For the nearly 18 months I've been at dKos now, I've been carefully and deliberately concealing a central part of my identity. The facts I have revealed are true: I am a professional writer from Vermont, who grew up in Hawaii. As a Kossack, I have reveled in being the silly and sassy "earicicle," snarking away at the expense of ridiculous R's (thanks for the easy pickings, guys!) and dumbass trolls. I love goofing around in masterpieces by droogie6655321 and The Termite. I delight at trading innuendo in entendre-laden JeffLieber rants, and racy threads all over the site with DemocraticLuntz.
Recently, I have written some personal diaries: spontaneous outpourings of emotion, on dark nights of the soul. You have responded in ways that moved me deeply. It seems you know me better than I thought you did.
And so I want--I need--to confess to you this: Twenty years ago today, on June 1, 1989, I got sick and nearly died. I've spent the last 20 years fighting for my life. Fighting to survive. I can't keep this secret from you any longer.
In my time here, I've watched and applauded while other Kossacks speak bravely of their struggles with chronic illness. And I've started to feel more and more like a fraud. Sure, it's been fun to have a place where I don't have to wear the labels I've been fiercely trying to shed for two decades. Sick. Disabled. So I go into these diaries, and show compassion--deep compassion--because I know the subject intimately. But I've concealed the fact that I wear these labels too.
The Readers' Digest version of my odyssey: I came down with a case of Chronic Fatigue Syndrome that almost killed me. From 1987-89, I worked at a boarding school that made The Dead Poets' Society look like summer camp. The sleep deprivation and stress wore down my immune system. 1989 was one of the rare years of a NY-HNL nonstop, and on the long flight home, I'm certain I was exposed to CFS's triggering agent. Virus, retrovirus--nobody yet knows the cause, and few research dollars are being spent looking for it. But many CFS patients report becoming ill after flying when their immunity was suppressed. At first, I thought I was just suffering from extreme exhaustion, then maybe a bad flu I couldn't shake. I dragged myself through most of the next school year in California before completely collapsing.
The name "chronic fatigue syndrome" not only minimizes the severity of the illness, but it also frequently engenders derision and disbelief. (Technically, the name is not even capitalized--talk about gettin' no respect!) The Brits call CFS "Myalgic Encephalomyelitis." This sounds a hell of a lot scarier, and rightly emphasizes the complex involvement of the muscles, brain and nerves in this disease. Patients usually have a difficult constellation of physical, neurological and cognitive symptoms. I was incredibly lucky to get an accurate diagnosis in 1990; today, 90% of the one million Americans conservatively estimated to have CFS are still not properly diagnosed.
I was also incredibly lucky to have some place to go and someone to put up with me. (I was a fun patient--NOT!) I needed fulltime care for years. I could not shower unsupervised (I sometimes fell), prepare my own food, or hold the phone (my hands were too weak). I was unable read, watch much TV or listen to music (too intellectually demanding). Even wearing clothes hurt because my muscles and joints were in constant agony. On an inappropriately prescribed medication, I gained 50 pounds in six months. Another 50 pounds crept on over the eight years I was unable to tolerate exercise. For a former anorexic, becoming truly obese was emotionally as well as physically devastating.
"But this story seems just sad so far, ear," you're thinking. "Where's the promised celebration?" Last October, I read a sentence here at dKos that took my breath away.
I have decided to celebrate this anniversary as a blessing and not a tragedy.
It was from a diary by Iraq War veteran Broken Skull:How an IED got me to vote. (I got blown up 5 years ago today).
I was injured in Mosul, Iraq when an improvised explosive device (IED) sent shrapnel into my brain. Throughout the last five years, things could have gone one way or the other, from possibly not living through the initial blast to not ever becoming a functioning member of society. It has been a long tough fight and it has never been easy. I have fought every step of the way, sometimes fighting myself and loved ones along the way.
Broken Skull's diary shook me to the core. Because I also remember wondering if I was going to live or die. If I would ever become a functioning member of society again. I remember fighting every day. Fighting for miniscule things that no one ever saw. It sometimes took hours to gather my strength so I could walk ten feet from my bed to the bathroom. Because that was something I was determined to do on my own, even if it meant crawling there on my hands and knees.
I wrote down his simple sentence: "I have decided to celebrate this anniversary as a blessing and not a tragedy." I looked at it again and again as this 20-year mark loomed.
Broken Skull, you made me DETERMINED to celebrate and not to mourn. Until I read your diary, I think that I had been quietly losing a battle within myself. I've fought HARD to maintain a positive attitude. I've chosen to laugh at most of it all rather than to cry; to allot myself a ratio of 99.99% gratitude and only .01% self-pity. I survived, when others haven't.
And yet, around the edges and into the middle of my consciousness was creeping this feeling: I've lost all of my adulthood so far, and I'll never get it back. Half of my 20s; all of my 30s; half of my 40s. Twenty years gone to a desperate fight. I was beginning to mourn, Broken Skull, for all that I had lost. The dating I never did; the relationships never formed. The husband I should be loving and supporting by now. The babies I never bore; the children I should be raising. The faded friendships; the new ones never made. The career, just now in its infancy, when it should be in its prime.
