Throughout my life with Duchenne Muscular Dystrophy I have noticed some patterns between me and my bros with this disability. First of all, I think I should provide a definition of my disability for those of you who may not be familiar with it. My illness slowly degenerates my body muscles and it primarily affects males 1 in 3,500 to be exact. A way to describe my disease is that my muscles are like strong tires that have a hole in them and as time passes by they get weaker and weaker until they loose all of their air.
Currently, I have five close friends that have this same diagnosis and we always enjoy our deep conversations. So, I have found some commonalities that most of us share and some very distinct differences that make us who we are as a person. Obviously, we are all unique in some way or another like any human being. Therefore, here are some pet peeves, aspects of our illness, likes and dislikes about our situation that we all have shared with each other at some point in the past.
Warning: Some of this things may only apply to me and my friends with DMD.
1. Our feet and our muscles are sensitive which annoys our personal assistants or anyone helping us but there is nothing we can do so they must deal with it.
2. We tend to get cold easily so people will find it weird when we are wearing blankets when it’s around 70 degrees.
3. When our hands are very cold, we cannot longer drive our power wheelchairs.
4. We live life to the fullest and we often don’t give a crap because of our short life expectation.
5. The most annoying moment is when a bug lands somewhere in our body because all we can do is spin in circles and look crazy. Unless we decide to awkwardly ask a random person to help us take that terrifying looking thing off our body.
6. It annoys us that whenever we go out to bars we have to have someone helping us in case we drink too much and we have to pee. But, when we find a new friend willing to go out plus help us pee and put us to bed afterwards, that is the most rewarding feeling in the world.
7. We hardly ever go into a pool because of the logistics and time it will take us to get inside.
8. Every muscle that we stop using dies out. So, some of us try to do as much as we can to stay strong and others of us rather get someone’s help to stay comfortable. Sometimes it varies on the given day. Some days we want to do whatever we can to stay strong. Other days, we are just tired of trying so we would feel better if someone helps. So, simply ask us if we want to do the task on our own or if we need the help to accomplish it every time.
9. It’s often hard for us to believe that any girl would want to be marry or be in a committed relationship with us because of our disability and the idea of losing us at a young age. Especially when there are millions of able-bodied guys around they can choose that wouldn’t have that problem.
10. We hate wearing those heavy things that are known as coats because it makes it tough for our weak arms to move so we rather wear silly blankets or a light sweater.
Here is an example:
11. All of us do love people but is sometimes rough for us to physically show it to our loved ones since we can’t give them hugs so we always have to ask for it. That’s too much work so sometimes we just forget but that doesn’t mean we don’t love you so don’t take it personal.
12. It annoys us the fact that when we want to kiss or make out with a girl we can’t just do it. We always have to ask first which allows the girls to think too deeply on weather or not is a good idea to do it. Although some girls find it better if guys ask for it so for those girls our situation is better. In the past, there is one skill I have used to get around the issue of not being able to kiss girls unexpectedly. The skill consists on that if the girl I am dying to kiss gives me a hug I just go for the kiss in that moment. Honestly, it has worked more than asking for the kiss politely.
13. When we get sick it sucks when we are at a public place by our selves with no one around to help and our nose starts running. Usually, the times I need something I’m comfortable asking others for help just not when my nose runs. People may find it super weird to blow someone else’s nose other than their own.
14. We have some hope in finding a cure to our disease. But, we have accepted our disability as it is and we don’t see it as something negative anymore. It is only a different life style because the disability doesn’t limit us from achieving anything our heart desires. We just sometimes need the help of others to accomplish some tasks. Other than that the disability itself doesn’t define us. We give the definition to it throughout our lives.
As you can all clearly see our lives aren’t easy just like any other life but we still feel blessed to be alive. For me, every day I get to breath is an accomplishment because I know others with my illness that didn’t get to make it to my current age. But, what me and some of my DMD bros have concluded is that if anything, our disability motivates us to make our time in this earth more worth it. Plus, it encourages us to want to get our goals done fast since we don’t know how much longer we got. This mentality applies to anyone though, we should all live our days to the very fullest. As far as finding a girl that wants to spend her days with some dying guy we know it can be complicated. However, it doesn’t mean we will stop trying to show girls that it can be worth to be with us even though we might not have as much time left. At least if we find a girl willing to be with us we know we have found our selves true love because only when you really love someone you won’t care about anything.
Overall, a lot of guys with Duchenne Muscular Dystrophy have defeated the expectations society has about us. Doctors didn’t thought most of us would live past 17. Yet, all my friends have passed that age already. Other people didn’t see us graduating and getting jobs. Yet, a few of my friends work at least part time. So, we are starting to not let our initial diagnosis define us, but rather we are giving different meanings to our diagnosis. Technology, medical advances, and our strong willed characters have came to our advantages. Yes, our lives are complicated in many ways. However, we can still manage to overcome all obstacles and live the most unlimited lives.