Muscular Dystrophy

What Makes a Hero?

Hero?

I was once asked what I thought about calling individuals with DMD heroes and warriors just because they have a disability.

True, it’s challenging to have DMD, but every person on the Earth has a struggle of some sort, and no one understands someone else’s fight. You bemoan your fate, but if you had to live with my normal, you might handle it better than I do, and I may handle yours better than you. However, I don’t see myself as a hero or a warrior just for living my life. I’m just doing what I have to do.

Hero Negatives

Believe it or not, calling a person a hero can actually have negative effects on their self-esteem.

For example, I grew up in a small town and am pretty well known. I struggled to be “normal” most of my life until I realized there’s no such thing. When I was diagnosed with DMD, my family was told I might reach 18. I wouldn’t accept that. I lived my life as though by 18, I wouldn’t have muscular dystrophy. As a 39-year-old with DMD, you can guess how well that went. I just wanted to live a productive life. I hated it when someone said, “If Ryan can deal with what he does and never complain or feel sad, I know, I can’t complain,” or “I can handle anything.”

As unintentional as it is, the “hero” label can actually complicate matters as adolescents and young adults with Duchenne grapple with their own self-identity, particularly when they already have so much to bear. But those details are for another article.

Even as an older adult, it isn’t easy. There are days I feel sad and don’t want to do anything. I’ve often cursed DMD and didn’t want it. But then there were so many people that I felt I would disappoint or relied on me to be strong that I couldn’t express my feelings. I finally learned to do it and found it was beneficial, and it also helped others to see that Ryan has hard times, too.

Facilitating a Hero

My uncle was highly decorated in the military and, by all rights, was a hero for the gallant deeds he did. He would never say he was a hero. He just did what he had to do.

I’m not saying people with disabilities are not warriors and heroes, but most people don’t want to be called a hero just for being alive.

For example, I don’t want to be known as Ryan Russell, the guy in the wheelchair. I want to be known as Ryan Russell, the Dr. of psychology, the Eagle Scout, the author of Rectify the Avenging Angel, or the most important to me, a son who took care of his parents in their last days.

So when you tell your loved one or friend they are a hero, make sure they know they are a hero for something besides having a disability.

By Dr. Ryan J. Russell

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Human Touch and Disability

When was the last time someone passing by brushed your arm or touched your shoulder? Remember the last time you were able to give someone a real five with an audible noise? If you can’t recall, it’s possible you don’t have DMD or have not left your house since Covid started. Touch is something humans quickly take for granted; it is a form of nonverbal communication. If you observe people and even think about your interactions, you will see many touches exchanged. Someone with Duchenne muscular dystrophy or anyone who uses a wheelchair misses touch.

There are multiple reasons why touching stops. First, there is a wheelchair or medical apparatus in the way. Second, a person interacting with you cannot touch you without conscious effort. Third, no one wants to be the person who breaks you or fears they might hug you too tight and make you uncomfortable, break your wheelchair, break your bones, run over themselves, knock you out of position, etc.

I was in Walmart once when I saw a teacher from 6^th grade; I hadn’t seen in years; she hugged me and accidentally turned my chair off. But the human contact was worth the awkwardness of asking her to turn my chair back on. It is very likely that at some point; you miss it, but you can’t just expect people to know they won’t break you. If you want a hug or to shake someone’s hand for real, you have to ask or say I’m ok with blank then explain how is best. But most people don’t plan to give that much time.

One of the hardest parts of being a wheelchair user is that you have to ask for things or give verbal agreement to things your human brain is not programmed to ask for. For most of my adult life, I lived at home, and until I was almost 30, my mother was my primary caregiver. My father would help, but he didn’t do as much she did. For the most part, she was the only person who touched me. As I write this article, it feels strange talking about being touched or asking someone to touch me because it sounds sexual. It’s awkward because asking for a hug seems odd, and you don’t want to be the creepy guy in the wheelchair asking people to touch him. It wouldn’t go over well.

I mentioned how asking for touch sounds sexual, but let’s discuss the awkwardness and confusion your body may experience. We will talk about anatomy as tastefully as possible to keep it rated G. As you may or may not know, the male anatomy has some physical reactions and responses we have no control over.

During the time of my life where I had only my mother as a caregiver, and very little human interaction, an innocent touch or the rare hug by someone else could cause a reaction. Before my mom passed away and after she was no longer my caregiver, there were many times I just had to ask her to hug me. I get touched more than I used to; I don’t have to express the need for touch. For those reading this, don’t be embarrassed by what reactions occur. For family, friends, caregivers, etc., be receptive and don’t be afraid to ask if you can hug someone with DMD. It is also important to note that all people and disabilities are different. A simple unwarranted touch could be painful to some people.

Also, try to protect your loved one from unwarranted hugs. I’ll never forget some crazy guy in college. I hardly knew him, yet he came running over to hug me then fell on me. Jerry Lewis, the long-time advocate for muscular dystrophy, once said people with MD are sometimes treated as or feel like half a person. Things have gotten better since this statement, and I believe the only limiting factor we face is disability-related. Touch is one of the aspects of humanity most of us take for granted, so pat the arm, tap the shoulder and hug the person in your life that may not get as much human contact as most people.