Thursday, March 21, 2013

What You See and What You Don't

Everyone you meet has hidden depths. Some have more challenges than you will ever guess. They disguise them. They ignore them. They live with them.

I'm one of those people.

There is an edge of normalcy to the way I look - conservative dress, high heels, long hair. It is actually a contrived disguise.*

When I was a kid, I was diagnosed with scoliosis. It is a curvature of the spine that effects more girls/women than men and does not have a single cause. I wore the backbrace. I was "lucky" - because it is my lower spine - what I wore looked much like a plastic corset and did not show above the collar bone. That meant, because I'm "naturally thin", a sweater and a full skirt made me look almost normal.  But I couldn't sit in chairs since the brace cut across my hips - I learned to perch on the edge of chairs. At night, I learned to sleep without moving so the brace would hurt less. It still cut scars in my back from the wear pattern. 23 hours a day/ 7 days a week / 3 years.

It wasn't enough. I was 15 and 5 ft 2 in when they said I could stop wearing the brace because my spine was perfectly aligned, and the remaining curvature was very slight - well within normal range. The doctors pronounced me done growing. They were wrong. At 19 I shot up a bit over 2 inches in less than 2 months. The damage it did couldn't be fixed with a brace, and I refused the surgery. (I take comfort that I'm not the only one to refuse the surgery.)

What does it mean to have scoliosis as an adult? Simple things that other people don't think about are harder for me - bumpy roads, the hug where you get patted on the back, picking up a box, etc. The garden I love causes me pain to tend. The nieces I adore stop being "lift-able" at 30lbs. It means when I shovel the inevitable Indiana snow, I am always careful to not be overly ambitious.  It's not optional that I go to the chiropractor once a month - it's mandatory pain management. It's also not optional that I stay in half-way decent shape; the stronger my core, the less pain I'm in.

*My disguise? It's multi-layered:
-Because my hair is shoulder-length, you don't notice my shoulders aren't even.
-Because my top is a plain color and loose, you don't notice the difference in my rib cage.
-Because my top is long and layered over a patterned skirt, you don't see the hips are uneven.
-Because it's a lined skirt, everything moves as a single piece and looks even.

Things you'd never guess looking at me:
-You don't know every breath I take hurts as the act of breathing moves my ribcage.
-You don't see that every hip-swaying step causes pain to sparkle across my spine. (The hips sway on their own, because my legs are perfectly even and the hips are not. It's amusing when people think I do it on purpose to be "attractive". I couldn't stop it if I tried.)
- You notice that I curl up in chairs like I own them - you don't realize it's because curled is the only way I can sit comfortably.
-You don't know that my standing pose with my hip cocked minimizes the look of  unevenness.
-You don't know that I fight to stay limber, in-shape and not in the predicted wheelchair.

Most days, I cope. The pain has been with me so many years it doesn't impact mood or even activities 99.9% of the time. Sometimes I think of the pain as a way of daring the edges of what is possible for me. (Usually when I'm shoveling snow!) And when I think my pain is more than I can bear, the universe always finds a way to show me how selfish that thinking is.  Last month I met a 28 year old with a titanium leg from bone cancer. First thought that ran through my head - how lucky I am. Second thought - that I'd have never guessed her challenge, and she bore it with extraordinary grace.

Take-away - You are not alone. Your challenge will change your life. But it is still YOUR life; it is what you make it.

PS - The skydiving? I worked out 1.5 hours a day for 6 months to be strong enough and still did it "against medical advice". Worth it.  I "bounced" a little better back then!

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