Throughout my life, a few things have remained the same. I have Duchenne’s Muscular Dystrophy, a progressive muscular disease that slowly weakens me. This results in a lose of ability over time.
I have found things that are inherently impossible for me now. Walking is an example of that. Everything else is possible with motivation and hope of getting better. Those are the two things required to be the person you want to be.
In the beginning of my life (before age eight), I knew there was something different about me and didn’t quite know why. Firstly, I started using a wheelchair. The issue of my emigration from India provided another possible source for my differences. Some version of this probably went through minds of other kids about themselves. Everything changed a little after understanding this wasn’t the end of my difference, things would surely get worse.
Let’s be clear about something, I never thought of myself as disabled or damaged. I am just different, like a person with green eyes is different from a person with brown eyes. Never allow another person to define what and how you can do anything. Living without a hindrances is a great gift, but beating what everyone thinks is a greater reward. As with all things, the more effort employed, the better the outcome. This way of thinking changes your perception of yourself. You know for a fact that you are not less able than anyone else. Never put artificial limits on yourself.
I have never attended a support group. Almost everything I’ve gone through deals with itself, apart from the first near death experience. This isn’t an ongoing struggle. This is who I am or who I always was. Nothing that comes your way is beyond your ability to cope, whether that means sharing your story with others or dealing with it in your own way.
This brings me to my experiences with other kids when I was also that age. Every year throughout high school, I along with other kids struggling with purely physical differences attended a gathering. You know the almost forced gatherings setup by well-meaning adults for discussion.
We were asked questions to setup conversation, so-called icebreakers. Would you take a cure if it was available? This is one I remember well. The majority answer was no, excluding myself and one other among the 50 or so others. My reaction to the majority sounds in my head. Why? The answers went something like this: it would change who I am.
I reacted with silent cynicism and confusion. This makes no sense. A cure isn’t retroactive (someone won’t go back in time and cure you at birth, anyway that would make a cure much easier). How can you possibly refuse the cure when it is almost my deepest desire? Then it hit me. My 15-year-old self thought they simply can’t hope because the low likelihood hurts them too much. It helps them cope. The disease is an ingredient of who they are. If the question wasn’t hypothetical, they would stop lying to themselves and say yes.
I now think a cure just administers physical improvement, keeping you the same person inside. If the cure would change more than that, the disease has too much power. That is the generally accepted conclusion, a really bad disease limits what opportunities that person has. I admit that without Duchenne’s Muscular Dystrophy, I would have a different job, but I don’t think my personality would have changed that much. I would be more social than I am now, but isn’t that a good thing? Limitations are a bad thing. Never cripple yourself without trying. A battle that is lost in the mind, is pointless to fight.
This post is getting a little too long for one day (hands tired). The key lies in finding your purpose. Take what qualities you have. In my case that is a fighter personality, maximum effort yields maximum results, observation of everything, railing to challenges, and keen memory. Find what you are supposed to do. I am supposed to push through the expectations of others, show them they can do great things, and show them what I can accomplish. Never give up or die trying.