But you took shrapnel to the brain, and you are counting your blessings. Oh, Broken Skull--how can I ever thank you? Because you reminded me to count my blessings. And there have been so many. So many that tears now fall--happy tears--as I try to begin a tally. First among them: My mom, who never gave up on me. Never gave up, even though she's the "planned obsolescence" kind of parent who certainly did not relish an adult daughter landing on her doorstep. Especially one who managed to be obstreperous and profane while remaining otherwise completely nonfunctional. Such a charming combo!
She still supports me today. Emotionally, financially--in every way. But mostly she gave me this: her mulishness. When I was told, at 27, that I was retired on total and permanent disability, that I'd never work again, and that there was no treatment or cure for my condition, my response was: HELL TO THE NO!!! Willfullness and stubbornness and defiance of authority--those qualities that perhaps were not so entertaining when I was a rebel-without-a-clue teen--fueled my drive to get well.
So many other blessings; so many other people who lived the message of Matthew 25: "Whatsoever you do for the least of my brothers..." Because there were times when I was hungry. And without shelter. Without medicine. Really bad stuff happens when you wear the labels "sick" and "disabled" in America. Because you automatically get two more labels: "vulnerable" and "impoverished." How individuals preyed on me, once I made the tumble from privileged to discarded, shocked me more than the systematic abuse of government agencies and profit-driven insurance companies. But with the kindness of friends and strangers and creative medical professionals...and my own determination never to give up...somehow I made it through.
And then there is this rich vein of blessings: I learned to be strong in ways I never could have dreamed. Learned to be focused. Determined. Disciplined. And above all, compassionate. Deeply, deeply compassionate.
Nothing comes easily to me anymore. My energy is still low. I will most likely be wrangling the CFS beast for the rest of my life. But I control it; it does not control me. CFS is something I have; it is not who I am. I live independently; I work as much as I can. I had to rebuild my tolerance for exercise in minute doses, but I'm now an official gym rat who works out like a fiend. It was an epic battle that took years, but I shed the weight.
The downside of having to fight so hard to survive? My life has been, of necessity, very focused on "me, me, me." This makes me uncomfortable, because I'm not a self-centered person. But all my energy has HAD to go into my recovery. Over the last several years, I've been able to direct some energy towards building a modest, part-time career. I'm lucky that although CFS damaged my brain, enough working neurons and synapses seem to fire most days. I'm also lucky that writing is both my passion, and a job I can mold around my quirky levels of energy and concentration.
So as I celebrate, I set myself two challenges. In the darkest hours of the darkest days, I never lost hope that I would get better. Truly. I never lost hope. Because I knew so many CFS patients suffered far worse than I did: they had no one to help them, no one to believe them, and many of them didn't even understand what they had. I knew I had a purpose in surviving: I had to get well enough to help others.
I stumbled across this quote recently at the beginning of Sick Girl, Amy Silverstein's powerful memoir of having a heart transplant at 25. She has struggled for 20 years now with the grueling consequences.
A man who becomes conscious of the responsibility he bears...to an unfinished work will never be able to throw away his life. He knows the "why" for his existence and will be able to bear almost any "how."
--Viktor Frankl, Man's Search for Meaning.
I've always known the "why." It was hard to bear many of the "hows." Terribly hard.
So Challenge One is to do, finally, what many who know me and know my writing, IRL, have asked me to do: Tell my story. The whole story. Not for "me, me, me." But for those who don't have a voice. I have survived to raise compasssion and awareness and understanding for them. So that they might have some of the blessings that I have had.
Challenge Two: Overcome the terrible loneliness and isolation I feel after 20 years' intense focus on getting well. To find a way to venture out into the world more. I don't know how to do this, given the nature of my job and the continuing limitations of my energy. I know that survival is an incredible achievement. I know that the internal qualities I've developed along the way have made me amazingly strong.
So why do I still fear that a sense of stigma attaches itself to how I came to be who I am today? That I will be rejected when my labels are exposed? By men, by potential mates, most of all? I guess after 20 years, courage falters. Plus, there are cloistered teenage nuns who have more dating experience than I do at this point. Yikes! Obstacles keep cropping up, as I continue to discover just when the pale light of a "happily ever after" shimmers briefly in the distance. God sure has a twisted sense of humor.
To my beautiful fellow Kossacks: Thank you for reading this way-too-long diary. The way you've inspired me and embraced me these past 18 months...Who else could I celebrate this day with? This community has come to mean more to me that I can possibly express. You've been here for me. Now, let me be here for you. [Big h/t to JVolvo for teaching me to embed YouTubes!]
And because I HEART you so damn much, I just had to make you a mix tape, 2009-style. [Big h/t to SuperBowlXX for turning me on to my new fave website, GrooveShark, with his diary teaching this techno-saur how to embed a GrooveShark mix!] The songs here are a little on the mournful side, but reflect my current meditative-rocker-girl mood. Enjoy! World Ain’t Right, by Hurt; Now Comes the Night, by Rob Thomas, Scars in the Making, by Fuel, and Pain Lies On the Riverside, by Live.
Oh, and...I love you guys!!!
UPDATE: You guys ROCK! I'm just amazed by all your incredible comments, and I'm having a hard time keeping up with reading them all, much less responding thoughtfully. I'm trying! But know that your insights and your willingness to share your own stories means so much to me. YOU inspire me.