I Can Still Fight Without Throwing Punches
When we think about fighting, we might imagine the Ultimate Fighting Championship ring, where men and women beat each other up in front of millions of fans. Or we might see soldiers firing machine guns, or Darth Vader and Luke Skywalker trading blows with lightsabers.
Our minds probably don’t go to a person in a wheelchair with a progressive neuromuscular disease. I still fight every day, but it looks different.
I’m pushing back mentally and emotionally against a body that does less of what it used to. I’m raising money and awareness for a cure. I’m giving the hope of Christ to people with Duchenne muscular dystrophy, their families, and their friends. This fight on multiple fronts is the one that gets me up in the day and makes me stay up late writing this column at night.
My parents and I never thought I’d be in an all-out war when I turned 5, but it’s a battle that I welcome with joy and open arms. I’m fighting for a goal and a purpose that is clearer than ever before. We all have our own demons, disabilities, and emotional scars to fight, but this is what I attack every day.
Everyone’s abilities change throughout their life, especially when they get older. But for me, those changes are coming faster. My family has had to hire two assistants to help me throughout the day. It hasn’t been easy to train them and become comfortable having them move me around, but no good fight has ever been a walk in the park.
Fighting for a cure is one of the greatest fights of our generation. I’m not a knight in shining armor riding a gallant steed into battle, but a young man on a wheeled, metal horse making people realize why they need to devote themselves to slaying this disease.
I don’t want any 5-year-old’s dreams crushed because their muscles don’t work like the other kids’ do. Whether I’ll ever be able to run again is irrelevant. But the idea of seeing the joy of a boy continue to run when Duchenne would have confined them to a chair is something worth fighting for, even dying for.
The last battle is the ongoing, invisible, spiritual one. This diagnosis is devastating. I’ve only gotten through it because I know that God, in his mysterious ways, is working through me. He has a track record of turning the weak into the strong.
That spirit is the only thing that I know will change the hearts and minds of boys and men with Duchenne who feel like their life is over because their bodies aren’t producing dystrophin, the protein we all lack but wish we had. And if it isn’t spiritual, I hope it’s my perspective on life that helps them through the darkest nights.
This isn’t a solo fight. I plan on carrying my brothers with Duchenne on my back. I know others will too. Even more will join — family, friends, and strangers. No one has ever won a pitched battle on his own strength.
Together we will cure Duchenne. Together we will fight against our bodies to the bitter end. Together we will show each other the love, gentleness, and respect we require to win.
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.