One day I was practicing the oboe, building models in quarter-scale of Civil War railroads, going to the gym four times a week where I kicked ass with the soccer mom in cardio kickboxing, and going to Nancy’s photographic stuff. The next thing you know, I was laying in a hospital bed in the emergency room at Los Robles hospital in unbelievable pain and my fingers and toes tingling like crazy.
Unlike Joseph Heller, author of Catch 22, who experienced this same disease in the 1980’s, none of the five doctors assigned to my team could figure this out. First of all, they were thrown off by the fact that I had prostate cancer that could possibly have spread to bones. This was ruled out early with a full body bone scan. Joseph Heller, on the other hand, had a doctor who immediately know, from a description of his symptoms, that the disease was Guillian-Barré syndrome. It was only after I had a spinal tap that the awful truth was finally learned.
Now three weeks later, I lie in bed with the knowledge that I can move on to physical therapy in a near-by UCLA skilled nursing facility only if my pain can managed. In the evening, as I attempt to sleep, sharp pains can occur anywhere in my body and to this point, only an injection of morphine has been effective in quelling them down.
Today as I lay in bed, and Nance was working to setup a stable surface on which I could read Joseph Heller’s book on his experience with GBS, No Laughing Matter, the two of us discovered a mirror within the bed table. It was then that I first caught a good glimpse of my appearance. Just as in the photos, I look tired and aging.
I asked Nance to come closer to me, so that I could put my arm around her waist, something that was so easy before I was confounded to the 4×8 slab. She dropped into bed with me, and we lay there crying and caressing. Within a few moments, there was a knock on the door and it was the lead doctor on my case. He entered the room with a big smile. The doctor seemed pleased with my progress and the energy I was expending with my physical therapist to move forward, but still the complexities of bringing the pain under control have to be worked and will not be bringing on to the team a specialist in pain management.