“Never be afraid to raise your voice for honesty and truth and compassion against injustice and lying and greed. If people all over the world…would do this, it would change the earth.”
— William Faulkner
The piece of my last post that generated the most heat was my disavowing a real knowledge of the politics, but noting lots of contentiousness. Let me start by saying that I wasn’t meaning to imply a lack of interest, but of expertise and energy. I certainly didn’t mean that I couldn’t relate or had been spared; I got enough experience in LymeLand to get the flavor, on a smaller scale. It’s just this particular cast of characters that is new to me. It is true that I managed to escape being labeled or treated for most of a decade, until my family got sick too, but at that point I lived it.
In any scenario there will be individuals who are dishonest or simply assholes. There are others who are being true to their beliefs and intentions, but get caught in the cross-fire because of honest disagreement. The bigger issue I see expressed in my letters and what I’ve seen on the forums is a disaffection with the CAA. I haven’t spent any time in their sphere, but a quick look at their annual reports show that in 2009 they took in $1.7 million and spent $700,000 on research. In 2008, it was $1.5 million in and $350,000 out for research. In 2007, $3.3 million in and $265,000 for research! Here is their mission: Mission: For CFS to be widely understood, diagnosable, curable and preventable. Strategy:To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment. I think it’s safe to say they’ve failed rather miserably, even without being privy to all the sordid political details. In the world of political organizations, everybody gets to vote with their feet and checkbooks.
Every once in a while somebody writes something that indicates that they think that Ali and I are accessing treatment and medical care unavailable to others because we are privileged. We have Blue Cross Blue Shield of NM, a subgroup called The Pool. It is state mandated poor people’s insurance. We qualify for a reduction of premium by virtue of our income being some allowed amount above the poverty guidelines for a family of four. Our medical expenses have been running almost half of my husband’s take home, and until recently he was the only one working.
The reason I don’t have Medicare is because I was turned down for SSD. It took me a couple of years to apply, because I couldn’t believe I wasn’t going back to work and I thought it was retroactive. Then it took two years to get to the hearing with the administrative law judge. The judge was openly hostile to the idea of a doctor who could still read, write and use a computer, but not make a living. He had over a thousand pages of medical records, including a near death experience, and he thought I was faking. After the hearing he ordered a new psych eval. Because my house was going into foreclosure, a dire circumstance petition was filed and the judge turned me down. My case is in appeal.
My financial circumstances have also been adversely affected by the disbelief of my disease in my family of origin. I know from my mail that this is not a rare story. Many have been abandoned by family members who would have helped had they known that it was a real disease and not a character flaw. For some, the disbelief has been as damaging as the disease. My guess is this will strike a chord in many.