January 14, 2004
The Jupiter Courier
Jerry Lewis lied to me.
OK, maybe not to me personally.
I grew up with his annual Labor Day telethons. And his closing rendition of "You'll Never Walk Alone" served as an inspiration. Not only to his "kids" with muscular dystrophy, but to anyone afflicted with a serious illness.
Ten years ago I was diagnosed with multiple sclerosis. Today I cannot walk, and my neurologist classifies my illness as chronic and progressive. To me, the "chronic" speaks of today but the "progressive" looks to the past and predicts the future. My battle against that prognosis employs an array of pills, injections and physical therapy.
The people around me — my wife, a smattering of relatives and friends — try to understand my condition as it affects my life. And how it ultimately affecting theirs. Their frustrations underscore the need for more support groups for caregivers and others affected by disability. My wife takes on the role of lead gladiator, but her armor understandably wears thin from her own anguish. In many ways she is as much of a patient as I am. Fortunately, she has neither the symptoms nor the diagnostic tests to prove it.
A real breakthrough is not likely in my lifetime. Until the federal government provides significant resources with a Kennedy-esque moon-launch commitment, most diseases will surely march unscathed into the 22nd century.
For a patient, the struggle to live with a debilitating illness is solitary. It lies deep under our own skin, regardless of the number of people trying to lend their support. Don't get me wrong; caregivers are allotted a special place in heaven. But in the end the buck stops with me.
Getting in and out of bed. Crawling and groping to position myself for sleep. Certain aspects of toileting, bathing and dressing. Cutting food with a knife and fork. None go unassisted.
The feeling of being violated when faced with inaccessibility. An aisle blocked in a store with displays. A car blocking my van access parking space. Houses without ramp access and with hallways sporting 90-degree turns impossible to negotiate.
Nobody around me can begin to understand my profound degree of frustration and helplessness.
Screaming and yelling are of limited value. They are simply an annoyance to those around me, producing more than a few scowling faces.
Jerry Lewis may embrace Oscar Hammerstein's lyrics, but frankly I don't
Copyright © 2004, The E.W. Scripps Co.