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Living with a Chronic Condition

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Friday, April 19, 2013

What We Need to Keep

By Thomas Orton

Thomas Orton

Thomas Orton is a professional novelist and freelance writer. He is author of the blog Rogue Rhythm: Parkinson’s and the Rest of Life. His novel, The Lost Glass Plates of Wilfred Eng, earned critical praise nationwide. He is also the author of Kenneth Callahan, an art book about the renowned Northwest painter. As a freelance writer, Orton has worked extensively in the medical and health care fields. He was diagnosed with Parkinson’s in 2009.

One Saturday morning a while back, my good friend Marilyn and I were talking on the phone. Marilyn had recently had a shoulder replacement and found it difficult adapting to things like putting on a jacket and brushing her teeth left-handed.

“You must be dealing with stuff like this all the time,” she said.

I told her that the stiffness and shaking from my Parkinson’s had lately been making it difficult to shave but that choking way up on the handle of the razor had made it much easier–and safer.

“That might work with my toothbrush,” Marilyn mused. She was silent for a moment, then asked, “I wonder how women with Parkinson’s –with stiff, shaky hands –how do they put on lipstick? Or eyeliner for that matter? Eyeliner could to get downright dangerous!” she added.

The question intrigued me enough to go online, after we hung up, to see if I could find an answer to her question. I found that there were precious few grooming tips for the chronically ill. Maybe people assume we have more pressing issues on our minds, like just surviving. But chronic illness shouldn’t stop anyone from enjoying his or her life and wanting more than “mere survival.” In the the normal course of things, vanities provide us with confidence and grace, two things people with chronic diseases badly need.

Focus On Faces

Disease may be harder on women exactly because it can take a toll on personal beauty. We all know that our culture expects a lot of women in terms of appearance, and when illness intrudes over the top of such demands, it’s hard to keep up.

The face seems to me to be an area of particular vulnerability. With makeup, a woman can alter the way she meets the world or, possibly, divert or even hide from its raw, hyper-critical eye. Some women couldn’t care less about eye shadow and shades of rouge. But if you suddenly had to do without such familiar, confidence-building camouflage and were saddled with a chronic condition, how much more difficult would it be stepping out your front door every morning?

I hear some women objecting, “Parkinson’s is humiliating enough. I don’t want to make it worse with crooked makeup. Or if I do manage to go out in public looking great, I could easily ruin it by stumbling or slurring my words and having people think I’m drunk. Better to forget about dolling myself up and just move on.”

There’s at least one flaw in that thinking: Parkinson’s is a disease of degrees, of inches. For the most part, it changes things gradually. So should we.

From Despair Comes Invention

Chronic disease can cut a swath through our lives as wide as the path of an Oklahoma twister. The good news is it leaves us alive. That’s also the bad news. Right from the start, it is difficult to maintain a semblance of pride and dignity.

Even so, the desperation that goes hand in hand with chronic illness can kindle inventiveness. In my early 50s, I took up jumping rope at my gym. I got pretty good and – okay – I liked showing off. When I was diagnosed with Parkinson’s Disease, I quit in a fit of self-pity. A year later, I picked up the rope again. I’d lost stamina and and timing and could barely get the rope under my feet.

I kicked myself for quitting. Then I started making my own ropes to accommodate my new shortcomings. I’m nowhere near where I was – jumping now is more like meditation than exercise. It’s a way of practicing a new kind of patience, one that I have a feeling might become useful in an uncertain future.

Every resource is worth fighting for. Clearly, you don’t want to obsess, but neither should you let go of something you love before you absolutely have to. Think it through. Talk to people who understand what power there is in the details. Most important of all, take your time. Chances are, when it’s time to give up the last of your vanities, you’ll be ready to let them go.

Posted by: WebMD Blogs at 10:51 am

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