Journal of IiME Volume 2 Issue 2 www.investinme.org FROM 2 SCORE AND 5 TO 3 SCORE AND 10 A personal view of ME by Nan Socolow My story is similar to all other PWC's (people with CFIDS = people with ME) stories. First the signs and symptoms - bizarre, strange - unlike any other illness we've had. Then, the disbelief, the almost endless search for understanding physicians to name this disease, the expense of medical tests, treatments, forays into alternative therapies (is it all in my head? The mind/body connection?), the vials of useless medications and antibiotics adding injury and insult to our bodies and psyches. Finally, diagnosis and the shock that something chronic was wrong with us, the acceptance of a disease with a name even if the name was "Yuppy Flu" or "Major Kvetch Illness" or Encephalomyelitis. "ME" - Myalgic In short, CFIDS. And resoundingly, the resulting conviction that we are the canaries in the coal mine, the thin edge of the wedge of pollution of the water we drink, the food we eat, the air we breathe, pollution that is causing illness on Earth. My CFIDS started in 1983 when Epstein Barr and Post Viral Fatigue Syndrome were the buzzwords. I was a vital 45 years old, divorced, active and hardworking mother of 3 teenagers, maybe a type A alpha female in linen jackets, silk blouses, heels and hose and smartly bobbed hair. A flu, followed by some sort of existential, clearly felt defining moment - a "click" in my body - changed everything in my life from major to minor and I endured a draconian fluish feeling for months and months and months. The "hit by a truck" poleaxed feeling, the extreme hangover that never goes away even though alcohol is not tolerated, not even a sip. You are familiar with the symptoms - if you're reading this piece in the Chronicle - I won't list them here. But if you've almost fainted in detergent and soap and scented candles and air "freshener" aisles of your supermarket, Invest in ME (Charity Nr. 1114035) Nan Socolow Nan Socolow is a poet who has lived for 20 years on a small island 90 miles south of Cuba in the British West Indies. She was Director of Development at Ford's Theatre in Washington, DC, Administrator of Rockefeller College at Princeton University, a Language Services Escort Officer of the US State Department and United States Information Agency. She worked in the White House during President Carter's Administration on the first Arab-Israeli Peace Treaty Signing events. She has three children and four grandsons and CFIDS). almost keeled over upon entering a department store with the scent of tung oil on new clothing, almost collapsed upon having your car's gas tank topped off, almost passed out from the sensory input (aural, physical, emotional, etc) in any airport or crowded public place, reeled from a few sips of beer or champagne or a gin and tonic, then you've been there, too. The remissions and flare-ups. The awful days, when one could barely get out of bed, and the better ones when a drive to the market was a possible endeavor. The little wee walnut-sized life when everyone else is out there in the can-do life broad as Montana. The good news is that I have had CFIDS for the past 25 years. The bad news is that I have had CFIDS for the past 25 years. I am now 70 years of age, to my great (continued on page 66) Page 65/74
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