CARRYING MY BURDEN: BY BRYAN STEWARD
Around three hundred miles into the French Way of the Camino de Santiago is a monument called Cruz de Ferro. In Camino tradition, when pilgrims arrive at this iron cross mounted atop a wooden pole, they place a rock at its base. This rock represents leaving behind a burden which one has carried with them from home. By the time I reached this spiritual site in September of 2017, my Camino had been filled with countless obstacles brought about by my added challenge of having Becker muscular dystrophy, a progressive neuromuscular disease.
Although I had already discovered the inner drive needed to push my body to the edge of its abilities, by thirty-one days on the trail (the day I would reach Cruz de Ferro), my patience was nearing its end. After crawling and dragging my backpack up a hill too steep for me to walk up, I was stopped by a pair of pilgrims who gave me a familiar praising about how inspiring I was to be on the Camino. Something about this interaction affected me differently than usual. The warm feeling these words usually brought me were gone. Soon after, the trail turned into a rocky ditch that caused me to fall hard and hit my knee on a rock. I rolled over and moaned with pain, but I was able to get back up, only to fall a few steps later and hit the same knee. I stood up and kicked my backpack as hard as I could, threw my hiking pole on the ground. My heart pounded, and the same few sentences kept running through my head. “What am I doing here? I’m tired of falling! Why do I have to have muscular dystrophy? Why did I come to the Camino?”
Tears began rolling down my cheek as I slowly picked up my things and continued struggling over the rocks. As I made my way closer to Cruz de Ferro, my thoughts shifted towards the burden I needed to leave behind. What was my burden? When the iron cross finally came into view over a hill, I paused for a moment and removed a reddish rock from my pocket and held it in my open palm. A voice came to me from four years earlier, in July 2013. The words vividly burned into my mind:
“You’ve got real grit,” my uncle Jeb said, as he helped me up, and I brushed the dirt off my knees after another fall. Looming another mile and a half away was our goal, the rocky summit of Medicine Bow Peak. High above the timberline there were no trees to obscure the constant reminder of how far we still had to climb. The mountain stands at an elevation of 12,013 feet and is a four mile hike from base to summit, making it the highest point in southern Wyoming.
“I’m gonna make it,” I said, looking back at Jeb who was patiently following me up the mountainside.
“Long as those dark clouds keep their distance,” Jeb said, as he adjusted his black cowboy hat and pointed westward.
The brilliant blue sky was giving way to several dark clouds on the horizon, and we pushed forward hoping to avoid a possible thunderstorm. Our rate of ascent slowed as the trail became steeper, and my legs felt heavier. I used a hiking pole for balance and sometimes pushed off of boulders with my hands. After a series of rocky switchbacks, the trail led across a deep snow patch next to a drop off of several hundred feet. One slip here would send me sliding down the mountain. Uncle Jeb took a climbing harness out of his pack for me to wear and attached a rope from it to himself. After inching through the packed snow, with several falls that only resulted in laughter and cold hands, we came to a boulder field leading to the summit. With shaky legs, I cautiously stepped from boulder to boulder until I was standing next to a splintering wooden pole supported by a pile of rocks marking the top of the mountain.
“Congrats, you did it. Happy Birthday!” Jeb said, as he tossed me a Clif Bar.
At twenty years old, I accomplished my most difficult physical challenge to date. What would have taken the average hiker an hour and a half took me almost three hours.
Standing on the summit, I closed my eyes, took a deep breath of fresh alpine air, and listened to the wind rush past my ears. From here, the view was a seemingly endless expanse of mountains known as the Snowy Range. Several lakes at the base of the mountain mirrored the blue sky and clouds. Before heading down the mountain, I picked up a small reddish rock near the summit marker. This rock would be a reminder that I had the “grit” to accomplish goals I set my mind on.
Four years later as I climbed the hill to Cruz de Ferro, a rush of emotions flooded into my brain: relief to have reached this moment, fear for what lay ahead in my life, and joy for all I experienced on this journey. Suddenly, without any control, I began to cry. At many moments in my journey I shed tears when I encountered a difficult section and felt emotionally drained, but this was unlike any other time I cried in my adult life. My eyelids became swollen, and mucus filled my nose, causing me to cough as I sobbed. The only other time in my life I cried like this was the moment I learned the truth about a life with muscular dystrophy.
For most of my childhood, when I saw or heard of people being in wheelchairs with muscular dystrophy, I always assumed this did not apply to me. During all the childhood doctor visits, I was always told how good I was doing, how much I was growing, and how mild my case was. I was never told that one day I might be in a wheelchair and ultimately die from this condition. I would probably live a near normal lifespan, but the average life expectancy is in the mid-forties. Just like any kid, I became stronger as I got older, so how was I to believe this would one day change? Surely my parents would have told me my condition was this serious?
