Finding Joy by Focusing on What Duchenne Has Given Me
Prevailing in the challenging seasons of life builds endurance for the future
“We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.”
I nervously recited this Bible verse from the book of Romans (ESV). About 450 people were intently staring at me from behind their Michelin-star dinner and exquisite wine.
What I was trying to show in my speech for my parents’ foundation, CureDuchenne, was that while Duchenne muscular dystrophy has taken a lot from my life, it’s also given me a lot — a big family of supporters, the endurance to face the inevitable peaks and valleys of life, critical thinking, maturity, and mental fortitude.
The crowd I was addressing was one of those gifts. A diverse group from all walks of life had put their time and money into curing Duchenne, a disease that ravages the muscles of one in 3,500 boys and an estimated one in 1 million to 50 million girls.
Without Duchenne, I wouldn’t have met and developed relationships with the likes of NHL star Ryan Getzlaf, NFL linebacker Clay Matthews, and world-class guitarist Zane Carney. The fight to cure Duchenne has led my parents and me to celebrity golf tournaments. We’ve made connections that amplify awareness of the condition, finding people that have the means and ability to help drive that mission. On the way, we’ve met too many incredible individuals to count.
We’ve also connected with innumerable other families around the world who are also affected by Duchenne. We recently returned from meeting two such families in Hungary. I’ve made friends with other young men with Duchenne who understand what it’s like to have your mind trapped in your body. They’ve either already gone through the same challenges as I have, or will face them in the near future. We’ve developed strong relationships because of it.
Finding the lessons in hardship
As the apostle Paul writes in his letter that I quoted above, suffering truly gives us the ability to withstand future trials and tribulations. Paul himself dealt with beatings, imprisonments, and hunger. While I haven’t faced anything of that magnitude, I’ve learned to roll with the punches because of Duchenne.
Every year there’s something new that I can’t do, whether it’s going to the bathroom on my own, walking independently, or being able to sit in a regular chair. I mourn the part of me that’s lost, but I also move forward the best I can, adapting through technology, outside help, and a little bit of ingenuity.
For example, I’ve had to find personal care assistance, which is a challenge because of a nationwide caregiver shortage. Between finding an assistant, attempting to receive caregiving pay through the state, and learning how to interface with new people 24/7, I’ve encountered a lot of challenges and tough learning experiences.
Each problem that I solve and every time I prevail in a challenging season of life, I build endurance for the future. Having a disability like Duchenne is a kind of suffering, but it makes me strong — not physically, but mentally. As the old saying goes, diamonds are formed with time and under pressure.
I’ve learned countless life lessons much earlier than the average person. I’ve had to manage employees that care for me, instilling in me leadership abilities. I’ve had to explain to people I just met how to transfer me out of my wheelchair, helping to improve my communication skills. I’ve learned to eat a healthy diet and find time to rest to reduce the disease’s progression, building increased discipline. I owe all of that in some way to Duchenne.
Through awareness and fundraising with CureDuchenne, I’ve made connections with people from every walk of life and seen places that most never will.
I would rather be able to simply ride a bike, work out with friends, play a sport, or travel as much as I can, but it’s also valuable to realize what I’ve been given in spite of this terrible condition. Knowing what I’ve gained from having Duchenne keeps me going when the going gets tough. If I’m dealt this hand, I might as well do the best I can to win with it.
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.
My various diagnosed genetic diseases have made me crudely aware of how complex the cosmos, including ourselves, really is. Every day seems to lay out before me a new set of opportunities and hazards and realities I must face, just to keep going. And then, I must look into the stuff I previously faced, and bring them all together. I have had 55 cancer-related actions, then add the non-cancer stuff such as LGMD, life circumstances, bacteria, etc. and it is quite overwhelming and frightening. But the comfort comes when I remember I am 83 YO, and my birth doctor told my parents I would probably not see my 3rd birthday. So God, my family and friends, and even my enemies, must have helped me somehow. oldkarl