|Blindsided - Page 4|
As time went on, the overwhelming sense of loss yielded to specific daily confrontations with things I couldn't do at all (stand up and greet my wife with a hug, get out of bed, get dressed, get into my wheelchair), or that were severely compromised (have sex). It wasn't only the losses that confronted me, but also the inescapable fear of my own vulnerability. I can't be left safely alone at home in bed. I'm susceptible to illnesses I never thought of as a walking person, most of which have the potential to kill me. The fear for me is chillingly symbolized in my repeated experiences of taking an elevator and reading the sign that says "In case of fire, use the stairs." In other words, there's no plan for me: I can die in the elevator or wait for rescue and risk burning to death.
By the end of the fall of 1996, I had another permanent setback: my shoulders developed avascular necrosis, a deadening and softening of the bone that forms the ball of the shoulder joint, the result of the megadoses of intravenous steroids used to arrest the progress of the myelitis. My shoulders could no longer bear weight; hence, no more wheeling a manual wheelchair, no more transferring myself into and out of the wheelchair, no more rolling myself over or pushing myself to a sitting position in bed. Until a year later, when I got a motorized wheelchair, I had to be pushed by others for all but short distances. Now I was too crippled to use even the meager skills I'd learned in rehab.
For the balance of 1996, all of 1997, and nearly all of 1998, I had multiple complications that put me in the hospital as much as I was out: shoulder replacement surgery to reduce pain from the necrosis in my left shoulder; six weeks of inpatient rehab for the shoulder; discharge from extended care with an undetected urinary tract infection that led to septic shock and two weeks in the ICU, and so on and on and on. One of the severest tests came after living for a year with a disabling pressure ulcer on my bottom that restricted me to cycles of two hours out of bed followed by two hours in bed. At the end of a year of this futile treatment, it came down to six months of total bed rest.