Self-Image and Disability (Extra)

A smiling Serena Shaffer, diagnosed with spinal muscular atrophy, alongside the self-potrait she created
by Brinda Carter, Katrina Gossett and others on May 1, 2005 - 10:12am

Below is a selection of contributions submitted in response to the Quest story, Self-Image and Disability. Each of the opinions expressed below are from people served by MDA.

Be sure to check out the MDA Art Collection for more examples of self-expression by artists with neuromuscular disease.


My life!

I am 50 years old and have been handicapped most of my adult life. At first, only I knew I had a problem. It took the doctors quite awhile to find it. I could never run fast and I failed my first breathing test at 19. In fact my classmates laughed at me because I always finshed last. At the time I was skinny, but now as my health has worsened, I am quite obese. After many test it turns out I have limb-girdle muscular dystrophy and, believe it or not, as frightened as I was, I was glad to have a name for my illness.

Since then I have developed COPD and am on oxygen 24 hours a day. I also have congestive heart failure, both brought on by the muscular dystrophy. I am also wheelchair bound. Now it seems that people talk down to me because of my handicap. It's funny in a way that they think my mind quit working because my body has problems.

I love doing crafts, drawing and writing poems. My family and my Savior are what makes life worth living. They keep me going. I really wish everyone could look past my health and get to know me. Hey, I think I'm great!

Living my life with muscular dystrophy

My life is not easy,
It's full of pain.
I write these poems
So I can stay sane.

I struggle to walk.
I struggle to breathe.
Even my heart it
Struggles to beat.

My life isn't easy
And that is a fact.
But I can go on because
Jesus has my back.

So even if your life
Seems all out of sorts.
Keep your eyes on the Savior
And He'll keep you on course.

Brinda Carter, 50, limb-girdle muscular dystrophy

A player on life's stage

Katrina Gossett

I'm an actress. I use a wheelchair. This is a problem for some people; they don't expect a person like me to roll on stage.

As an actress, many times my self-image has been put to the test. The first time, I was only 5 years old.

I was asked by the director of a children's theater group to introduce the show rather than play a role. I didn't understand then that this would be just the first curb I'd encounter, due to expectations others have in theater. High school brought other hurdles, like automatic exclusion from lead parts and show choir, all of which were reported to me matter-of-factly. College brings similar barriers.

I’ve learned that it's my job to sustain my self-image. Acting is a thick-skinned profession; as a wheelchair user, I have to be a rhinoceros. I continue acting because I love the stage. I remember that acting is portraying life and those with wheelchairs take part in life. I use acting to let the world see me the way I see myself: able and ready.

Katrina Gossett, 19, Notre Dame, Ind., spinal muscular atrophy type 1

Suzette Ewer
Suzette Ewer

Gifted

God gives each person a special gift to be used for the benefit of others. It’s important to focus on abilities rather than physical challenges.

As a piano and voice teacher, I’m active and have many responsibilities.

The work of being a successful entrepreneur keeps me focused on the needs of others. Music is also enjoyable and therapeutic for me.

Due to complications caused by the CMT, I regularly have excruciating foot pain.

Participating in singing helps relieve depression, builds endurance and gives me something to think about other than the physical suffering.

Suzette Ewer, Charcot-Marie-Tooth disease

In transition

My self-image has always been an issue. Teasing caused feelings of ugliness and shame. As I grew older I hated to walk in front of others. I would never tell others how hard it was for me to keep up with them. I was in a state of denial.

But to thrive in life as my disease progresses, I must consciously choose to adjust — to leg braces, a cane, a wheelchair. It takes perseverance. I tend to think of myself as I was in the past, not as I am now. Sometimes it's emotionally very hard. I let myself cry and move on.

I’ve seen a therapist and been blessed with a boyfriend who has taught me to not be ashamed, and to be myself – leg braces, cane, occasional wheelchairs and all. When I read Quest and see what someone with SMA has to go through it really puts things in perspective for me.

Serena Shaffer, spinal muscular atrophy (pictured above at the top of this story)

Stubborn and determined

Dorris Norris
Doris Norris

Since my diagnosis in 1996, I see myself as a more determined person. I’m determined to do everything I can to slow down the progression of this disease, and to live my life as a normally as possible.

It’s taken a strong will and stubborn determination to follow my doctor’s recommendation of aquatic exercise, but I’ve done it faithfully almost every day for over seven years.

I’ve often had to make myself get dressed and go to the local wellness center, but it’s paid off.

I’m still walking (with a rollator walker), doing light housework, and puttering in my hobby greenhouse. I maintain my sense of self by taking pride in my appearance, keeping a positive attitude, counting my blessings, and keeping a smile on my face (no matter how bad I may feel).

Dorris Norris

Thankful for me

Julie Isola
Julie Isola

I’m reminded all the time that I’m physically challenged.

People stare at me but their comments don’t bother me anymore. Their ignorance is pitiful and I find myself praying that they will soon be educated.

I try so hard to maintain a positive body image and sense of self. I don’t want to be looked at as different. My mind works just fine; it’s my body that lacks in its proper functions.

Appearance is very important to my sense of self, both because I’m disabled and because I’m a woman regardless of my illness.

When I think of myself, I think of someone who is tenacious and strong-willed.

I’m thankful for being who I am, and if I didn’t have my illness I know I wouldn’t be the same individual.

Julie Isola

Attitude is reality

I have found my smile and my attitude to be the best defense to the way I see myself.

Someone once told me they think people have a "nasty" attitude toward physically challenged people. I’ve never found this to be the case. It’s been my experience, whether I’m using a cane, walker or wheelchair, that if I greet people with a smile I get one back.

