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When I was first diagnosed with multiple sclerosis, I met a woman, named Elaine, I think, who told me the key was to never give up your mobility.

As she looked up at me from her wheelchair, I was mostly consumed by the desire to run, to pretend she was talking to someone else, and to continue to deny my multiple sclerosis rather than to listen to this old woman’s advice.

She was in her mid-60s, diagnosed with MS in her mid-30s as I had been. At the time, she was a lawyer for high-powered firm in Chicago. She had the best MS treatments that money could buy and yet she was in a wheelchair within five years.

I stopped listening for a moment, thinking that scared me even more than the concept that MS could kill me. It was, in many ways, my worst nightmare. The thought of the disease crippling me, taking away my freedom, I thought that was my biggest fear. Turns out, I was wrong about that too.

Though I depend on other people more than I like to admit, I pretend to be fiercely independent and the thought of needing someone to help me in and out of bed, to the bathroom, or into and out of the shower was terrifying. Later, I discovered that one of the major effects of MS is that it literally shrinks the brain, slowing brain function.

Okay, now there is something that terrifies me more than losing my body. Losing my mind would be so much worse. When I heard that, I immediately recalled “Flowers for Algernon” and how the title character suffered, knowing the joys of being smart and then returning to his less intelligent state. Before he was smart, Algernon accepted life as it was. After he had been smart and lost it, he remembered what it was like to be intelligent and craved being there again.

Would I someday have those same feelings, knowing that there were things I couldn’t remember that I once knew?

When I stopped my rampant fear long enough to listen again to Elaine, she was saying something about giving up her mobility and that I should never do it. Ha! What does she know? Oh, yeah, she’s been here, done this. Better start listening again.

It was the loss of balance that upset her first. Nothing could be worse that the stumbling, falling flat on your face for no reason at all, right? So she bought herself a nice cane, just to maintain her balance. I’ve often thought it would a nice option.

People somehow have more respect when they see that you have a cane, as though that makes the disability more real. If I am walking and stumble or trip because of the loss of balance, people laugh at me or assume I am drunk or clumsy. The cane is like an outward signal that I have a disease that affects my balance. It is strangely tempting after the 30th or 100th time you end up with bruised knees, hips and egos.

Then, one day, the cane wasn’t enough and she decided, just for one day, to allow herself to use the wheelchair. She never really walked again.

A co-worker and friend who was listening to our conversation worried that Elaine’s revelations would scare me, make it harder to accept my diagnosis and in some ways it did. I remain terrified of ending up in a wheelchair, even though I know that it only happens to roughly half the people diagnosed with MS.

More importantly, meeting Elaine gives me strength. It reminds me that literally when I give up trying to walk, I may be giving up walking forever. That gives me the strength to brush of my bruised knees and hands and keep pushing forward.

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Written by: Moonshadow68
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Words: 637