The “Facts” About Duchenne Muscular Dystrophy
An “outsider’s” viewpoint by Rich Clingman (June 7, 2001)

“Facts” are not “truth”. Facts are about yesterday. We do not know what tomorrow may hold. We do not know which one person—moved into action—will help find the cure.

“In 1986, the dystrophin gene—responsible for Duchenne Muscular Dystrophy—was the first gene successfully cloned for research. There is not yet any treatment or cure for this disease.” That makes me wonder.

“A boy with Duchenne is sentenced to a wheelchair for life—a life cut short by this cruel disease.” That makes me sad.

“The government spends millions to support the arts, arts your boy may never enjoy because we are spending virtually nothing to find a cure.” That makes me angry. That anger moves me to action. So I call my Congressman and Senators, and I demand they support legislation to increase funding.

As I write this article, I struggle for the words to use. I am not disabled, nor does my son have Duchenne or any other physical disability. I am an “outsider”, an outsider who has been learning about Duchenne for a little over a year, an outsider who yearns to help and not harm.

I struggle to find words that clearly convey my point without offending. Yet in the discussion about Duchenne, clear and “offensive” phrases and facts are needed—not to offend those affected by Duchenne, but to offend, to elicit emotion, to move into action those of us not directly affected—us “outsiders”.

In writing this, I do not want to seem to be saying, “Grow up, get over it,” when it comes to non-Politically Correct or offensive facts and phrases. I want to say, “Please! We ignorant ‘outsiders’ need clear facts and offensive phrases to begin to understand the impact of the disease. Please! Let us care. Let us act.”

Many object to vivid phrases such as “victims of this cruel disease,” or that boys are “sentenced” to a wheelchair. My own website lists “facts” such as “Wheelchair-bound: 10-12 years old”. There are many who are upset when the “facts” of Duchenne are used to quantify the impact of the disease. The overwhelmed parent of a newly-diagnosed boy must somehow wade through these facts and phrases and digest it all without allowing herself to see these “facts” as the “truth” for her son.

While these “facts” and phrases cannot rule your life, their use is important to begin to paint a clear picture of Duchenne for us “outsiders”. A clear picture is required to hit hard at our emotions. Those hard-hit emotions are required to gain support for additional funding. That funding is required to reach for the treatment and cure of Duchenne, and to help families already impacted by the disease.

Does the end justify the means? Not if the means harms boys and families affected by Duchenne. Otherwise, YES, when the means is needed to reach for the treatment and cure.

Over the years I have been moved by the MDA Telethons. Yes, I have sent in my small donation. And, yes, I have forgotten the boys and families until the next Telethon.

Just over a year ago (02/03/00), an ER episode included a scene with a boy who had Duchenne. As I remember it, the boy had attacked another child with a pencil. The doctor relentlessly provoked the unrepentant boy until he threw a tantrum and screamed that his mom had to brush his teeth and give him baths and was treating him “like a baby”.

That episode seriously offended many people. And that episode made me sob. And that episode pushed me to begin researching Duchenne. I had been writing a story and decided to rewrite the hero character so he was a boy with Duchenne. So I researched the “facts”. And the “facts” upset me severely. And I began to search for how I might actively help one family affected by the disease—not to save “the poor boy” from some “terrible parent”, but to somehow, in some small way, help ease another family’s burden. Yes, that episode could have been written differently, but the “reality” of the boy’s frustrations and the realization of his parent’s overwhelming responsibilities as portrayed in that episode moved me to tears, and from tears to action.

For a year I have struggled to find where I might have a positive impact. I was frustrated to find I could not simply connect with some group providing free respite care to families affected by Duchenne—I spent a month, full-time, searching. I was angered to discover that no one in the entire United States is providing free or low-cost respite care for these families, and that no funds are available because Duchenne is not a “mental” disease.

And I became discouraged. And I withdrew. And I took no action because it was “too painful” to be of no help. I thought, I cried, I prayed, and I periodically read the DMD Forum and MD-List messages. And the “cruel facts” impacting “real people” tore at my heart. And I took action. And now I’m writing a practical reference book that I hope will help families impacted by Duchenne.

Perhaps through Living For Today, Preparing For Tomorrow I will help ease the burden of one family—perhaps many more. Either way, I praise God for that offensive ER episode and that I became aware of the “cruel facts” about Duchenne.

The use of clear, even “offensive” phrases and facts about Duchenne must be shouted to us ignorant “outsiders” to make us understand how this disease impacts real lives of real boys and real families. We cannot allow today’s “Political Correctness” to minimize our understanding.

We “outsiders” can understand that it is not every boy with Duchenne who throws a tantrum, and that when it’s required, a mother who gives her teenage son a bath “like a baby” is loving, not abusing, her son. A boy “sentenced to a wheelchair” is not guilty of any crime, but the phrase elicits emotions of the disease’s unjustness—not so we say, “Poor little boy,” or, “What a cruel mother,” but so we say, “What a cruel disease! What can I do?”

Many advocate that us “outsiders” must accept every disability and disease as “normal”. But it is not the disability we should accept, it is the disabled. Should a boy in a wheelchair be accepted into society as a full-fledged citizen? Absolutely! But do you really want us “outsiders” to accept Duchenne as “normal”? Should we “accept” that any boy be in a wheelchair because of Duchenne? Should we see as “normal” even one boy dying at a young age?

In 1988, the first employee I hired in my small computer store was Willie, a boy in an electric wheelchair. He was bright, intelligent, and a tremendous asset to my business. One day he told me he needed to call his parents—to leave early—because he needed to go to the bathroom. I smiled and pointed out that the store restroom had handicapped bars—there was no need for him to leave early. He smiled and continued his work. After a few minutes, he insisted he call his parents. “Sure, Willie. No problem.”

