Citizenship in the World of the Lame and Infirm

As illnesses go, MS appears to be a fairly popular malady with the able bodied.. It's not so grisly as to cause people to turn away, and common enough so that a great many people have had personal contact with someone afflicted. As human misfortunes go, it's bad, but only moderately bad. You don't get it through any behavior that causes others an awkward moment. A good deal of the credit for our favorable public perception belongs to the National MS Society. This group raises money, funds research, educates the ranks, and provides a myriad of other useful services. We lack only a formal cotillion to rank with the more hoi polloi of societies. We have our stable of celebrity fellow travelers who attempt to keep the illness in the public eye. The incendiary Richard Pryer, Annette Funicello, and Teri Garr being notables. Dr. Kavorkian shined the public light on MS a few years back when he ushered one of our brethren into the hereafter. The good doctor went to prison for this questionable act of compassion, seemingly unable to provide the court with a convincing rationale. The illness is, after all, not fatal and rarely results in pain for the patient. It probably is seen as more destructive than it proves to be for most people. This may be because it tends to afflict young adults during their most productive years

Induction into the subculture of the chronically ill carries with it certain responsibilities. I am obliged, for instance, to follow prescribed medical advice. I receive this counsel during my regular visits with my Neurologist. I'm told Doc Brooks is something of a giant in his field and I'm fortunate to have him on my team. He doesn't like to rush people, he never appears impatient when I prattle on and on. He's the kind of doctor we like to pretend characterizes the profession, but in truth are pretty rare. His sister has MS, which I think imbues him with a special sensitivity to my predicament. My visits invariably entail a lengthy wait in the clinic's waiting room. Giants, after all, are busy people. On my most recent visit the available reading choices were Golf Digest, Conde Nest Travel and Runners World. Neurologists it would appear, are a sturdy, well traveled lot. Neurology waiting rooms on the other hand, are the home court of the lame and the infirm. The old guy dozing in his wheelchair appeared as disinterested as myself in news that light weight carbon fiber materials could cut at least two strokes from our games. Doc Brooks only treats two illnesses, mine and one called Amyotrophic Lateral Sclerosis or ALS, sometimes referred to as Lou Gehrig's disease. The latter is a truly grim illness, and his willingness to take it on as his life's work strikes me as courageous. Seeing the ALS patients in the waiting room invariably prompts me to count my blessings.

I sometimes attend a support group for the opportunity to commiserate with others similarly afflicted. The attendees run the gamut from minimal to severe disability. Time is generally allotted at the onset of these meeting for the recently diagnosed to introduce themselves and say a bit about their circumstances. I recently heard such a fellow haltingly opine "I think that I've accepted my diagnosis and I can
live with it. I've come to realize that far worse things can befall a person". I'm pretty sure that what this fellow meant to say was "What a fucking raw deal ! If I could track down who or what did this to me I would smite them down with great vengeance!". Or perhaps that's just me. There are, undeniably worse things that can befall a person. I could, for instance be squished flat by an asphalt roller as I cross the street to get my mail or have my eyes plucked from my face by a California Condor while sunbathing. These truths, however, have never provided me with a great deal of solace.

Like any defined subgroup of humanity, those of us comprising the ranks of the lame and infirm aspire to comport ourselves with dignity. We have certain unspoken expectations of ourselves. One should, for instance, strive to remain stoic and brave in the face of ones misfortune. Second only to remaining stoic, the bearer should remain above the temptation to seek "secondary gain" from ones bad luck. Secondary gain, dear reader, is any effort, overt or covert, to seek advantage or special treatment as a result of ones misfortune. These things, like so many others, are not always perfectly clear. Using disability parking spaces would not be overstepping. Accepting advancement ahead of others in the grocery store line would be. Accepting preferential advancement in the long lines at Disney World would fall into something of a gray area. My own covertly held belief is that accepting and seeking secondary gain is fine, in fact, only fair given the injustice of affliction. I do, however, try to cultivate this subtly so as to not appear opportunistic or crass.

Those of us in the ranks of the chronically ill are frequently reminded that we need to educate ourselves and take an active role in our treatment planning. Towards this end, I will occasionally attend educational forums. These gatherings are often funded by one the major player drug companies. There is usually a Neurologist to update us on any promising advances in the field. Sometimes there is also a practitioner of one of the "complementary therapies". With the exception of the aforementioned injectable there haven't been any major breakthroughs in treating MS in recent years. Absent such good news someone somewhere seems to have concluded it might be easier to engineer a breakthrough in the public's perception of the illness.

At a recent conference I was introduced to what the sponsors were terming the "new face of Multiple Sclerosis". The "new face" was attached to a female panelist in the employ of the sponsoring drug manufacturer. She had traveled to our gathering from Boston to engage us as a "motivational speaker". Her goal was to inspire those of us who might be feeling a bit discouraged. She was a pert and attractive gal in her late thirties. She indicated she had been diagnosed with MS several years ago after a brief and transient experience of symptoms. Thankfully, she reported, those symptoms had not returned. It bears noting that approximately 15% of those formally diagnosed with MS have what the Mayo Clinic terms " benign MS". This means they may have few symptoms, no discernable disability, and may be fortunate enough not to develop either. These lucky devils occupy the upper tier in the social stratification of the lame and infirm, and they tend to irritate the rest of us. She told us she had been an interior decorator prior to her diagnosis and a long time recreational runner. She prattled on at great length about having run the previous two Boston marathons as a self appointed representative of MS sufferers everywhere.( She had not, I wish to insert, actually earned an entry into the race but had availed herself of the societies freebie pass), Perhaps fearing we'd find her account a bit gloating, she acknowledged having finished way back in the pack. She was, she pledged to us, taking on this daunting challenge on behalf of the rest of us. She reported that as a result of the race she received some press attention and she'd recently been chosen to participate in a sponsored climbing expedition to Mt. Denali. I'm pretty sure she'll be scaling that mountain on behalf of the rest of us as well. And, should there be a film or an invitation from Oprah, well, I'm confident that she'll be shouldering those on our behalf as well. You could almost sense the discouragement beating a hasty retreat in the face of this gal's spunk. I'm very confident that existing treatments will prove more efficacious with this "new face" than they have with that old face. Seemingly afire with motivational zeal, our speaker was not put off one bit by the room full of "old faces" politely listening to her self congratulatory remarks from their wheelchairs and scooters. This "new face," I thought to myself, sure seems a better deal than the old. But again, perhaps that's just me.