Friday, October 22, 2010

Free at last, free at last, Thank God Almighty, we're Free at Last!

In response to the JAMA article posted the other day, one of our Facebook readers noted: "Once the light shines where there was no light before, it ends up taking over... an unfailing principle."
The light is beginning to shine in those dark places. 
Rome wasn't built in a day and the notion of CFS will not morph into HGRAD overnight, either, but we've reached the cusp of "and then you win".
It takes, on average, 17 years for information to go from research labs to common practice, which is much shorter than the length of time it's taken us to get to this point.  Yes, 17 years seems like a long time, and it is, but we're also past the halfway point in our quest for full recognition, which started 26 years ago.
I'm not denying that the next 17 years will result in even more of our old-timers (maybe even me) dying off, either from old age (in 17 years, I'll be pushing 70, and many of our leading activists will be hitting 80) or from the progressive effects of the disease.  There are some of us who will lose our personal battle before the war is won.  But nonetheless, we're now on the downhill portion of the battle, so kick back and enjoy the ride.
Some people have asked me how I've avoided getting depressed, as so many patients do.  I was diagnosed by an Ivy League-trained virologist, who assured me that he personally was working on it.  Knowing a genius like him was researching, I had no doubt that the answer would be found.  Despite CDC's foot-dragging, I knew there were other, patient-funded researchers working on it.
Just when I was starting to give up hope, Dr. Judy appeared on the scene, and that scenario fit the Hollywood script we'd all imagined it: dedicated parents will give everything to cure their daughter, *female* doctor who doesn't suffer the misogynistic delusion that all women want to be housewives, and, a triple threat, "trained as a cell biologist, molecular biologist and virologist" with experience in "immune response to retroviruses". 
It was just a matter of all the pieces falling into place, the Whittemores meeting Dr. Judy, who just happened to be tending bar while looking for another science job, and therefore, in the right place at the right time, available to head up the Institute the Whittemores were starting.  And Dr. Judy just happening to have the right background to find what needed finding.  And Dr. Judy just happening to have the right temperament to withstand the slings and arrows that the male medical establishment will fling at anyone (especially a woman) who dares to challenge status quo.  They were able to break Elaine DeFreitas and ruin her career, but Dr. Judy seems able to power through – which may be a generational thing: Elaine's generation was raised to defer to men and needed their consciousness raised, while Judy's generation takes equality for granted and thinks nothing of getting in the face of men.  More importantly, the bulk of Judy's funding comes from the Whittemores and other patients; losing government grant money isn't going to kill her career.
We're getting there.  One step at a time.  The chinks in the psychologizers' arguments are starting to be noticed outside the CFS community.
To quote some of the most inspirational language I know, in a similar situation:
"I have been to the mountaintop.  And I've looked over. And I've seen the Promised Land. I may not get there with you. But I want you to know tonight, that we, as a people, will get to the promised land!"

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