Shadowboxing No More:

Dispatches from the MS Wars

Excerpts from the 2004 notebook of a Carmel clinical psychologist who was also President of a local non-profit service group. The group is dedicated to helping bring patient-empowering services to the Central Coast population of “self-styled medical orphans” suffering from Multiple Sclerosis, an incurable debilitating disease of the central nervous system—one of the still-unsolved puzzles of modern Medicine. The persons cited below are composites of real patients to protect confidentiality.
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Hurrah: Good news! Today, August 1, 2004, our non-profit group, the Multiple Sclerosis Quality of Life Project (MSQLP) received a $25,000 grant from the Local Opportunities Fund of the California Endowment! This sum, combined with a previous $6,000 grant from our Local Community Foundation for Monterey County, as well as other grants from the EOS Foundation in Texas, Teva Neuroscience, Yellow Brick Road Thrift Shop, Monterey Peninsula Volunteer Association and other individual donations, will enable us to immediately hire a qualified Medical Social Worker/Case Manager on a half time basis to work with various MS patients in their own homes during the course of a year. The social worker will help them cope with the day-to-day energy-draining health and housekeeping problems that pop up; will mediate the accumulated estrangement what builds between chronically ill patients (with their repeatedly frustrated expectations of improvement or even cure) and their often beleaguered, harried medical providers (who self-protectively retreat, at times, from too-intimate a contact with patients to whom they know they can offer, at best, only palliative relief).

Now we can go ahead, too, with our plan of running regularly scheduled MS support groups at the Oldemeyer Center in Seaside, getting our newly designed MS web site up and running as an information and referral source for the whole tri-country area (Monterey, Santa Cruz, San Benito) and devising new ways to educate the public in general, not only about the social, economic and psychological ramifications of an illness like MS, but also of other similar chronic diseases whose victims, in our present “recidivist” era of increasing medical cutbacks, amidst continuing paeans to the glories of “privatization” (translation: good riddance to government handouts), wholesale clinic and hospital closings, declining numbers of adequately insured citizens, brutally mushrooming medical costs. Chronically ill persons have come to depend more and more on modest efforts such as ours. These efforts, I have come to believe, seem to be taking on an increasingly urgent sort of emergency room, survivalist role with each passing day.

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