When I was in seventh grade, I had a conversation with my sister about muscular dystrophy, and she mentioned me needing a wheelchair later in life. My response was, “What do you mean?” The look on her face was a blank stare, as if she got caught accidentally revealing a surprise birthday party or spoiling the ending of a movie. My bottom lip began to quiver, and I asked, “Am I going to live as long as most people?” In a shaky voice, she replied, “Probably not.” Tears came flowing from my eyes, and I collapsed onto a couch. For twenty minutes, I cried and cried until my tear ducts were dry. My sister sat next to me, put her hand on my shoulder and silently comforted me. Deep inside I always knew what she told me, but this was the first time I heard it spoken. I needed to hear this, and my sister was probably the best person to tell me.
In one of her X chromosomes, she had the same genetic defect as me, inherited the same way, but being a female, her other X chromosome countered the defective one. In some sense, we shared the same disease, but I was the one who showed the symptoms. A 50/50 chance determined my condition. Sometimes as a teenager, I would sit in my room and flip a coin over and over, tails being muscular dystrophy and heads being no defect. Every time I got heads, I imagined never having this condition and when I got tails I was reminded the struggles were real. Other times I would wake up in the morning, lying still, hoping that when I got up my symptoms would be magically gone.
As I moved through high school, I began to resent my parents and doctors. I wondered if they knew of the knowledge I had about my future or if they would be mad at my sister for telling me. Occasionally, I researched online about my condition and cleared the browser history so my parents would not know what I was doing. Throughout my childhood, I witnessed my parents lie to people about where they were taking me when I went to doctors. On one family vacation we had our neighbors collect our mail, and my mom got upset when a Muscular Dystrophy Association newsletter was in the bundle returned to us. “Oh, I hope they didn’t know about this now,” she said. Looking back, I understand that my parents were scared and did not know how to address the issue, but because of this, I began to feel ashamed of who I was. Whenever I sat out of gym class when running was involved, I always made an excuse to other students about hurting my knee or a simple, “I have a doctor’s note” and not elaborating. Even close friends were kept in the dark about my condition.
There was a lot of anger in me during these years of my childhood where I felt mad at the world for giving me the life I had. I was secretly plagued by self-esteem issues, and during my middle-school and early high school years, I teetered on the edge of becoming a troubled person. These were the years I grew long hair, listened to heavy metal music, wore a lot of black, and tried to create an identity where I saw myself as better than others in an effort to become disconnected from the parts of my life I could not change. By a chance of luck, I managed to keep my life on track, but the practice of hiding my muscular dystrophy stuck with me up until I came to the Camino. I felt that people would think less of me or treat me differently if they knew about my condition, but the kindness of others on the Camino taught me that it is better to be honest about who you are than to hide from something you cannot control.
As I thought about the anger I once felt regarding my diagnosis, my thoughts returned to the burden I was to leave behind at Cruz de Ferro. What was my burden? Clearly my burden was having muscular dystrophy, but how could I leave this behind? I then realized that my rock could represent anything I wanted. Maybe this was not about leaving something behind, but rather taking something with me, or swapping the rock for something else. This rock had been in my possession since my twentieth birthday, over four years earlier, taken from the top of Medicine Bow Peak. The rock was nothing more than a simple memento of that accomplishment, but over time it became a physical representation of my strength. Every time I held the rock in my hand I remembered the strain in my muscles as I climbed to the top of the mountain and the amount of “grit” needed to reach that goal. But the more I thought about the rock, the more I realized it was just a rock. I did not need a rock represent my capabilities. As soon as I declared the rock a symbol of strength, it represented nothing. What I sought on the Camino was to embark on an adventure while my body still allowed it, and that meant embracing truth. Muscular dystrophy would be a part of me for the rest of my life. People cannot always choose their burdens, but they can choose how they carry them. When I put my rock down, it would not be to let go of a burden, but to swap it for the truth.
As I climbed the uneven pile of rocks, I slipped at the top and landed on my knees at the base of the wooden pole. I took one more look at my rock and placed it next to the pole. This moment at Cruz de Ferro, on September 17, was the moment I chose what my future would be. I let go of the past, embraced the present, and accepted my burden. Maybe a wheelchair was in my future, but I was headed there no matter what. The only other option was to continue down a dark path of denial. I forgave my parents for keeping information from me throughout my childhood. Countless resources were always available to learn the truth, and nothing my parents could have said would have changed anything. There was no reason to resent anyone. Love is the only force in life worth believing in.
As I continued on from Cruz de Ferro, I felt lighter, even though the rock I left behind had little weight. I felt more confident in the rest of my journey and the rest of my life. There are always unknown hardships looming ahead, but we need to embrace the life we have been given, and find our inner “grit.” I knew I would make it to Santiago.
