Thoughts for the day

I've been listening to "Evita" lately, and came up with two sections of the lyrics that are especially meaningful now, even though there were other portions I related to when Michelle first played the album for me 25 years ago.

Both come near the end of the show, as Evita's body is rebelling.

Eva:
The choice was mine and mine completely
I could have any prize that I desired
I could burn with the splendor of the brightest fire
Or else I could choose time
Remember I was very young then
And a year was forever and a day
So what use could fifty, sixty, seventy be?
I saw the lights and I was on my way.
And how I lived! How they shone!
But how soon the lights were gone!

As anyone who knew me 20-30 years ago could tell you, I was on a turbo-charged trajectory that was predicted to end at the White House.  And, in fact, the hardest part of living with this damn disease has been explaining to former classmates why I'm not President, or at least in Congress, by now.

Still, because I chose to "burn with the splendor of the brightest fire", I'd accomplished more by the time I got sick than many people accomplish in a lifetime.  Would I give up my past accomplishments for health today?  I'm really not sure.  Certain of them, probably not.

And the political background has its benefits these days, as I lobby various government agencies and officials to take CFS/fibromyalgia seriously -- the problem is not that they don't exist except in patients' minds, but that the clues of physical causes are being ignored, so no definitive objective tests have been developed.

Eva: I'm not that ill. Bad moments come, but they go. Some days are fine. Some a little bit harder. But that doesn't mean we should give up our dream. Have you ever seen me defeated? Don't you forget what I've been through and yet, I'm still standing.

I'll admit, some days I'm more leaning against a wall than standing under my own power, but I've never been defeated.  Fallen back to regroup and come up with a new plan of attack, perhaps.

"The choice was mine and mine completely.  I could have any prize that I desired."  The prizes I desired 30 years ago (mostly) became mine.  The same drive that got me those prizes has kept me standing and will get me the ultimate prize -- government funding that finds a cure.

I haven't given up on my dream.  It'll be a little harder to achieve having to restart at this age, but I still think the possibility exists for a cure that will get me back on my road to the White House.  (OK, at this point, I'd settle for being invited to dinner to celebrate the cure, but President Karen still sounds pretty darn good.....)

As the New York Mets used to say "you gotta believe."  

HAPPY (?) ANNIVERSARY TO ME

On March 4, 1988 -- 18 years ago today -- I got the diagnosis that changed my life.

My whole family remembers the day, my uncle's 52d birthday.  When I got back from the doctor, I called where they were having the party and repeated to each of them what the doctor had told me.  Good news, the problem had a name; bad news, the problem did not have a cure.  But I was assured that doctors were working on it.

Little did any of us suspect on that fateful day 18 years ago that in 2006, we would still be waiting for science to provide even an effective treatment, much less a full-scale cure.  CDC had a cure for SARS in 8 days -- 18 years later, I'm still waiting!  Why? 

Dr. Peterson suggests the reason is politics, and I'm inclined to agree with him.  Over the past 18 years, government money earmarked for CFS research has repeatedly been diverted to research more politically-correct diseases.  Even after an audit required that money to be returned to the CFS budget, a cursory review of the research attributed to CFS showed that some of "our money" was still being used for things having little or nothing to do with "our disease".   

Sure, denying the existence of CFS as a valid physical illness saves the government a great deal in Disability benefits.  But, speaking only for myself, the amount the government would be paying out for benefits (if they'd ever give them to me) is about equal to what I would be paying in in taxes if I were able to go back to work as a paralegal.  To me, this looks "penny-wise and pound-foolish".

Meanwhile, I'm on austerity budget -- the government's not getting much in taxes from me, because you don't pay sales tax on groceries. After deducting the cost of my health insurance, my Schedule C earnings aren't enough to owe income taxes on.  In what way is this beneficial to anyone?

I'd like to use the occasion of my anniversary to call for the government to finally take this disease seriously.  Maybe by my 28th anniversary, they'll be able to give me a real future, instead of excuses.