Of course there are always those people in the world that don’t smile at all no matter how friendly you are.

Recently a friend said it was too bad I had to give in to using a walker full time. I said, "Oh, I just look at it as another tool to use so I can go on living life." Yup, attitude — that’s where life is really lived.

Rosemary Mills, 59, Benson, Minn., Charcot-Marie-Tooth disease

Happy on 'the fringe'

by Allyson DuPont

I’ve been physically different since before I can remember, and deep down I’ve always been comfortable with that aspect of me (in fact my difference in other people’s eyes was very much normal for me).

But just because I was comfortable with myself didn’t mean everybody else was. In middle school most of my friends abandoned me because my individuality hurt their reputation.

Allyson DuPont
Allyson DuPont Cranston

I followed popular trends and did anything — including trying to be someone I wasn’t — to fit in.

For example, I decided that bringing a lunch to school wasn’t "cool," and ate only cafeteria food. Unfortunately, the high fat content went straight to my hips and in a year I went from a size 6 to a size 10, while remaining less than 5e feet tall.

That same year I caught an intestinal flu. My unhealthy eating and sudden weight gain created complications and I found myself in the hospital for nearly three weeks.

Then I was done! I decided I would eat, dress and act how I wanted. I poured myself into art and met a social group I’ve fondly named The Fringe, which is an adhesion of social misfits, a unification of teens who can’t bring themselves to sacrifice the true person they like so much.

My new friends liked me for the same uniqueness that deterred my old friends. I found a place where I was who I was and that was the end of it.

Allyson DuPont Cranston, R.I., spinal muscular atrophy

The problem with being pink

I have a problem! I’m the color pink.
Now, sure it would be fine
If I was a pretty-in-pink,
Or a blushing pink,
At this point,
I’d even settle for a fluorescent flamingo pink.

But NO!
Just as luck would have it…
I’m a PAISLEY-PANSY-PINK!

Now, honestly,
Without a laugh,
A sigh,
And please,
Don’t give me one of those grinning winks,
But, look at me and tell me what you think.

Mary Gallo
Mary Gallo

Yea!
That’s just what I think.
Paisley-Pansy-Pink stinks!

I started thoroughly,
Thinking it through,
Even tinkering with what to do,
Wishing I, too,
Could be blue like you.
When all of a sudden,
With a tap,
A snap,
And a clue,
I knew just what to do:

I’ll hold my breath till I turn bright blue!

No! No! No!
That didn’t do!
I drew a big breath and then I blew.
I’m still Paisley-Pansy-Pink,
And this color simply won’t unglue.

Now, I don’t want to misconstrue
Or raise a heap of a hullabaloo,
But there is nothing I wouldn’t pursue
Or hitherto, just to be the color blue.

And while we’re at it, why can’t I be green?
There must be a cure, some kinda vaccine?
That can turn my Paisley-Pansy-Pink routine,
Into a gobble-de-gook, sheen,
Avocado green.

Oh! Why can’t I be orange like a cat?

Or black like a bat?

Why can’t I be blue or green?

I’d surely settle for a shade in between.

I’m tired of Paisley-Pansy-Pink!

You see…
Paisley-Pansy-Pink stinks!
And that’s the problem with being pink!

Mary Gallo, 34, Lindenhurst, N.Y., congenital muscular dystrophy

Staying free

Independence is the key to my positive self-image. It’s only by trying to do things that I realize what I can or cannot do.

Kristal Hardin
Kristal Hardin

I know my independence at times frustrates others, but it’s my body, and my way of doing things gets me through. I do find my weakness disheartening at times.

There are many situations that require a sense of humor and not taking myself too seriously to stay upbeat. I save my tears for nighttime and then get up and go again in the morning.

Writing or journaling has helped me immensely. I express my personal frustrations, give in to my sadness, or boost my morale with my accomplishments.

With the disease’s progression, I’ve had to ask for help more often. I’ve found family, friends and even strangers are eager to be of assistance, since I don’t ask too often. I express my appreciation to these helpful souls, but it’s still up to me to maintain my independence and positive outlook.

Kristal Hardin, 47, Fort Myers, Fla., limb-girdle muscular dystrophy

A sense of victory

On my first day of college, my stomach churned with anxiety. In addition to the normal worries, I wondered: Will I trip? Will students tease me for walking funny?

I finally found my first class, at the top of a long, looming staircase. My heart sank as I once again felt Charcot-Marie-Tooth devouring my self-confidence.

I’ve been wearing leg braces since freshman year in high school. At first, I resented the hideous chunks of plastic. I also hated my stick legs attached to gnarled feet decorated with jagged scars from surgeries. I could throw the braces under my bed but I couldn’t separate myself from my own legs.

CMT was consuming my muscles and my pride.

Landon Moore
Landon Moore

To distract myself, I immersed myself in my mental abilities. My legs might shake and falter but my mind never skipped a beat.

But now, facing this long staircase, I felt discouraged and heartbroken. I had succeeded in the mental requirements for higher education only to fail the physical ones. Then I thought of my mom, who also has CMT. She inspired me to be courageous and determined to succeed. I took a deep breath, adjusted my backpack and took the first step.

Since conquering those stairs, I've also overcome my embarrassment of taking the elevator, using a ramp and sitting in the front row of the bleachers. I show my braces to those who wonder why I walk a little differently. College has taught me to accept my differences and run with my mind instead of my legs.

This disease will never take my sense of victory. My muscles may be weakened, but learning to live without them only strengthens my spirit.

Landon Moore, 20, Alpine, Texas, Charcot-Marie-Tooth disease

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