When I started this blog nobody read it. I wrote for four or five months without giving the link to a single soul. Just publishing it alone was an outrageously ambitious endeavor for a girl as private as I. The thought of anybody actually reading my inner agony sitting here on the world wide web was utterly mortifying. Then I almost died, and the treatment to cure my disease consisted of legalized meth, AKA high-dose Prednisone. So high as a crack-head I set out to let anyone who was interested know just how horrible Fibromyalgia was, a disease I suffered from for the previous five years and was struggling to rebuild my life around. Woo hoo, was I high on the fellowship of social media! The feedback was incredible, and planted an ember of passion in my soul to do something about the horrible reality far too many Fibromyalgia patients endure. By the time I was coming off the dragon-drug six months later people were reading. Clearly I started something, but exactly what I still don't understand. It didn't really matter, however, seeing as the messiest phase of my last ten years was just about to begin.
I had no idea how much damage my brain sustained. Once again looking like a healthy 34 year-old fooled my doctors into believing I survived two fatal strokes with hardly a scratch. Nor did I realize I was on so many medications I literally couldn't see straight. Day after day I got a little better and a little worse. What a devil's dance we tangoed into the starry night, my elusive friends health, sanity and me! Four years later I know I won, but at no point in my journey was that a guarantee. All the while I blogged, or didn't. I engaged in intense levels of personal entanglement with this disease and its online community. My keyboard warrior roared to life and nobody could shut her up! Until a member of my own family began cyber-stalking me, and twisting my words to discredit me. People were still reading, but I no longer knew who they were. All I knew was a fair amount of Fibromyalgia patients hated me for not representing their experience accurately. Eventually all the harassment became so burdensome the flesh and blood of my words began conforming to avoid controversy. The hatred, outrage and anger in my heart swelled, but I didn't have anywhere to put it. So I turned it on myself.
Despite my stale and tired words people are still reading. Is saying thank you a big enough gesture, knowing I wouldn't have kept going if that hit counter stopped spinning? My comfort with revealing myself certainly reached its peak during my steroid days. Since then the panic in my heart surges a little more each time I think of how much of myself I left sloppily laying around this place called cyberspace. Once again another crucible envelops me. I simply cannot move forward in my life and continue to spew safety. The facade is pointless. Fibromyalgia is raw, awful, fucked up and merciless. While caught in its clutches I have done awful things and behaved in absurd ways. Recognizing that reality doesn't mean there isn't hope, a better tomorrow or a way to enjoy living again. If I'm going to continue to write this blog I must embrace my heartache, let it go, and speak the words my heart recognizes as truth. Those words are far from safe.
Thanks for joining,
Leah
No comments:
Post a Comment