As was their normal procedure at the end of his workday, his parents drove up in their beat-up van, pulled out the plywood ramp and struggled to push Willie into the back of that van.

Willie quit shortly after that, and his family moved out of state.

Thirteen years ago, I knew Willie was one of “Jerry’s Kids”. Today I realize the realities of the “Duchenne” Willie had. Today I realize why Willie could not use the handicapped bars. Today—13 years later—I realize that with no treatment or cure, my employee, my friend, the intelligent boy in the wheelchair, may no longer be facing the struggles I saw as an “inconvenient” part of his life. And today I am angry! Not at Willie or his parent, angry that I did not understand about Duchenne. Angry that I had allowed myself to be convinced that Willie’s disability was “normal”, an acceptable part of life. Angry that I did not act 13 years ago. Angry that finding a treatment or cure—or reaching out to help one family’s burdens—did not become a priority in my life.

Yes, we “outsiders” can be convinced to accept every disability or disease as “normal”. But is this what you want…?

I’ll send in my small donation because it’s sad that those parents have to spend so much money. Honestly? It’s sad that he needs a wheelchair. I’m not really convinced that’s the way it should be, but to stand up, to say anything, that would bring ridicule.

So I’ll smile because I helped out that family; I helped pay for that new wheelchair. I’ll smile because I now understand that a boy with Duchenne has no greater challenge than my own son. Sure, the teenage years are hard, but he’ll pull through okay, that’s only normal. When he’s 25 or 30, then he’ll understand.

“And by the way,” I’ll say to my son, “What ever happened to that boy at school? You know, the one in the new wheelchair—I haven’t seen him around lately. But I guess that’s only normal. People move a lot, you know, and kids come and go.”

Should you or your boy be “objects of our pity”? No! That’s exactly my point! The disease must become the object of our scorn!

The happy family with a boy in a wheelchair may elicit my pity and move me to make a donation, but the shock of a boy emotionally tormented by a cruel disease and cruel doctor makes me weep and demands that I ask, “Why is this happening? What can I do?”

Am I asking that your life be an open book? Should you reveal every detail of your personal struggles to me or any other “outsider”? No! The “realities” of Duchenne can be shown through fiction, through “based on real life” stories such as that ER episode.

Should your son throw a tantrum in public to “enlighten” us? No! But, if he does, you should not be ashamed when others get a small glimpse into the realities of life.

The boys and families affected by Duchenne must be “real” to us “outsiders”. We need to see the happy family, we need to see the victorious boy, and we need to see the challenges, fears and frustrations that we may never experience.

Should you rejoice when a “boy with Duchenne” throws a tantrum on ER? Well…, yes! That was for me the first “real” portrayal of the frustrations a boy and family might be facing. I’m certain the portrayal of that boy’s tantrum was hard for you to take, possibly devastating. It was for me as well—because it was not part of my life experience, because I finally understood that there is a boy out there who is hurting more than I ever imagined, a parent facing situations I could only begin to fathom.

Should fundraising for Duchenne become like the late-night pleas for the starving children in Africa? No! There must be a balance. But to me that episode was balance. I’ve seen a lot of happy little boys in wheelchairs. I’ve watched and cheered as the Special Olympics showed the children’s determination and victory. But I had never seen so dramatic a glimpse into a “real” boy’s frustrations.

Either the “cruel facts” of Duchenne will be thrust upon us “outsiders”, or its victims will be left to plead for each government handout. Either more scientists will be moved to dig for a treatment and cure, or we will sit, we will wait, and we will watch another “happy little boy” get his first shiny new wheelchair. And us ignorant “outsiders”? We’ll cheer and pat each other on the back because we paid our taxes, we sent in our $20 donation, and we helped make another little boy smile.

I pray earnestly that the “facts” of Duchenne will soon change, and I have lobbied for increased funding for research and assistance programs. But until the cure is found, until Duchenne has as little impact as polio, the “cruel facts” must be made known. They must hit hard at us “outsiders”. They must offend us. They must make us hurt. They must make us cry. They must make us angry. They must move us to action.

I will never “understand” the impact Duchenne has on you, your boy, and your family. How can I? I am an outsider. No matter how close I may be to your family, no matter how much I learn about the disease, no matter how aware I may become to your joys, fears and frustrations, I can never experience them. I can never “feel your pain”. The “cruel facts” of Duchenne only hint at the truth.

Now that I have had my glimpse into the truth, will I falter and again become discouraged? Quite possibly, maybe even overwhelmed. And when I do, I must continue to see the “reality” of Duchenne—the pains and the victories. I must continue to see that my “insignificant effort” cannot be insignificant if in some small way it helps just one family.

While the “cruel facts” are needed to open the eyes of us “outsiders”, I pray you do not for a moment accept these “facts” as the “truth” for your boy. Your son is not a statistic. Statistics tell us what has happened in the past, not what will happen with your boy.

“Facts” are not “Truth”. Facts are about yesterday. We do not know what tomorrow may hold. We do not know which one person—moved into action—will help find the cure.

“Those who have not measured life with my ruler will take time to educate. They cannot see the sorrow in my heart nor can they hear it screaming for them to listen.” Pat Furlong, President MD Parent Project (lost her sons at 16 and 17)

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This article is from Living For Today, Preparing For Tomorrow. From Parents. To Parents. A Parent's Guide to Living with Duchenne Muscular Dystrophy

This book is dedicated to the parents and guardians who battle against their worries, who must prepare for tomorrow and yet grab hold of today, striving to make today the best day for their children and family.

 "Do not worry about tomorrow for tomorrow will worry about itself.
Each day has enough trouble of its own."     MATTHEW 6:34 NIV

© Copyright 2001-2002, Rich Clingman, All Rights Reserved - www.LivingForToday.org/copyright.htm
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