Whistling a jaunty ditty
Herald Staff Writer
In “Monty Python’s Life of Brian,” the film closes as Brian, played by Graham Chapman, is crucified. Next to him, an incongruously chipper Eric Idle starts signing and whistling “Always Look At the Bright Side of Life” while dangling from his own cross. I’d just assumed the jape was simply broad absurdist irony.
I’m rethinking that.
I was diagnosed a couple months ago with systemic sclerosis, an autoimmune disease where soft tissue is replaced with scar tissue. The disease is very rare, attacks women 5:1 over men and nonwhites 3:1 over whites. Yet here I sit, a white man with this disease. And like all autoimmune diseases, no one knows what causes it or how to cure it.
It started with swelling in the hands and feet and progressed rapidly. My hands are now permanently locked in a claw shape, I can’t bend my wrists and I’ve sprouted hideous, unbearably painful ulcers on my knuckles. Standing and walking are painful. I’m losing weight rapidly and get winded easily.
But I understand Eric Idle now in a way I never did before.
• I have the less deadly form of the disease.
• It’s left my heart alone, it’s barely in my lungs and, while I’m losing weight at an alarming rate, there was plenty of me to spare at the beginning; there’s hope treatment can forestall further damage.
• Walking and standing are not painless, they leave me breathless, but I can walk and stand nonetheless. This is more than many patients of this disease can say.
• Many patients go decades before a diagnosis is found. Thanks to the local VA system, I went from weird symptoms to diagnosis and the start of aggressive treatment within six months flat. As a degenerative condition, that matters a lot. And again, thanks to the VA, the expensive medications and army of specialists are only costing me a few bucks a month in copays. Many scleroderma patients are not so lucky.
• My fingers still move enough to work a keyboard, if not as quickly or well as before, meaning I continue to work.
I’ve frequently pulled a rather … nautical vocabulary out of mothballs as I’ve tried to navigate this but I still choose to sing a merry melody from my cross. I mean, what’s the alternative?