The End of an Era or A New Beginning.
On January 2, 1995, I got the flu. Over the successive weeks it repeated two more times. Then my friend and mentor of 25 years died unexpectedly and I was impacted. Unbeknownst to me at the time, that was a trigger. Days after the funeral, and in a heartbeat, I was stricken by a tidal wave of disease, a flu times ten that left me bedridden for more than a decade. It's hard to imagine having the flu forever, and it's difficult for physicians to treat an invisible disease as they are prepared for patients to either get better or die, not to remain chronically ill. When blood work is inconsistent, medical personal, family, friends, associates and insurance companies suspect a psychological disorder and terms like hypochondriac and malingerer become commonplace and part of your medical record.
Stories like this are not unique to me but affect tens of thousands in this country and millions globally. It is a spectrum of illness woefully overlooked in medical schools and repeatedly misdiagnosed in treatment rooms across the land. When this occurs, patients worsen and are guaranteed lost jobs, broken marriages, displaced housing and a lifetime of disease. When I had been sick for over a year, with my wife's help, we put out the call for a support group. She lead me into a church meeting room and there were 30 people with the same story, most at their wits ends. And so it began. It's a complex tale that spans two decades, and with immense support, we became a 501(c)3, issued newsletters, engaged speakers, staged annual May 12th events, developed a web presence, produced numerous videos, a 60 minute documentary film, issued three medical scholarships at the University of Vermont College of Medicine, and published the book, “We're Not in Kansas Anymore: Chronic Fatigue Syndrome and the Politics of Disease”. Most recently we came to the aid of a family in distress with access to quality medical and financial assistance and for that I am proud. That's what support groups do.
It's been 21 years. Five years ago I had heart surgery and with a new heart valve my recovery found me able to do things I hadn't imagined in years. Not that it was a “cure”, but there isn't anyone who walks in these shoes who wouldn't take what I got. I am thankful every day that I am not dead. I am thankful every day for a new lease on life. My new perspective has me playing catch-up, trying to make up for 17 years of extreme disability. Since the surgery, I have found employment with a market and catering company, honed my skills as a photographer and web designer, promoted a film and published a book about the Vietnam War, and once more became an active participant in our family life. I can't work hard enough or fast enough. I'm old now. The clock is ticking.
At this time we have to address the 501(c)3. Before being ill, I owned a furniture store. I understood buying and selling, profit and loss, hiring and firing. I have no such understanding of non-profits. Non-profits rely on generosity, grants, and fundraising, all time-consuming and removed from the initial goals. For the 20 years we have existed as an organization we have held it together by a thread and now all is out of pocket. That has to end. I don't have it in me to take the time to coordinate fundraising efforts. We have an august community of skilled physicians and researchers right here in Vermont with a profound understanding and grasp of this hideous collection of diseases. The research initiatives at the University of Vermont have global implications. We have a board of directors, our tax forms are current, our web hosting is in place for another year.
This letter is to announce my retirement as director effective January 1, 2017. With any kind of luck, we can find a successor.
This letter is a call for that person or persons.
Thank you for your continued support,
In health and wellness...