Nancy, such a common name for such an uncommon woman. I have my disease to thank for placing Nancy in my life. Alone, in pain and looking for help I turned to an online support group. It was here I met my long time friend “C.” “C” and I got to know each other after he threatened to boot me off the group for joking around with a few folks, something against the rules. (Not so much against the rules, but i was doing it in the wrong way)
Long story short, he and I became friends. When he founded the FMS Community I jumped on his train to help however I could. I became a moderator on the support group and began to work with both “C” and Nancy. Egad, was that really eighteen years ago?
No slacker herself, Nancy, a former financial whiz from Boston, stricken with her own chronic pain founded a 501(3) non-profit org. called the “CSSA.” She was president, treasurer, researcher and public relations. She and a small group of others collected donations, networked with medical professionals and published a newsletter mailed to subscribers, all while dealing with her own health and family issues and…keeping up with her job as moderator for the Fibom-L online support list. She is also a talented photographer with work in quite a few collections, I am lucky enough to have one of her framed works.
I watched with cautious eyes when I realized she was caring on a “flirtation” with my pal “C.” Not out of jealousy as I am in a long-term, stable relationship, but out of concern, not wanting my friend to be hurt by a conniving woman! Worry quickly morphed from respect for a strong woman to love for a dear friend. Her and “C” met in person and never parted again. They not only joined in marriage, they blended the two organizations and we became one happy family, with Nancy handling the financial reins and legalities of maintaining a 501(3) non-profit standing.
Fast forward to 2012, my strong, intelligent, compassionate friend who wielded her computer and cell phones like weapons as she cut a swath through research, misconceptions, myths and lack of support for very real, very painful conditions, can’t even turn on her own computer.
Diagnosed with Stage 3 dementia at a young age she can’t remember how to use her computer or dial a phone. Her short-term memory is sketchy and her health is failing.
I am angry, PISSED that the universe has handed her one more blow. It’s as if taking away her health and striking her down with chronic pain wasn’t enough. The fates that be weren’t happy until they took her mind too!
I am grieving for “C.” He was a thriving musician, disc jockey and printer before chronic pain and other conditions took control of his life. He is a caring, open-minded, generous and intelligent man who had lived alone for far too long before he found Nancy. Now he struggles with her comfort and his own feelings of loss and anger.
IT’S NOT FAIR DAMMIT AND IT PISSES ME OFF!
Those who can approach their doctor and mention the term Fibromyalgia without getting laughed out of the office as the doctor tells you it is all in your head can thank Nancy. In our day nobody believed our pain was real. We were fed anti-depressants and told to lose weight and exercise more. Hell, I was 120lbs soaking wet with a highly physical job, and they STILL told me to lose weight and exercise, and maybe see a shrink.
Nancy fought day and night, shelling out thousands of personal dollars to find answers. She offered support and information to those floundering in a sea of medical professionals that thought of us as a joke. She met and worked with researchers on the cutting edge of progress. She formed friendships with medical professionals and authors who suffered from chronic, unexplained pain and fatigue who wanted to find answers. She worked with Devin Starlanyl and others, keeping up with research and funneling that knowledge to us via CSSA.
This is a personal blow for me, but I want every person who can now talk to their doctor about FM, CMP, IBS, Sjogrens and other conditions without feeling like a mental case to give credit, and thanks to this hard-working, generous, genius of a woman.
It is time to let her rest and be taken care of, but dammit, if I have anything to say about it she will be thought of as a champion, a loyal friend and dominant force in the fight against an uneducated system that refused to look for answers until public outcry backed them into a corner. Nancy stood at the front of that mob, using her phone and computers like an electronic megaphone.
I thank you and I love you Nancy. My world is better because you are in it.
c2012 Jane Kohler