His palms firmly pressed against the pommel, he holds the sword close to his chest. He can feel the heat from the fire on the other side of the stone wall. Fear has no home in this dangerous place, and yet, there it is. It sits on his heart like a black stain, overstaying its welcome.
He takes a deep breath before storming the lifted gate into the castle, facing what he’s been running from for a tremendously long time — 33 years, to be exact. He turns the corner and there it stands, the dragon that has claimed this castle. Riches and jewels line the fortress walls. And there, sitting at the feet of the enormous dragon, the name of the beast etched on a solid gold bar: “Becker.”
But this isn’t a tragedy; quite the opposite. This is a story of acceptance and resilience. It is an uplifting tale, involving a series of quests to figure out who the main protagonist really is. There are chapters of light and chapters of dark, shrouded in a mist that obscures the path ahead.
This is my story.
My journey previously saw muscular dystrophy relegated to the shadows, and for a long time, I tried to keep it that way. I was able to act as if it didn’t really exist, because my physical abilities remain mostly intact.
As it turns out, I was born the same year that scientists discovered the cause of Duchenne muscular dystrophy and the milder Becker muscular dystrophy: the lack of, or a shorter version of, the dystrophin protein.
I was diagnosed with Becker muscular dystrophy when I was about 5. My half-brother began to show the classic symptoms of falling and labored efforts to get up from the ground. From there, it was a matter of doctors suggesting I be genetically tested to see if I had inherited the disease, too.
Back then, I had no idea what this would mean for me, because at the time, I was functioning normally, with only dormant missing muscle proteins.
Eventually, when I became an adult, I learned of the term “invisible disability.” The word “disability” was something I’ve always had a hard time relating to because my only education involved the people surrounding me when I was young. My half-brother used a wheelchair, so he was disabled. Sure, but not Andy.
One important detail about Becker and Duchenne is the amount of variability from one person to the next. This variability affects us in varying degrees. Since I fell on the milder side, people tended to forget about my disease. The book slowly collected dust on the basement shelf.
For example, when I was younger and attended MDA summer camp, I felt out of place, as though I was taking someone else’s spot — someone more deserving than I was. I could still do most things for myself, aside from knowing my limits with exertion. Most days are good for me, but if I push myself a bit too hard, I deal with muscle soreness for a few days, among other issues.
As I’ve grown older, it shows more than it used to, and I am learning how to accept this, one day at a time. I’m growing more comfortable in my own skin, which includes opening up to people about the challenges I face so that they may see any disability, large or small, in a new light. My goal is to illuminate the path to the stone that firmly clutches the sword, a sword that is reserved for the hero.
I write this now as a symbol of accepting who I am: I am a person with a disability. I write this column to encourage others with hidden issues to face down their dragons and conquer their fear of acceptance; to rise above the parapets and scream triumph to the world.
As the hero faces down the dragon, the sword slowly drops to the stone floor. The hero closes his eyes and holds out his hand to the emptiness, surely to be burned to an ashen crisp. The dragon pads voraciously forward only to find a single outstretched hand blocking his path to the intruder. Bewildered by a courage previously unseen, the dragon bows and releases the rage of fire he had held inside. The smoke rises, and the hero stands lion-hearted next to what he’s been running from for too long.
I hope you will join me on this next adventure and feel empowered to live and share your story, as only you — the hero — can. I’m not certain what the next page will hold, but I have a hopeful heart for myself and for you.
Welcome to the castle.
Note: Muscular Dystrophy News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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