Friday, October 1, 2010

"When you can't come back" by Dave and Jan Dravecky

The media are captivated by stories of people who fought back against a medical condition and now do difficult things like climb Mount Everest or run marathons.
They're not so keen on stories of people whose medical condition doesn't allow us to be SuperCrip like that.
For those unfamiliar with the story, Dave Dravecky was a professional athlete whose pitching arm was amputated due to cancer.  Now, if the media had their way about it, he'd teach himself to pitch with the other arm and come back to win awards.  He didn't.  He went on, instead, to be an inspirational speaker and author.
On pp. 41-42 of the book, he talks about a child he met at Sloan-Kettering before his surgery.  "As a mother, ... you long for heaven; then his suffering would be over with."  "I came away from my time with that boy and his mother with an enormous sense of sadness.  I was sad that we lived in a world where suffering was so ruthlessly impartial.  I longed for a world where good people were rewarded with health and happiness, where bad people were the ones who got the terminal diseases and died young."
And it certainly would be nice if the mean people who taunt CFS patients, bully them, verbally abuse them, would be the ones who got sick and the many warm, wonderful people I've met with this disease were miraculously cured, but that's not the way it works.
"On the first floor of Sloan-Kettering there is a mural .... One of the quotes on the mural is from a former president of the research center, Dr. Lewis Thomas: We are now beginning to learn how to ask very deep questions, and that is an immense step forward.  The answers will come inevitably, in their own time; that side of science is the easy part.  The hardest of all the tasks in research is to ask the right questions. ... I decided not to get mired in the question Why.  Instead I decided to ask 'What good can come out of this so that others may benefit?'"

We finally have researchers who are asking the right questions on CFS.  (God bless the Whittemores and Dr. Judy!)  As I said to Andrea Whittemore when we finally met face-to-face after months of internet communication, "thank you for getting sick."  The Whittemore family definitely opted for "what good can come out of this so that others may benefit?" and millions of patients are glad they did.
While he was in the hospital, Dave Dravecky was given a lot of books, one of which was by Albert Schweitzer, who commented "no explanation of the evil in the world could ever satisfy me ... I always held firmly to the thought that each one of us can do a little to bring some portion of [the misery] to an end."
Personally, I don't have the scientific knowledge to solve the CFS conundrum; I'll leave the research to Dr. Judy and her excellent staff.  But everything I did in life to this point led up to being well-prepared to be an activist.  I was a journalist, politically active, well-read and well-connected.  I may not know a Petri dish from a dessert cup, but I can write and I can lobby and I can educate.  And by telling my story, I can maybe bring someone else's misery level down by letting them know that someone understands.  There are others of us who've walked the same road, gotten the same abuse, and banded together to fight it.  I can't tell you how many times I've heard the story -- as has the author of The Spoon Theory -- that friends and family didn't believe the patient until they read in someone else's words the same thing their patient was trying to communicate.  It's not just their lazy Susan exaggerating for sympathy, but here's this published author saying the exact same things about how the disease affects her.
On pp.70-71, Dave talks about a letter he received from someone lecturing him that he'd be healthy if his faith were stronger -- how many times have we all heard that?  "What struck me is that this guy had so many answers for my life, and he didn't even know me.  He was a complete stranger, yet he was confident he had a road map from God for my life."  I've gotten the lecture, too, but over the years since getting sick, my watchword has become "God answers all prayers -- sometimes the answer is No."   Begging to go back to my former career may be my plan, but maybe it's not God's plan.  As I said, everything I did before prepared me to be a CFS activist.  Maybe, just maybe, God wants me flat on my back, touch-typing on a computer with my eyes closed against light sensitivity, educating people.
At first, I tried going to church; it made me sicker.  Not just the physical exertion of getting to church meant that I might not make it through the week at work, but also the many people who wouldn't let a little illness keep them from attending church.  My immune system was struggling, and being in a confined space with that many germs guaranteed I was going to come down with something.  Every single week.  I finally came to the realization that if God wanted me to go to church, He would put a protective bubble around me so I wouldn't get sick and have to take Wednesday, Thursday and/or Friday off work every week.  Or he'd provide another source of income so I didn't have to worry about losing my job from being out sick half of every week, but even if my doctor found some way to get me onto Disability (CFS alone was not an acceptable diagnosis to support a Disability claim in those days), the payments were approximately equal to the rent -- nothing left for food or utilities, so Disability was not a suitable "alternate source of income".  Unless and until one of those protections came about, I had to accept that I was not supposed to go to church; I was healthier if I stayed home in bed resting on Sunday mornings.
The "faith healer" praying over me accomplished nothing; neither did a friend's entire convent praying for me to be cured.  Clearly, God's answer to all that praying was No, and it didn't matter how much faith or how many prayers were sent up and candles lit.  God had something else in mind that was not "cure" and I just had to live with it.
The Post-Exertional Relapse means that it would be foolhardy for me to even try to match up to the media darling SuperCrip who takes up marathoning or mountain climbing -- if it doesn't kill me outright, it might render me permanently bedridden.  All I can do is be the best me that I can be, maybe not with flashy physical stunts that attract the attention of the media, but with the talents I do have left. 
And one of those is having the backbone to tell the world that I am not going to kill myself trying to be SuperCrip.  Buzz off, I will do what I can without endangering my health, and no more.  If that means I don't go back to work full-time, well, then I don't go back to work full-time.
The part of me that danced all night and hiked for miles and played hours of baseball and volleyball is amputated as surely as Dravecky's arm.  I "can't come back" in those ways.  But I can still write and type and advocate, and that's what I'm going to do.  With the assistance of the excellent researchers at Whittemore Peterson, I'm hopefully going to feel well enough to write a book about my journey with CFS and be interviewed on radio and TV about it.  If not, I'll continue with this blog and forego the media spotlight.  The important part is that I do my best to alleviate suffering by letting other patients know they're not in this alone.

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