For the full account of my five hundred mile journey on the Camino, be sure to subscribe to my blog. To read the first part of the story, click here.
Although I had already discovered the inner drive needed to push my body to the edge of its abilities, by thirty-one days on the trail (the day I would reach Cruz de Ferro), my patience was nearing its end. After crawling and dragging my backpack up a hill too steep for me to walk up, I was stopped by a pair of pilgrims who gave me a familiar praising about how inspiring I was to be on the Camino. Something about this interaction affected me differently than usual. The warm feeling these words usually brought me were gone. Soon after, the trail turned into a rocky ditch that caused me to fall hard and hit my knee on a rock. I rolled over and moaned with pain, but I was able to get back up, only to fall a few steps later and hit the same knee. I stood up and kicked my backpack as hard as I could, threw my hiking pole on the ground. My heart pounded, and the same few sentences kept running through my head. “What am I doing here? I’m tired of falling! Why do I have to have muscular dystrophy? Why did I come to the Camino?”
Tears began rolling down my cheek as I slowly picked up my things and continued struggling over the rocks. As I made my way closer to Cruz de Ferro, my thoughts shifted towards the burden I needed to leave behind. What was my burden? When the iron cross finally came into view over a hill, I paused for a moment and removed a reddish rock from my pocket and held it in my open palm. A voice came to me from four years earlier, in July 2013. The words vividly burned into my mind:
“You’ve got real grit,” my uncle Jeb said, as he helped me up, and I brushed the dirt off my knees after another fall. Looming another mile and a half away was our goal, the rocky summit of Medicine Bow Peak. High above the timberline there were no trees to obscure the constant reminder of how far we still had to climb. The mountain stands at an elevation of 12,013 feet and is a four mile hike from base to summit, making it the highest point in southern Wyoming.
“I’m gonna make it,” I said, looking back at Jeb who was patiently following me up the mountainside.
“Long as those dark clouds keep their distance,” Jeb said, as he adjusted his black cowboy hat and pointed westward.
The brilliant blue sky was giving way to several dark clouds on the horizon, and we pushed forward hoping to avoid a possible thunderstorm. Our rate of ascent slowed as the trail became steeper, and my legs felt heavier. I used a hiking pole for balance and sometimes pushed off of boulders with my hands. After a series of rocky switchbacks, the trail led across a deep snow patch next to a drop off of several hundred feet. One slip here would send me sliding down the mountain. Uncle Jeb took a climbing harness out of his pack for me to wear and attached a rope from it to himself. After inching through the packed snow, with several falls that only resulted in laughter and cold hands, we came to a boulder field leading to the summit. With shaky legs, I cautiously stepped from boulder to boulder until I was standing next to a splintering wooden pole supported by a pile of rocks marking the top of the mountain.
“Congrats, you did it. Happy Birthday!” Jeb said, as he tossed me a Clif Bar.
At twenty years old, I accomplished my most difficult physical challenge to date. What would have taken the average hiker an hour and a half took me almost three hours.
Standing on the summit, I closed my eyes, took a deep breath of fresh alpine air, and listened to the wind rush past my ears. From here, the view was a seemingly endless expanse of mountains known as the Snowy Range. Several lakes at the base of the mountain mirrored the blue sky and clouds. Before heading down the mountain, I picked up a small reddish rock near the summit marker. This rock would be a reminder that I had the “grit” to accomplish goals I set my mind on.
Four years later as I climbed the hill to Cruz de Ferro, a rush of emotions flooded into my brain: relief to have reached this moment, fear for what lay ahead in my life, and joy for all I experienced on this journey. Suddenly, without any control, I began to cry. At many moments in my journey I shed tears when I encountered a difficult section and felt emotionally drained, but this was unlike any other time I cried in my adult life. My eyelids became swollen, and mucus filled my nose, causing me to cough as I sobbed. The only other time in my life I cried like this was the moment I learned the truth about a life with muscular dystrophy.
For most of my childhood, when I saw or heard of people being in wheelchairs with muscular dystrophy, I always assumed this did not apply to me. During all the childhood doctor visits, I was always told how good I was doing, how much I was growing, and how mild my case was. I was never told that one day I might be in a wheelchair and ultimately die from this condition. I would probably live a near normal lifespan, but the average life expectancy is in the mid-forties. Just like any kid, I became stronger as I got older, so how was I to believe this would one day change? Surely my parents would have told me my condition was this serious?
