There is no denying that the symptoms of Duchenne muscular dystrophy steal away our physical dignity. Even in normal life, death eventually consumes and our bodies decay, only no one is an acting witness when we’re in the grave. However, with this disease, everyone sees as we struggle to get back on our feet. At a very young age, we are desensitized from the laughter that ensues, other children wondering what’s wrong with us. Yet being a six year old boy, I decided to laugh with them too.
It has been twenty-eight years since I struggled to stand tall, and now, I struggle with extreme pain on a regular basis. I admit that sometimes, I succumb to tears from the unbearable agony. I’m tempted to raise the white flag in those seemingly impossible moments. It breaks my spirit when I feel as though everything I had ever fought for was in vain, but no matter how difficult things become, a voice remains, telling me that how I feel doesn’t necessarily reflect upon the truth. And this is the choice that defines who I am, the blood that never stops flowing through my veins.
You see in this life, there will be people who try to bring us down, and obstacle courses that disguise themselves as dead ends. They will always exist. Just recently, someone who shared my limitations made fun of the fact that I am under end of life, palliative care. He was apparently too full of spunk for death, though I would say he was full of something else! I digress.
Many people may think we must overcome in order to achieve success, but gaining victory is a long and enduring process. We must walk through, unafraid, so that we might build a foundation to continue the fight with not only brute strength, but genuine courage and understanding. It makes all the difference in the world when we find that heartfelt calmness amid the continual destruction, to embrace with cries and smiles combined.
Once the beauty of acceptance discovers our minds, freedom will also find us, and in it, we are liberated from human boundaries. Dignity comes in a different form, through the choice we make to live instead of exist. Isn’t that what life is all about?
Yes. I’m in pain. Yes. Duchenne muscular dystrophy is still at odds with my decrepit abode. It will get the better of me from time to time, but DMD will never get the best of me because when I was a little boy, I saw something beautiful in girls and women that I could never pinpoint. I’ve been searching for it since. Although chances are slim to none, I am determined to make someone smile. My question is: what drives you to live?