Sunday, August 24, 2003

Alive & well

At times, being disabled can be godsend

There are certain principles, commandments if you will, that make living with a disability just, well, living. You have to find adaptations, work-arounds that allow you to do the things you want to do, albeit with new techniques.

And, once familiar with those new techniques and work-arounds, you find that the way to get the most joy out of living every day is to put that disability on the back burner and move on.

Not such an obstacle

Those tenets sprang from years of training, advocacy, research, friendships, countless interviews and, most importantly, personal experience.

The disability I've known since childhood, blindness, has rarely felt like a serious obstacle to me. It was long ago that I assimilated the necessary adaptations, alternate techniques for doing things.

Can't see where you dropped a pencil? Find it with your foot. Can't see when the cookies are done? Use your nose.

But there are all kinds of disabilities, and my current experience with a new kind reminds me to cling tenaciously to those two basic beliefs.

On June 11, I received the phone call that launches so many novels, films, and TV dramas. The pain and swelling in my leg, self-diagnosed to be a prolonged ski injury, was actually a large, very large, leiomyosarcoma, malignant tumor of the smooth muscle.

The news sucked the air out of me, but wasn't a complete surprise. This and other cancers are known to come packaged with the same disease that took my vision in childhood, so I've always known that someday another bomb might fall.

Mine has been a summer of tests and radiation treatments and pending surgery. But that's not what this column is about. It has more to do with the gratifying reinforcement of those two guiding principles of mine.

Bearing the first one in mind has provided a sort of distraction from the pain. Leg won't bend properly? I find I can use my hands to put it in its place. Trouble getting in and out of cars led me, for the first time, to realize how useful those little support handles just inside the door can be.

Grab bars, ramps, and elevators have all taken on a new significance. The arms I have been promising to build up with weights for years are having a new demand placed upon them as I find what pain it spares the legs when arms and hands can support my body weight.

It's affirming to have this fresh perspective on the notion that work-arounds are the solution to disability, but there has been a payoff I hadn't expected, too: The panic that words like "cancer" and "tumor" and "radiation" can ignite has been somewhat held at bay, upstaged by the more interesting here and now puzzles of how to accomplish a familiar task with some unfamiliar tactics.

As far as that second principle goes - putting disability in the background - well, I'm not entirely there with the new challenge, but trying to maintain the attitude of just fitting this difficulty into my otherwise blessed life is a tremendous stress reducer.

Focus on richness

Sure, there are episodes of fear and fatigue and too much focus on the tough stuff, but that's how every disabling condition operates - even the ones a person has had for 30 or 40 years. When you get it just right, are lucky enough to focus entirely on the richness of life, you forget that it's there.

Still, sometimes you have to give yourself permission to muddle through the learning curve.

Contact Debra Kendrick by phone: 673-4474; fax: 321-6430; e-mail:

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