On Saturday morning, 6 April 1996, I awoke with a “hitch” in my right hip. I thought to myself that I must have bursitis, another malady of my mother, as I tend to have the same issues that she had, except they occur in my life about 15 to 20 years earlier than when they occurred in her life. It was a short time before my 42nd birthday.
By the end of the next week, the right side of my body was totally useless, and I lugged it around with the rest of me like a sack of potatoes. My right arm and hand and foot did not work properly. My doctor sent me home on that Friday and told me not to go back to work for at least a week. Despite my condition, I did go to worship. I was the only musician for small congregation just off Fondren, north of West Bellfort. To play piano was to subject myself to excruciating pain in my back and arms; I played anyway.
One Sunday afternoon, I watched my feet swell, to the point that I felt they just might pop open. I was taken to a Bellaire hospital’s emergency room near my doctor’s office. The next day, I was transferred to Memorial Southwest. Lying in the bed, I explored my body, wondering what the heck was going on. I felt a lump on my left knee. That had not been there before. There was nothing on my right knee. This was troubling. After some tests, I was sent home but still had no answers.
It was clear that I could not return to work. That was a huge disappointment, as I had been preparing for big trial, the only case I worked on for Williams - Bailey, back then a midsize law firm that specialized in mass tort litigation, mostly along the lines of work-related mesothelioma and other issues. My case, the only one to which I was assigned, was the wrongful death of a man who was working on a maintenance crew at a chemical plant and was exposed to anhydrous ammonia. He lingered – suffered -- for three weeks, and died. My “file” was an eight-foot wall of my office, shelves floor to ceiling, catalogued and cross-referenced. I did not have the luxury of a relational database, but I knew where to find anything on that wall. But . . . I digress.
One day, the defiant Andrea reared her head and declared she was going for a walk. There was a park at the end of the block. I lugged myself there, but could not make it all the way. Sitting down on a curb my prayer was “Lord, I don’t know what’s wrong with me. I can do without my left foot and perhaps an eye, but I need my hands to play. If you just let me play, I think I can make it through just about anything.”
Over the next few weeks, I had a full body scan, MRI, CT scan, more blood tests, x-rays and whatever else I’m not sure. There was poking and prodding. The full body scan produced an image of my skeleton, including two black splotches in the area of my lungs. Following that, I went back to the hospital for a biopsy. I had thought that there was something about my office building that made me ill. It had been under renovation long before I arrive there in December 1995. I am told the renovation was it into its second year. Floating in the atrium of the building were whisps of white matter all the time. Upon entering the building, I would hold my breath, race to the elevator and try to get on it before taking another breath. I was not always successful, probably 50-50. I would get terrible headaches at work and jokingly say that I was allergic to the building. That was probably true.
Anyway, before I went for the lung biopsy, I requested a sample for myself. I figured if they’re plucking things out of my body, I wanted to have some. Upon completion of the biopsy, I asked for my sample, and in return received a look that screamed “what the heck are you talking about?!” I was disappointed, as I wanted to send the sample off to a lab and get results independent of any doctor.
On May 10, 1996, I was diagnosed with Sarcoidosis. Not having a clue what that was, it became my job to learn about it. That was a dismal experience. The information was scarce. It was deemed to be an “orphan” disease, more prevalent among Blacks than Whites in North America, more prevalent among Whites in Northern Europe. It is multi-systemic and multi-symptomatic, can look like other conditions. Among other things, I was tested for lupus, lyme disease and HIV. The most commonly affected organs are the lungs, but it can show up in any organ. Any. Organ. My eyes and lungs are affected, but the worst of my symptoms are manifested in my bones, joints and muscles. And I don’t fare well in extreme temperatures (anything below 65 or above 75 degreesS).
Even through the worst of my illness, I only missed one Sunday of worship, and that was a planned weekend away. I’ve always been grateful for that, as the one thing I’ve always wanted to do is play piano. And while I still have Sarcoid-related episodes, I am blessed to have found a way to have a reasonably normal lifestyle.
There is so much more to say, and with there being 24 more days of Sarcoidosis Awareness Month, I’ll continue this later.
