Wednesday, September 26, 2012

The Scathing Memory

While organizing a box of old paperwork I ran across a fat stack of medical records. The experience was so monumental it took me two days to even have a recognizable feeling about the whole thing. At the time all I could do was stare at what was before me in awe. I remembered making those complex charts of all my supplements, lists of what to take and how often and if I should take it with food or on an empty stomach or not within three hours of another supplement with instructions just as complicated. There was a folder to flip through with tabs for the months and within each month years of charts and graphs and descriptive script chronicling every ping, pang and stab of pain I felt. Each migraine, day with an irritable stomach, night I was up till 3AM because my brain just would not shut off. Paragraph after paragraph instructing myself to cheer up and quit pouting, stiffen my quivering upper lip and believe in the power of a positive mental attitude, when all I wanted to do was find a quiet dark corner and curl up into a ball and die. And what I spent! Oh my God I could have saved a failing first-world nation on what I spent to get "managed." Well practically.

Staring at this paperwork that was the remnants of the, pardon my profanity, fucking nightmare CFS/ME and Fibromyalgia inflicted on my life, I felt nothing. Numb. I remembered all of it, well most of it, but couldn't access what it felt like. Not the complexity of desperation and denial and anger and sheer panic I felt as everything bottomed out from underneath me. Like poor Alice falling down the looking glass, racing past the smiling faces of friends no more and the career I was supposed to have, babies I should have birthed and life I thought I would live. I stared at this all in awe but couldn't feel the gaping hole of ache in my heart. It took me two whole days to do that, remember what it felt like to walk that dark, lonely and painful road. Truly reflect on what a complete horror it was to get those doctors notes so critical to getting those state disability checks that were the only way I could pick myself up and start to get better. 

It took two whole days, and when those feelings hit they hit hard. Knocked me on my ass, the power of the anger this whole experience created. I thought I'd dealt with it but life is like nothing if not an onion. Peel back one layer and there is always another underneath waiting to make you cry. I finally saw the whole thing with the crystal clear 20/20 of hindsight. I was robbed! Of my life, my future, my opportunity. No that does not mean my life is still not worthwhile, or maybe even better off in the long run. But recognizing the past for what it is doesn't invalidate my present, either. Life seems to be gearing me up for something, because sure as one domino topples another I am being smacked repetitively in the face with acute and scathing memories of the worst of this illness. Flashes of pure utter living hell and how impossibly hard it was to drag myself out of the gutter. It's pissing me off something fierce and reminding me of the conviction I stood in when I decided to make my life about Fibromyalgia awareness. Getting sick with a non-terminal illness shouldn't annihilate this many patient's lives, it just shouldn't. And if it's the last thing I do on this torturous green earth I am going to do something about it.

Thanks for joining,


  1. Hi Leah,

    I just wrote this. It might speak to you?

  2. Make me think of Gloria Steinem's quote, "The truth will set you free. But first it will piss you off!"

    Thank you for sharing yourself and your journey!

    Mary Ellen