Back in 2014, I began to have strange symptoms: my right foot would clench whenever I used the elliptical exerciser; my left hand became weak to the point that I could no longer play hand drums. Over time, my balance became poor and I was dragging my left leg when I walked a mile to my church and back each day for Morning Prayer.
I was only 50 years old, and had no visible tremors, and in a classic case of everything looking like a nail to a man with a hammer, a neurosurgeon diagnosed me with spinal stenosis. I underwent two massive, painful, and ultimately counterproductive spine surgeries.
When I ended up collapsing, unable to walk, I was diagnosed with cortico-basal degeneration (formerly Shy-Drager Syndrome) and given 3-5 years to live. Death from this dreadful disease is almost always horrible.
This disease looks a little like Parkinson’s, but is more vicious and, in particular, is not responsive to carbidopa-levidopa, which is used to treat Parkinson’s. But my doctors threw the medicinal combination of carbidopa/levodopa at my disease as a sort of Hail Mary. Because I started getting better, five months later they changed my diagnosis to Parkinson’s. If no one had taken that ‘let’s just see what happens’ chance, and I had never gotten c-dopa/l-dopa, I would be dead by now, just as though I had actually had corticobasal degeneration. For this medical roll of the dice, I am supremely grateful.
But Parkinson’s is exhausting too, and incurable. I am haunted by the images of old people with contracted bodies strapped into wheelchairs and parked in front of nursing home common room televisions I saw so many of during my time as a hospice chaplain. I replay the conversations in which adult children, exhausted from waiting for years for ‘the other shoe to drop,’ feeling guilty because they were worn out from waiting for their parents to die. I remember one woman groping me in a locked ‘memory care’ unit because she had frontal-lobe disinhibition and a man in a wheelchair weeping with desire for a pretty young nurse’s aide because one possible symptom of PD is ‘hypersexuality.’ All these visions haunt me, waking and sleeping.
Samuel Isaac Joseph Schereschewsky whom we commemorate today was born in 1831 in Lithuania. He later traveled to Germany to study for the rabbinate, but while there, he converted to Christianity and soon after emigrated to America to train for the priesthood. Already a gifted linguist fluent in multiple European languages, in 1859 the Episcopal Church sent him to China, where he devoted himself to translating the Bible into Mandarin Chinese. In 1877 he was elected Bishop of Shanghai, where he founded St. John’s University, and began another translation of the Bible, this time into a difficult dialect of Chinese called Wenli.
While working on this translation, Scherschewsky developed Parkinson’s disease and, because carbidopa/levodopa was not yet in use, became largely paralyzed. He resigned his position as Bishop of Shanghai, and spent the rest of his life completing his Wenli Bible. He typed the last 2000 pages with the one finger he could still move.
As I write this, my back hurts and my fingers (all ten of them) feel like sausages. I have fallen several times recently, mostly in the woods while walking my dog, but I keep doing it because we both need the exercise, which is probably the main thing keeping me out of a wheelchair.
I know it sounds like a cliché, but whenever I don’t feel like working because typing is now so difficult and painful—when I don’t want to take my dog to the woods because I’m ‘too tired’—whenever I feel like I just lack the spoons for any kind of social event, I remember Schereschewsky, typing his translation of the Bible into Wenli with one finger. That’s usually enough to light a fire under me.
Four years before his death in 1906, Schereschewsky said, ‘I have sat in this chair for over twenty years. It seemed very hard at first. But God knew best. He kept me for the work for which I am best fitted.’