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.

Prepare for 90 at 20

There are very few things that humans cannot control, overcome, or at least influence.  We can build dams on rivers, create lakes, control, and put out forest fires. We have even found ways of overcoming gravity.  However, there is one thing we have not learned to control, and that is time.  Even if we could somehow slow the planet’s rotation and add more days to the calendar, it would not change the time that we have to live.

Deny and fight it all you want, but there is no overcoming it, and we all know it’s there and will likely happen before we are ready for it.  Preparing for old age before it’s too late strikes home for me.  The longer you live, the more people you know who pass away, then before you know it, your parents have become old, and you realize it’s inevitable for you too.  Many programs and books help you prepare financially and medically, which is excellent.  Unfortunately, there’s not much help concerning the social and the hard decisions that accompany old age or weakness caused by age or disability.

My Experience

I was diagnosed with Duchenne muscular dystrophy when I was four, at which time the doctor informed my parents I might live to be 18.  At the time of writing this article, I am four months away from 39.  There was not much worry about me outliving my parents.  They were in their 40s when I was born, so you can see that they are now what you would call elderly. I’ve been very fortunate to be abnormally healthy.  When it began to look like I would outlive my parents, they created a trust to ensure I have their home and meager financial assets on their passing.  I am on long-term care, which does not allow me to have more than $2000 in assets.  So there are definite steps we had to take.

It sounds like it’s all taken care of, doesn’t it? When my parents created this trust with an attorney, there was no thought given to their eventual failing health.  But too late, we recognized we had not prepared for their failing health.  We were getting ready to take steps to be ready for the process of aging.  In December 2020, both fell, each ending up in a nursing home for over two months. It was glaringly obvious we were not set up for this sudden development.  I was taking steps to be in a position to support them and myself but needed another year. Almost four months later, we’re still struggling.

How I Will Help

After going through these difficulties, I realized that I don’t want anyone else to go through this.  Having the experience of being unprepared for it to happen to my parents made me realize that I need to start working with people in this area. Not only have I seen it happen to the people I love most, but I have lived it.  As a man with Duchenne muscular dystrophy, I understand what it is to lose physical abilities gradually.  You may ask if there’s any way to prepare or if there’s any way you can make a plan for old age when you’re 40?  The answer is yes, and I will help you at whatever age you are right now.

What I do as a life coach is regardless of what age you are, I help you make a plan to move into old age on your terms well prepared.  If you drive, realize someday that old person who should not be driving because they almost ran into you will be you someday unless you plan now.  If you start planning at 20 years old, or whatever age you are now, you will be able to quit driving on your terms; anyone who has had to make their parents stop driving those how heart-wrenching it can be.  On the fourth Friday of each month at 130 Eastern, I will host a free webinar telling about my experiences and give a few ideas of what you can do to prepare.  Should you want to work on it more or do more one-on-one with me as a life coach, you can buy a chosen package.  Getting old or becoming feeble is inevitable; It will happen to each of us.  But I will guide you in a positive direction to age with integrity and on your terms.

Leap of Faith

Faith is an often misunderstood concept. When people hear the word faith, they tend to think of religions where an individual believes in a supreme being of some sort. However, people do themselves a great disservice by thinking that faith is only religious. Faith in one’s self is perhaps the most significant asset any individual can attain in life. As children, we were full of faith; a child has faith that when an adult puts their hands out and says, come over here,” they can walk to them.