powerless, isolated, and frightened, knowing that changes are occurring in his body that cannot be explained.
Sufferers often face losses, limitations, and changes on a number of levels. If physical limitations make it necessary for him to depend on others for care and treatment, his independence may be threatened. On a personal level, changes in relationships with loved ones may occur as family roles and responsibilities are transformed. The sufferer may also be unable to spend time with friends or engage in leisure activities. Professionally, it may be necessary for him to change careers or to stop working altogether.
Given these changes, it is not uncommon for the afflicted person to experience feelings of low self-worth. It is important for the sufferer to be aware that such feelings are a natural reaction to the illness.
On the positive side, many SD victims have found that love, joy, and hope have deepened in their lives as family members and others reach out to assist them. Although the victim and his loved ones are faced with difficult challenges, they can choose to maintain hope and a positive attitude. Feelings of hopelessness and frustration are valid, but the sufferer need not surrender to them.
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Our daughter Trisha and her husband, Matthew, serve at Bethel
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I’m able to help on construction projects even from my bed
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Our daughter Traci and her husband, our son Ryan, and my wife, Lisa