Dear Duchenne Friends,
When I joined our community some years ago, I set out to promote my first ever book that spoke in the perspective of a man diagnosed with this disease. It was not my intention to become one of our many voices. However, as I continued getting to know the connected families, I realized the great despair that resided among us. I didn’t feel sorry, only a need to encourage you to be your own heroes and heroines.
A lot of people consider me to be a leader of sorts. I never claimed myself as such. I just wanted everyone to believe that possibility was possible. Young parents ask me all the time for the best survival advice. I keep saying, “Let your child fall.” Once darkness presents itself, he will find the light on his own. Be there for the boy, but also have faith in his courage.
The truth is hard to swallow, but if you make the choice to live, instead of exist, this illness won’t have the power of being terminal, regardless of the given time. It’s about standing tall, even when the whole world is crumbling before your eyes, and not simply “dealing”. You have to go beyond the baby steps in order to be victorious.
Remember that tears are not a sign of weakness. They mean you are human. What matters is how you use them; to let them drown you, or motivate you to become more determined. Define yourself, according to who you are, not your physicality. Nothing and no one can take that away from you. You own your life.
And when circumstances are unbearable, choose to focus on others. Help somebody else while learning from your own knowledge. If you apply it, you will understand how to better save yourself along the way. Compassion is key in the discovery and awareness of genuine strength.
With great wonder for my impending future, I conclude this letter by hoping that it finds all of you well. There are no guarantees, neither smiles nor frowns included in this inevitable battle. Everything is up to you from this day onwards. You govern your own fate, and the rewards that follow.
As I continue breathing, I remain fearless and embolden you to stay the same. If you never give up, you will never lose. And if I pass on, then I’ll be chasing angels, but in the meanwhile, knowing all of you has been a pleasure. You, my extended and extraordinary family, are my inspiration. Regardless of what happens, you will forever reside in my heart, especially you ladies. Um, like duh… right?
See you later,