Later this month, I’ll set out on an adventure on the pilgrimage trail known as the Camino de Santiago. Just like thousands of pilgrims before me, I will walk 500 miles across Northern Spain from the Pyrenees Mountains to Santiago de Compostela. But unlike so many before me, I have a progressive neuromuscular condition called Becker muscular dystrophy that causes the slow deterioration of the cardiac and skeletal muscles.
Although I am still able to walk and do most of the things I love, I am constantly confronted with staircases I struggle to climb, things I cannot carry and places I cannot go, and over time these situations have become more numerous and will continue to become more common as my condition progresses. Although I am slower than other people, I continue to push myself to walk long distances and hike to the top of mountains. Knowing that this condition will most likely put me in a wheelchair one day makes me want to stay active and do all I can do while I am still able.
My decision to walk the Camino came from my desire to push myself to the edge of my abilities, to explore new cultures, experience nature and become more spiritually enlightened. Thanks to my wonderful boss Roseann, who allowed me a two-month leave from work, the time was right in my life to undertake this journey. Following my decision in late April, I began training; in the month of May I walked more than 300 miles, proving to myself that I have the ability to complete the Camino.
It turns out that I’m not the first Camino hiker with a special connection to MDA. After getting in touch with MDA to see how I could use my walk to raise awareness and help inspire others, I learned about Patrick Gray, who pushed his best friend Justin Skeesuck in a wheelchair to complete the 500-mile Camino journey. Justin lives with an extremely rare progressive neuromuscular condition known as multifocal acquired motor axonopathy, and though our hikes will be different (for example, I will not be using a wheelchair on the trek), I identified strongly with his story, which Justin and Patrick have shared with the world in a recently published book and upcoming documentary, both titled I’ll Push You. Justin and Patrick also have chosen MDA to benefit from their hike, as I have.
In preparation for my adventure, I read the book through in a single sitting, becoming completely captivated by the story of friendship and adventure. And I recently got a chance to view the film in advance of the public release in November. Watching the film, I was moved by how real and relatable their struggle was to me. In my Camino I seek to accomplish something I have been told I can never do, just as others told Justin and Patrick how difficult and impossible the task would be. The film shows how strength is not a linear measure of how far and how much, but a question of who we are and why we live the lives we do. Although Justin was in a wheelchair the entire journey, he completed the Camino just as much as Patrick did because the strength of a human is not limited by what one can accomplish alone, but by what one can do with the help of others. For me, the film eased many of my fears of confronting the Camino alone because it showed help can be found along the way. I know I will need help in what inevitably will be the most challenging undertaking of my life.
Justin’s explanation of how difficult it can be to let someone help you when you are so helpless reveals the struggles with disability others cannot always see. Understanding what you cannot do and allowing others to help is sometimes the hardest struggle. One line from the film that truly resonated with me was “To deny someone the opportunity to help you, you deny them the joy in life.” To me, this shows how love is the most powerful force in life and showing love for someone is just as important as accepting love from others. I’ll Push You reveals how powerful the love of friendship and complete strangers can be. When I begin my Camino, Justin and Patrick’s story will be on my mind as I journey to the edge of my abilities.
Over the course of my hike, I will try to check in from time to time with updates on my experience. I hope you will continue to follow my journey.
Bryan Steward is 24 and lives in New Jersey. He was diagnosed with Becker muscular dystrophy when he was 8 years old.
Help Bryan raise money for MDA so kids and adults like him can live longer and grow stronger!