Whenever I’m hospitalized, I’m struck by how many hospital staff — doctors, nurses, bloodsuckers — are clueless about paralysis and potential complications. Amid all the poking, prodding and mistaken assumptions, I might as well be a side of beef. These are the times I see clearly what’s missing: I need an advocate to look out for me.
You know the drill. When we don those ridiculous gowns, we might as well have stripped off our identities, civil rights, preferences. It’s lockdown time, and we’d better be alert.
In 1975 I had a cellulitis infection. The doctor in charge looked at my shiny red leg and told me he might have to amputate. I was shocked. I’d had this before, and it had healed at home with pills, bed rest and warm saline compresses. This time it did the same. The only difference was the antibiotic was dripped in rather than swallowed and the hospital bed wasn’t as comfortable as my waterbed.
The night before I was to be discharged, I woke in darkness, switched on my bed lamp and freaked out. My sheets were awash in blood. The IV was working in reverse! One quick phone call and my wife-to-be — my emergency advocate — sprung me from the vampire chamber.
Ten years later a different doctor/surgeon threatened me with amputation. I told him no, the wound would heal. He gave me three days to prove it. On the third day a nurse took away my water carafe and told me I was going under the knife the next morning for a skin graft. I called a doctor/para who understood that healing happens slower with SCI. He came to the hospital and changed the surgeon’s mind. I went home to my waterbed, no surgery. The wound healed fine.
Once I picked up a pressure sore while in the hospital. More than once I got a UTI.
I have more stories, as we all do, but don’t get me wrong. I’m not bitter or angry. Doctors saved my life after my plane crash, nurses have taken good care of me, overall, in half a dozen hospitalizations. Amazing progress in medical care is one of the highlights of the past century. But when specialization becomes fragmentation, something is lost. There can be too many experts. We need one advocate who can direct our care as if we are whole people, not a collection of body parts.
These days I have a primary care physician. Mel and I are on a first-name basis. He knows my body inside and out, and he knows me — where I live, my personal history, my faults.
The night before I had open heart surgery I was experiencing a great deal of pain in the hospital. With medication, I finally went to sleep. When I woke, it was 4 a.m. A solitary figure, clothed in white, sat next to me in darkness.
“It’s me, Mel. How are you feeling? Still having angina?”
“I’m OK now. What are you doing here at this hour?”
“I came in to check on you, and to pray.”