(not my shoes*)
(these are from Wikipedia)
I AM ONE OF THE #MILLIONSMISSING
I am being represented in Washington by a pair of my shoes.
Black high heels I used to wear to work, and when giving physics presentations such as the one I gave in the week of November 5, 1989, at the American Physical Society Annual Meeting of the Division of Plasma Physics in Anaheim, California.
I came back from that meeting with a raging fever; my doctor had antibiotics waiting for me, but I never got well again.
I was diagnosed with Chronic Fatigue Syndrome by an infectious diseases specialist. I was lucky; in those days getting a diagnosis was hit or miss, and the stories of people misdiagnosed for years were rampant even then.
Lucky – in the sense of knowing what was wrong. But the specialist and I looked at each other; he knew he was conferring a walking death sentence. I knew, even back then, that nothing would ever be the same.
It hasn’t been.
Research money allotted by Congress was diverted, many if not most doctors still don’t believe it’s real, and they still tell you it’s all in your head, to buck up and get some exercise, and stop goldbricking. The ones that acknowledge its existence have nothing to offer as a cure; treatments are palliative; and nothing lets you go back to what you were.
May they rot in whatever level of hell is appropriate.
It really shouldn’t be my job to figure out my illness, should it?
Back to Washington – and Seattle, and Melbourne, and…
Someone with far more energy than me – or their friends and families – has organized a Stand In. With the rubric #MILLIONSMISSING, they asked us to send a pair of our shoes, and a single choice of what we are missing the most in our lives.
I wrote: ‘I miss research physics.’
Someone from #MEAction will take these pairs of shoes (*I don’t have a picture of mine – that would have been too organized, and I had to work very hard to get my pair mailed as it was), and make a display so that the media and legislators have some idea.
There are millions of us worldwide – and somehow we have been left to cope with a huge public health disaster which robs society of the work we would have done – by ourselves.
At least, that’s how it’s felt to me. There are no specialists in New Jersey. There are a few in the nation, and many quacks, and many non-specialists doing the best they can dealing with symptoms. Some elaborate protocols that supposedly help – but require many months of elaborate regimens of supplements that I can’t even think of following; those are often used, at their own expense, by people so sick they have to do something.
But with no diagnostic criterion and approved treatment, insurance companies are reluctant to pay what should be their part – and very sick patients have to wrestle with getting both care and payment.
Not that there is a standard of care.
It’s getting more common to know someone with CFS
Or ME as some call it, or CFIDS, or the laughable SEID, or Yuppie flu, or chronic mono, or… The ‘experts’ spend much time arguing about these details.
Me, I think it’s going to turn out to be a post-viral thingy: you get something, it wreaks destruction, the virus may or may not stay around, but your cells no longer manufacture energy from your food.
I imagine a whole bunch of other complicated syndromes with some of the same symptoms, from Gulf War Syndrome to chronic Lyme, may benefit when researchers finally figure out how this works.
Meanwhile, those of us who have these things wish we’d had Ebola. Or HIV. Or TB. Or leprosy. Or anything that used to be a death sentence and is now managed, in many cases, by modern medicine.
Have a happy day – and give us a passing thought. And a prayer.
And understand we are not lazy, and are certainly not getting anything out of this.
And all we want is our lives back, so that we can go back to contributing to society the way we were doing when hit by the random freakish act of Nature.
There are an awful lot of us. Millions. And we are missing. From our lives – and from yours.
What can you do? Be aware. There are foundations of patients supporting research, and activists, and support groups if you want to contribute with your volunteer activity or financially. I belong to the New Jersey CFS Association. I can’t tell you which is most effective, but MEAction organized this event.
Just for today, I will remind you that Kary Ashe, the heroine of Pride’s Children, has CFS – and copes as well as she can, while trying to contribute SOMETHING to the world. Symptoms vary all over the map in severity; she is one of the possibilities, in many ways typical.