In November, a small note appeared in Quest and on the MDA Web site: “How does your disability affect the way you see yourself? How do you maintain a positive body image and sense of self?” Readers were invited to send stories, advice and artistic expressions.

Responses poured in from across the country, from people of all ages (primarily female), with a variety of muscle diseases and levels of disability. In essays, poems and artwork, they spoke of despair, humor, acceptance, struggle, revelation, bitterness and personal growth.

On the following pages (and online at Quest Extra, www.mda.org/publications/Quest/extra/qe12_3_selfimage.html) is a sampling of answers to the fundamental question: “Who am I really?”

My disability has changed the way I see myself year to year. When I was first diagnosed, I didn’t actually think it was going to get worse. I didn’t think about it. I was young, free and had no worries.

As time wore on, my walking became increasingly difficult; I became dependent on my wheelchair. Goodbye to people staring at my walking and hello to people ignoring me or giving me a half smile. News Flash! Even though I’m sitting, I’m human. I have feelings, ideas and dreams too.

When I’m feeling blue, I usually pick up my pen and put what I feel into words. Here’s an example.

Five years ago I started taking high doses of the steroid prednisone and my face and body basically exploded. I wasn’t really a lightweight before, but I was at least average-looking. I swelled up so horribly that my nostrils and eyes were almost swollen shut. I stopped looking in the mirror.

I have managed and adapted as best one could to this disabling illness, but I haven’t been able to deal with my appearance. I never smile anymore, because years of prednisone have rotted my teeth out. It took me four years to work up the courage to go into a beauty salon. I only managed this because I saw Jerry Lewis on national television with his face and body bloated by steroids.

I’m pleased to say that recently I’ve been able to cut down significantly on prednisone and have the pleasure of a good bit of functionality returned to me. Personally I think I am quite lovely on the inside. But I still cannot look in the mirror. Let’s just say the self-image thing has taken a considerable beating.

Johanna Jimenez, 43, Plant City, Fla., polymyositis

What the world thinks doesn’t move me too much because I have to stay grounded in myself. Numerous times, everyone told me to do this and I ended up doing that because I understood my strengths and weaknesses better than they did.

Our society has many negative attitudes and beliefs about disability. If you buy into that, then your body image, your self-esteem, become negative. But if you don’t buy into it and realize it’s just the other person’s perception, then it doesn’t have to be your own. You have a healthier understanding and are freer as a person to develop yourself.

As a male, my disability most strongly affected my self-image when I hit puberty and got really interested in girls. I thought, “Who’s going to like me in a wheelchair?” So I asked some girls out and got some rejections. But then some girls said, “yeah.” If I’d stopped at the rejection stage, I wouldn’t have gotten very far.

My wife once asked me, “When you dream, what do you see?” In my dreams I’m 007. I’m usually not in a wheelchair, even though I’ve been in a wheelchair my whole life. Which is really interesting when you think about it.

We cannot give in to the idea that we are weak, incapable, less than. We have to compensate for our disabilities where we can, and recognize we also are strong, talented and have many gifts.

Jerry Ferro, 54, Casselberry, Fla., spinal muscular atrophy type 2

When people look at me, what do they see? A body atrophied by 10 years of ALS, paralyzed below the neck with only gravity-encouraged movement above?

Are they baffled by the mouth that always seems to be smiling at some private joke, or repulsed by the drool that unexpectedly dribbles down the chin? Do they take my garbled speech as an indication of some mental disability, or assume that my thoughts and emotions are as frozen as my body?

When people look at me, do they look in my eyes? If they did, they would learn my secret. I’m a thinking, feeling, opinionated human being. In contrast to my apparent weakness, I’m a person of great strength, secure in the faith that there is a purpose to my life. People who discount my ability to know my own mind sometimes learn to their chagrin that I know what I want. That is my favorite part of the secret!

"Headturner" by Erin Brady Worsham

Those who would see only my outward inadequacies don’t know the dreams I conjure in my mind’s eye. Dreams, in words and images, which I’m able through the wonders of technology to put down on paper as an artist and writer. I’m a productive, creative individual.

The rude indifference of people who stare will always hurt, but they can’t be blamed for believing only their eyes. They must be taught to see the secret.

Erin Brady Worsham, 46, Nashville, Tenn., amyotrophic lateral sclerosis