Tuesday, September 11, 2012

The Medical Mystery Tour

The Band Back Together folks published my story about finally getting a diagnosis, after living with an odd anatomy for 36 years and having no answers from any doctors about why my mother, who was healthy and young and took no teratogenic drugs, found herself alone in a hospital bed in 1976 with nothing but the hurried, awful words, "There's a problem."

They'd taken me from her immediately after birth. They left her alone, panicked, for fifteen or twenty minutes. When I imagine those minutes now that I'm a mother, my stomach and throat fill with ice. When they finally returned me to her, she melted with relief. She looked at me, and said that to her I looked like a pink doll. Her little doll had an oddly shaped right arm. That was all. She told me she had worried I had a heart problem or something much more serious.My mom laughed: "Is that all?" My musician Dad shrugged, thinking, "Well, she won't play trumpet. Hmmm. How will she paint her fingernails when she's a teenager? Will it be hard to teach her to tie her shoes?" And then they went on to their new lives as parents.

They were absolutely amazing with this, my parents. They never treated my arm as a big deal. It must have been frightening at times- I would be knotted with anxiety if my little Molly had to have surgery, and I had two extensive operations before I was three. My surgery was stunning- my surgeons were artists. They pinned and remade my bones to craft a pincher hand with tendons and muscles donated by my leg. My hand is so functional it's remarkable.

They wondered, then I grew up and wondered, WHY? and no one could offer any guesses at a cause. By the time I stumbled into a diagnosis, I'd also dealt with asthma, doubled reproductive organs, an extra kidney, a recurring cornea tear, and the demonic scoliosis that's led to incredible chronic pain. I was sure they were connected, and chance brought me answers.

I've been reading the tag at Band Back Together they named Medial Mystery Tour. (I so very much want to have thought of that.) My frustration at the unknown was an existential thing. It was just a piece of missing information that vexed me. The neurologists had already been managing my symptoms, the many operations had given me a hand, lots of great sex and a daughter, and the ability to sit up long enough to write and draw. My mystery was driven by curiosity.

My fellow mysteries, including my dear friend and chronic pain "sponsor" are unable to get relief or healing because of their mysteries. Again, I'm overwhelmed with how blessed I am. Head over to BBT and show some support to a family of bloggers in their own medical messes, and to the community as a whole for being  supportive and empowering in a badass, uncensored way.

My other tribes- my family and friends and bleaders have overwhelmed me with support- the comments here keep bringing tears to my eyes and warmth to my heart. One private message moved me so much I asked a high school friend if I could repost it here.

Amanda wrote:
I just read the story you posted...and I had forgotten all about any physical abnormalities you may have. When I friended you on fb, I just remembered you always smiling, laughing, your beautiful face, and your kind words. Please don't take offense to the fact that I still had not paid attention to anything other than your cute pictures, your status, or some of your posts. But I do want to say that I have noticed that you have it more together than 98% of everyone else on here lol! I am glad you got your answer.
 (Her LOL made me LOL because "having it together" is the last way I'd describe myself.)

A Facebook friend whom I've met through her articles about the Charleston, WV the art world has asked if she could do a story about this. We're going to meet up later this week to chat and brainstorm. I'm so thrilled that so many of you get it. I thought the huge scope of a single word was important to me and my Dad and my Aunt/Mama, but so many of my circles understood.

Winter Ross, a marvelous artist, posted this:
Yes. The idea that a word, a label suddenly opens a door of self knowledge is interesting. When my mom began forgetting the names of her beloved trees I tried to convince her they exist just the same without the label. But somehow, without the Word, something is lost in our perception.

That's the thing with the Medical Mystery Tour, and BBT. We are not alone.

You're not alone. If you're a #spoonie with a hard time right now, or always, there is a big crazy uplifting bunch of internet rockstars to cheer you on or to just say this:

I know.

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