QUEST Volume 12, Number 3, MAY/JUNE 2005

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.aspx) is a sampling of answers to the fundamental question: “Who am I really?”

---

News Flash: I'm Still Human

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.

Jaded As I ponder the harsh realities of life; I stop and wonder. If I could walk, run or dance, would I have a life-long romance? Or am I destined to sit alone and cry? What does the future hold? All the time I ask why? I feel so jaded, green with envy for all the things I can’t do. When I should be thanking God for letting me do the things I can. The reality is: I am a woman. I cannot stand; but I can feel and make love to a man. I have the power; I have the key, to unlock the doors that shelter me. Dana Spring Wilson, 35, Murfreesboro, Tenn., Friedreich’s ataxia

---

Of Priceless Worth It’s easy to have a poor self-image with the way oculopharyngeal muscular dystrophy has distorted my face. I can’t eat politely without slobbering, walk, smile or speak clearly. I’m thankful for the love and encouragement of friends, family and a loving husband of 35 years, Glenn. They aren’t embarrassed to take me out in public, where I’m well dressed with every hair in place and makeup on. I have a sense of humor and don’t take myself too seriously. It’s fun to brag that my face will never have a wrinkle (you need working muscles to have wrinkles). Children may stare and point but enjoy a ride on my wheelchair. When I do circles in my wheelchair, I describe myself as a “dizzy blonde.” The most important way I maintain a positive self-image and sense of self-worth is to remember how God feels about me. The Bible tells me I’m His creation and my worth is priceless. How can I think anything less? I wish I could smile to show how happy and at peace I am in knowing this. Sandy Ferguson, 59, Baton Rouge, La., oculopharyngeal muscular dystrophy

---

I Don't Look in the Mirror

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

---

Living in the Aha Moment Having been born with a muscle disease and a cleft palate, I often felt as a child that society perceived me as something less than a whole person. Fortunately, my parents encouraged me to lead a normal life (go to college, work, live independently, etc.), but at times I wondered whether I was really a complete, worthy person. At age 33 I had to have an ileostomy (complete removal of my colon, requiring me to wear a pouch to collect my feces). Several hours after surgery, as I looked at my stoma and pouch, I suddenly realized that for the rest of my life, there would be people who would think of me as a “freak.” Yet, I was exactly the same person I was just hours before: neither better nor worse, neither an inspiration nor a person to be pitied. This core realization was a turning point in my life. There still are moments when I question my body image and sense of self, but they are brief as I recall that “aha” moment. In 2004, I had a total mastectomy due to recurrent breast cancer (with no reconstruction, for medical reasons). Thanks to an excellent surgeon, support from others and my own knowledge that, once again, I’m the same person as I was before surgery, I’ve done exceptionally well both physically and emotionally. Carolyn Bush, 60, Dallas, mitochondrial myopathy

---

Matchless My disability ruled me, blurring my vision, presenting my consciousness with a skewed self-image. I was ugly. A horrible person. Abnormal, when all I wanted to be was normal. I limped… everyone saw me. People degraded me. Said, “You must think you’re so great, shaking your butt like that.” Popular people don’t get made fun of. Who wants a crippled person? Nobody will ever go out with me. Two shameful years ago that’s how I thought. I wanted to be the stereotype. I was popular before I moved, before my disease really sank in. I loved it. I tried my hardest to regain popularity, to be like them, and when I finally ran myself straight into soggy tears, it hit me. What were they worth? I wanted to be unique. I realized they’re conformists; what do they matter? They all will end with the same fate, not worth their power. Boyfriends? Experience showed I didn’t need them. I explored different music, clothes, friends, and from my previous shards, I formed a unique me. I focus on my matchlessness. Being unordinary makes me so proud… it’s like the muscular dystrophy disappeared. Krista Fincke, 14, Tarpon Springs, Fla., manifesting carrier of Duchenne muscular dystrophy

---

007

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

---

Secret Self

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

 

 

 

 

---

In Search of Balance What a heartfelt subject! People with MD or any challenging disease are reminded daily of self-image. I often have a mental picture of being on a high wire with a balancing pole, like the man at the circus. Trying to keep your balance is the trick. First, accept a compliment, and take it genuinely. I’ve received some of the nicest compliments I’ve ever had since my diagnosis. In the beginning I questioned people’s sincerity. Then I realized I was hearing things I’d never heard. So I decided to use the kind words of others as therapy! Second (if you’re able), getting up and getting dressed every day (makeup, hair, clothes) has been a tremendous help to me. It takes a lot longer and I dread every minute of it! Nevertheless, as a woman it has helped me face the day with more confidence. Marlean Klaymeier-Strickland, 39, Lynn Haven, Fla., congenital myopathy

---

Inspiration for Self

no hands to paint the pictures
wrap the packages
prepare the repasts
placate the pained

no hands have I
no arms
no legs

but voice
not the breathtaking soloist’s voice
but a lilting, living voice
have I

somehow the words
will tell my vision
show my love

the words
my legs
and arms
and hands
and fingers
connecting me to others
so my spirit
does not die

Deshae E. Lott, Ph.D., 34, Bossier City, La., limb-girdle muscular dystrophy

---

There's More

Additional commentary, art and poetry from Quest readers about self-image can be found at Quest Extra on MDA's Web site, www.mda.org/publications/Quest/extra/qe12_3_selfimage.aspx.