Originally written in 2007
Steve was a retired high school business teacher who had recently moved to North Carolina in search of a warmer site for his retirement years. I met Steve when I was leading the Triangle Scleroderma Support Group. Scleroderma is an uncommon, life-threatening, autoimmune disease that generally strikes women. Steve was one of its rare male victims. He had been lured to our support group by my co-leader, Theresa. To be more precise, Theresa lured Steve’s wife who initially dragged Steve to our meetings all but kicking and screaming. Support group attendance does not seem to come naturally to most men, but with the presence of a veteran teacher, Steve soon became a vital force at our small gatherings. Shortly after he joined the group, it was hard to imagine it without him.
I have met many people with scleroderma and most of us share facial characteristics that set us apart. Our taut skin virtually eliminates our lips and leaves our mouths very small. The skin can become so tight that many victims seem expressionless, sort of like an actress who’s gone overboard with Botox injections. Many of us also have small dilated blood vessels that dot our faces. At the time I met Steve, I had met about 50 people with scleroderma, but I had never seen scleroderma ravage anyone’s appearance the way it had altered Steve’s. Steve had so many dilated blood vessels that he appeared to have deep red polka dots all over his face. One of his favorite stories involved a transfixed little boy. After tolerating the child’s blatant stare for several minutes, Steve raised his fingers to his face and pretended to pluck off one of his “dots” and throw it at the little boy who subsequently fled to his parents, screaming all the way. A strong sense of humor was his favorite defense against his illness and all its complications. At the repeated suggestion of another member of our support groups, he finally incorporated yogurt into his diet to battle his gastrointestinal problems. When another member suggested that he take up yoga, he wryly replied, “Only one new “y” word per year ladies.” He was always ready with a joke and an encouraging word.
Shortly after we met, Steve developed pulmonary hypertension. He received exceptionally good medical care that capitalized off of the increasing availability of drugs aimed at managing this condition. For two years, Steve battled his disease on every front. He followed his medical regimen religiously, enrolled in a pulmonary rehabilitation program that involved 3 hours at the gym every day, and maintained an infectiously optimistic outlook. Despite his dependence on oxygen, he lived a fairly full life and enjoyed his retirement years with his wife, Jane. Then Steve began to falter. His gastrointestinal problems worsened and led to frequent hospitalizations. His lungs were failing and he was developing heart failure. Within months, he began to require a wheelchair and rarely ventured from home. The end of Steve’s life was clearly drawing near.
I had talked to him before Christmas and he was in good spirits. We shared our usual gripes about physicians and he repeated his favorite joke that they were all just “practicing.” He was looking forward to enjoying the holiday with his children and their spouses. Three days after Christmas, Steve was hospitalized for gastrointestinal problems. I assumed that it was going to be like his previous admissions, which lasted only a couple days and ended in a discharge to his home. I asked my husband to stop by after he saw his own patients, but thought little else of it. When my husband arrived home that night, he pulled me into the living room, out of the earshot of our young children. “You have to go see Steve tonight,” he stated calmly, “he’s not going to make it until the morning.”
When I entered the patient unit, I passed the waiting room where Steve’s family was eating their dinner. Their eyes were red and their grief palpable, but they were coping. “It was so nice of your husband to come,” his daughter-in-law said, “He was like an angel. He just made sure that we understood what was happening and that we were all on the same page.” They were starting to accept and, given Steve’s suffering, embrace the inevitable. But their sadness over losing this wonderful man was raw.
Steve was mental presence was not readily apparent when I entered his room. Jane told me that earlier in the day he had groused, “I don’t know how to pass over.” Perhaps he was en route already. I held his hand and told him what a privilege it had been to know him and how grateful I was for his friendship. I stayed for a few moments with him until Jane returned. When he heard her voice, his eyes darted from side to side. “I think he knows you’re here,” I said. She went to him and I left them to each other. Looking over my shoulder as I left the room, I watched her coo at her dying husband like a smitten adolescent. I felt like a voyeur but I couldn’t tear my eyes away from this particular love scene.
Steve died at 3:00 am on December 31st. On the day of his funeral, the church was filled to capacity. Not a bad showing for someone who moved to the area only four years prior. He had touched so many lives. A physician who had cared for Steve in his final months wrote a letter that was read at the service. In it he stated that Steve’s willingness to participate in medical research was one of his greatest legacies. But as I looked around the crowded church, it occurred to me that Steve’s greatest legacy was that he never allowed the disease that ravaged his body and his appearance to change his heart and soul. His spirit escaped completely unscathed. That was what drew all of us to him. Even though he lost his physical battle with scleroderma, he won the emotional war. He made us all feel like that was possible.