Within the Duchenne Community, I’ve Found Camaraderie, Support, and Joy
A conga line of people snaked through shaded outdoor tables as the setting Florida sun warmed their faces. For all the conga lines one can imagine, this one was slightly different — people in wheelchairs were also grooving to the music. They had Duchenne muscular dystrophy (DMD), and they weren’t letting a fatal disease rob them of any joy.
I recently spoke at the CureDuchenne Futures Conference for families affected by DMD (my parents started CureDuchenne in 2003, shortly after I was diagnosed), and one thing I observed as I watched boys with Duchenne of all ages was the hope, joy, and life each of them brings to those around them.
As one of the oldest DMD patients at the conference, held in Orlando, Florida, from May 27 to 29, it was an eye-opening experience for me. I saw a piece of myself in the eyes of each person with Duchenne. I knew that despite small differences in our disease progression, we all had experienced the same struggles — being unable to keep up with our peers, losing abilities we once had, and needing someone to help us in the bathroom.
One of the things that was reaffirmed for me that weekend was that it’s OK to ask for help. I also noted the resilience of our Duchenne community, and I acknowledged my belief that the best way to overcome this disease is to live joyfully despite the challenges.
The keynote speakers invited by CureDuchenne for the Futures conference showed the audience what real brotherly love looks like. Justin Skeesuck, who has multifocal acquired motor axonopathy, an extremely rare neuromuscular disease that has left him unable to move his lower body and most of his upper body, was pushed 500 miles by his best friend, Patrick Gray, in one of the most difficult pilgrimages in northern Spain, known as the Camino de Santiago. The film “I’ll Push You” documents their adventure.
Their talk hit me right where it needed to. One thing Justin and Patrick said that kept playing on repeat in my head was to not rob other people of the joy they receive from helping you.
I’m often hesitant to immediately ask for help for fear that I will inconvenience the other person. Justin and Patrick helped me turn that idea on its head. Helping others in whatever struggle they are going through separates humans from mere animals and delights the doer. By not allowing other people to assist me with physical activities, I’m taking something away from them. Swallowing my pride and letting someone else help will in turn help them.
For a disease that should make everyone upset or angry, I saw the opposite throughout that weekend. I saw wheelchair races around the outskirts of the hotel. I saw pure joy as people went up against each other in video games. I saw old friends embracing.
Duchenne takes away a lot, like our ability to just be kids, our time, and our relationships. But the moment we let it take away our reason for living, we’ve let it win. I’ve decided that’s why, despite the blood, sweat, and tears, we all keep living, loving, and learning. We let the good overcome the bad because there really is a lot to love about being alive.
There is always room to be upset about our circumstances. We can’t go around suppressing all of our negative emotions. But the only reason that explains what I observed is that we let the positive emotions prevail. We let the joy of life propel us through its difficulties.
And we join the conga line to celebrate how far we’ve come.
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