Journal of IiME Volume 2 Issue 2 FROM 2 SCORE AND 5 TO 3 SCORE AND 10 surprise, and looking forward to 2 plus decades, perhaps. In our case - in the case of we who contend with and accept the constraints and miseries CFIDS imposes, financial, emotional, physical - contrary to what Nietzsche said, whatever doesn't kill us lets us keep on living with CFIDS. Instead of moaning or grieving or thinking of what is lost and past, I am grateful for what remains. For the remains of the day. A small home with no stairs, children and grandchildren in touch though living in faraway countries (Singapore, Russia), friends constantly "there" on the internet and through email and in person. I still enjoy reading, writing, gardening, cooking, intellectual pastimes (i.e. thinking about sex but not doing much about it, raging and ranting about politics and voting by email, helping those less fortunate, playing scrabulous and earning freerice.com online and laughing hard as often as possible) and the very rare social occasion. A lunch with friends. A dinner out. A warm bath in the sea. Renunciation of consumerism. I used to wear glad rags, evening clothes, bikinis and the like. Now I wear Saucony sneakers in different colors and long pants, skirts, tshirts, shorts, and am fully dressed with a smile. Comfy. And make-up - what the heck - mascara, lipstick, blush to put as pleasant a phiz as possible on the face of this illness. And I watch my every footstep and try to avoid major hassles, aggro and agita. After burning out in two very high stress jobs in my 40s, in the 1980s (working for an Ivy League University as Administrator of a College of 500 freshmen and sophomores all brilliantly fraught, and then working for the US State Dept and USIA in Washington DC accompanying guests of the US Gov't on allexpenses-paid 30 day trips around the US (sometimes 9 cities in 30 days with no downtime, on call 24/7 very best job and worst job I ever had), I found (with Canadian friends) a small British island 90 Invest in ME (Charity Nr. 1114035) miles south of Cuba where I could live and work in a manana atmosphere in a hotel or real estate firm. A backwater, an island time forgot; only one hour by jet from Miami. A funny and friendly and laidback place; sign in a local's calabaza plot (calabaza, Caribbean orange pumpkin w. green skin, delicious) - "Don't Molest My Vegetables!". Cows still mosey down the island's one road with white cattle heron perched on their shoulders. The sea turquoise and calm and clear as glass. When asked "how are you" the locals reply "not as good as you", "can't complain", "keeping on keeping on" and "fine as sifted flour!". The weather is wonderful here, hot and sunny and salubrious - always summer - most of the time, except during hurricane season when I lost my home in Ivan 4 years ago. Sea went right through my home like Grant through Richmond. Sherman through Atlanta. Katrina through the 9th Ward. I had insurance and so was lucky enough to rebuild - "all new stuff" - , but no longer have any attachment to "things". So, there it is. A chronicle of decades of illness, but of hope as well. Hope that research and development will find a remedy for this global illness. Hope that the medical establishment will recognize this disease for the scourge it is, and will rename it something more worthy of respect like MS or ALS or AIDS or PD... instead of AST (Always Sick and Tired) or PCK (Pitiful Chronic Kvetch) or CFIDS, which doesn't do justice to the miserably lifechanging aspects of this illness. And to all of us patiently bearing the burden of this disease with as much humor as we can muster, I wish us comfort and happy times, a great measure of joy, surcease from suffering, looking ahead and knowing that life is full of surprises, many of them happy. Page 66/74 www.investinme.org
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