From Where I Sit Alone With Your Disability

Sandy Shipley is a freelance writer and avid traveler who lives in Hermiston, Ore.

I can experience a feeling of aloneness any time, anywhere. Often, I know this feeling occurs because of my disability. I would describe it as a feeling of being left out, not included in life around me.

Living with a disability brings changes to your life, not only in what you can do, but in the way you feel about yourself. You may see yourself differently from the way you used to. The physical changes may make you feel embarrassed, unattractive or inferior to others. But I’ve found ways to overcome these feelings of aloneness.

During more than 20 years of living with limb-girdle muscular dystrophy, I have arrived often at the crossroads of choice. Will I be happy or sad? Will I go forward, or give up? Shall I remain active, or sit by the wayside? Some of my greatest successes in dealing with the physical and emotional effects of my disability can be summed up in the following six determinations:

Choose to use all aids

Cherish your freedom of mobility. Don’t let the embarrassment of being seen with a cane, crutches, braces or a wheelchair stop you from enjoying every opportunity that comes your way.

Accepting medical aids as your friends will open a world of activity that you may never experience without them.

Allow others to help you

Recently at a buffet restaurant, my three-wheeled scooter presented a challenge. Inside the door, I couldn’t negotiate the tight turns of the zigzagging maze to the cashier.

Seeing my predicament, other patrons began removing obstacles and clearing the way for me. Everyone became involved, and soon an opening appeared. I thanked them, followed their instructions for turning around, and skipped right past the line.

It’s true, you might become a spectacle. But enjoy it! I felt like a VIP.

Move on quickly

The feelings of aloneness are never stronger than when I’m left behind during a group activity. For instance, when we’ve had guests in our home, upon leaving, everyone moves outdoors to the car for final good-byes. Due to the stairs, I must stay behind.

It may be a small thing, but my momentary feelings of abandonment are acute. Then I remember, “Move on quickly. Don’t linger.” I offer a final wave, walk away from the door, and immediately begin the task of cleanup. The blues will vanish!

Entertain yourself

Life from a wheelchair is often full of roadblocks. Many can be overcome, others can’t. But, emotionally overcoming disappointments is often just a matter of planning ahead and looking for new opportunities.

I recall fondly a sightseeing trip with my husband, Walt, and some friends, while visiting the U.S.S. Lexington, a World War II vintage aircraft carrier, now a floating museum at Corpus Christi, Texas. Since accessibility was limited to the hangar deck, and the others would be joining the onboard tours, I knew I’d soon be alone. I immediately began planning my own entertainment.

After touring the hangar deck, my group departed on the first of several guided tours. Instantly, the familiar feelings of aloneness enveloped me. But my plan was in place; I would read in detail each exhibit we had briefly scanned.

Turning my scooter around, I poked my nose into the old ship’s galley, read personal stories of men who’d served on the carrier, and chatted with a knowledgeable U.S.S. Lexington volunteer. He expounded the ship’s history with accounts of several attacks that had damaged it, explained the functioning of the immense elevators that lifted the airplanes from one deck to the other, and showed me the massive equipment used to catapult the planes into the air.

Finally, I enjoyed a movie. When my group returned, I was amazed to learn that I had gleaned more information about the ship’s history than any of the others, and I’d had a great time doing it. I realized I never had been alone, just with different people. What a great experience!

Leave your pride at home

I can accept myself for who I am. In fact, I like to think of myself as unique. But there’s still the issue of pride. We all have it.

For example, though I usually use a scooter at restaurants, occasionally I can’t. At those times, my husband will assist me slowly inside (since I still have limited walking ability), and seat me. Upon leaving, he will wrap his arms around me and physically lift me to a standing position, until my feet are stable.

Always, I imagine the stares around us, and know that we have become that dreaded spectacle once again. As I regain my balance and readjust my clothing, I try to regain my dignity. But, often as not, the teasing starts from a neighboring table pointing out, “That’s one way to get a hug!”

And I am again reminded of how accepting people are.

Plan ahead for your own enjoyment

Accompanying my husband to town is always my pleasure, but often, the shorter stops are accomplished faster and easier if I remain in the car. To combat feelings of aloneness, I go prepared with an electronic solitaire game, a book or a knitting project. I’m never bored during an unscheduled stop. At home, my wheelchair is surrounded with pleasurable activities, as well as the computer, TV remote and telephone.

Thankfully, my experience has been that, between limited housework, fun sit-down activities, time with friends and family, a zest for living and my active imagination, there’s little time to feel alone or left out. And I am convinced that, even living with a disability, a positive outlook and an enjoyable life are well within my reach. And they’re within yours, too.