When I was in seventh grade, I had a conversation with my sister about muscular dystrophy, and she mentioned me needing a wheelchair later in life. My response was, “What do you mean?” The look on her face was a blank stare, as if she got caught accidentally revealing a surprise birthday party or spoiling the ending of a movie. My bottom lip began to quiver, and I asked, “Am I going to live as long as most people?” In a shaky voice, she replied, “Probably not.” Tears came flowing from my eyes, and I collapsed onto a couch. For twenty minutes, I cried and cried until my tear ducts were dry. My sister sat next to me, put her hand on my shoulder and silently comforted me. Deep inside I always knew what she told me, but this was the first time I heard it spoken. I needed to hear this, and my sister was probably the best person to tell me.
In one of her X chromosomes, she had the same genetic defect as me, inherited the same way, but being a female, her other X chromosome countered the defective one. In some sense, we shared the same disease, but I was the one who showed the symptoms. A 50/50 chance determined my condition. Sometimes as a teenager, I would sit in my room and flip a coin over and over, tails being muscular dystrophy and heads being no defect. Every time I got heads, I imagined never having this condition and when I got tails I was reminded the struggles were real. Other times I would wake up in the morning, lying still, hoping that when I got up my symptoms would be magically gone.
As I moved through high school, I began to resent my parents and doctors. I wondered if they knew of the knowledge I had about my future or if they would be mad at my sister for telling me. Occasionally, I researched online about my condition and cleared the browser history so my parents would not know what I was doing. Throughout my childhood, I witnessed my parents lie to people about where they were taking me when I went to doctors. On one family vacation we had our neighbors collect our mail, and my mom got upset when a Muscular Dystrophy Association newsletter was in the bundle returned to us. “Oh, I hope they didn’t know about this now,” she said. Looking back, I understand that my parents were scared and did not know how to address the issue, but because of this, I began to feel ashamed of who I was. Whenever I sat out of gym class when running was involved, I always made an excuse to other students about hurting my knee or a simple, “I have a doctor’s note” and not elaborating. Even close friends were kept in the dark about my condition.
There was a lot of anger in me during these years of my childhood where I felt mad at the world for giving me the life I had. I was secretly plagued by self-esteem issues, and during my middle-school and early high school years, I teetered on the edge of becoming a troubled person. These were the years I grew long hair, listened to heavy metal music, wore a lot of black, and tried to create an identity where I saw myself as better than others in an effort to become disconnected from the parts of my life I could not change. By a chance of luck, I managed to keep my life on track, but the practice of hiding my muscular dystrophy stuck with me up until I came to the Camino. I felt that people would think less of me or treat me differently if they knew about my condition, but the kindness of others on the Camino taught me that it is better to be honest about who you are than to hide from something you cannot control.
As I thought about the anger I once felt regarding my diagnosis, my thoughts returned to the burden I was to leave behind at Cruz de Ferro. What was my burden? Clearly my burden was having muscular dystrophy, but how could I leave this behind? I then realized that my rock could represent anything I wanted. Maybe this was not about leaving something behind, but rather taking something with me, or swapping the rock for something else. This rock had been in my possession since my twentieth birthday, over four years earlier, taken from the top of Medicine Bow Peak. The rock was nothing more than a simple memento of that accomplishment, but over time it became a physical representation of my strength. Every time I held the rock in my hand I remembered the strain in my muscles as I climbed to the top of the mountain and the amount of “grit” needed to reach that goal. But the more I thought about the rock, the more I realized it was just a rock. I did not need a rock represent my capabilities. As soon as I declared the rock a symbol of strength, it represented nothing. What I sought on the Camino was to embark on an adventure while my body still allowed it, and that meant embracing truth. Muscular dystrophy would be a part of me for the rest of my life. People cannot always choose their burdens, but they can choose how they carry them. When I put my rock down, it would not be to let go of a burden, but to swap it for the truth.
As I climbed the uneven pile of rocks, I slipped at the top and landed on my knees at the base of the wooden pole. I took one more look at my rock and placed it next to the pole. This moment at Cruz de Ferro, on September 17, was the moment I chose what my future would be. I let go of the past, embraced the present, and accepted my burden. Maybe a wheelchair was in my future, but I was headed there no matter what. The only other option was to continue down a dark path of denial. I forgave my parents for keeping information from me throughout my childhood. Countless resources were always available to learn the truth, and nothing my parents could have said would have changed anything. There was no reason to resent anyone. Love is the only force in life worth believing in.
As I continued on from Cruz de Ferro, I felt lighter, even though the rock I left behind had little weight. I felt more confident in the rest of my journey and the rest of my life. There are always unknown hardships looming ahead, but we need to embrace the life we have been given, and find our inner “grit.” I knew I would make it to Santiago.
For the full account of my five hundred mile journey on the Camino, be sure to subscribe to my blog. To read the first part of the story, click here.
