Disabled Ewing author writes about his journey across Spain – Community News

When Ewing native Bryan Steward set out to hike the Camino de Santiago, a pilgrimage of medieval origin to the Cathedral of Santiago de Compostela in Galicia, Spain, he couldnt have imagined the challenges he would face.

Steward, who suffers from Becker muscular dystrophy, has written a book titled My Own Pace: A Story of Strength and Adversity on the Camino de Santiago that recounts his entire journey, which includes hundreds of falls, food poisoning, bed bugs, wild dogs, extreme weather, exhaustion, fatigue, and weird people. He also writes about those who helped him along the way.

Steward was born in Ewing and lived in town for 27 years. Although he moved to Burlington City last year, he still has strong roots in the township.

I grew up in the Wynnewood Manor neighborhood where my father also grew up, and my grandparents lived there too, when I was a kid, Steward says. I was actually a 5th generation Ewing resident. I had a pretty traditional middle-class lifestyle. I rode my bike, played in creeks, caught frogs, collected bugs, and always went to 4th of July parades and did all the usual things around Ewing as a kid.

His mother was a preschool teacher, and his father was a model maker for Lockheed Martin. They still live in Ewing and are both retired. Steward worked at the Ewing Public Schools from 2018 to 2021 as a teaching assistant and as a paraprofessional at Lore, EHS and Fisher. He currently works as a technical support specialist for a medical software company based out of the Philadelphia area.

While attending Ewing schools growing up, he was a drummer in the marching band and jazz band in high school. He attended Mercer County Community College and TCNJ, majoring in and majored in communications.

The following is the first chapter of My Own Pace, in which Steward talks about the events that led up to his journey. The chapter is reprinted with Stewards permission.

* * *

From August through October 2017, I walked five hundred miles from St-Jean-Pied-de-Port, France to Santiago de Compostela, Spain, on the trail known as the Camino de Santiago. What made my journey unique was the added challenge of having the neuromuscular disease called Becker muscular dystrophy. When I decided to hike the Camino, I was twenty-four years old, a year out of college, working part-time, and struggling to place myself into the next part of my life. The story of this journey began well before the Camino or muscular dystrophy were even thoughts in my mind.

Growing up, my family constantly traveled around the United States during the summer, usually involving hiking, camping, and long road trips. At three years old, during a hiking trip in New England, I complained of weakness in my legs that I described as my knees hurting. The initial thought was that I had contracted Lyme disease from a tick bite. Lyme disease was rapidly spreading across the Northeast and relatively little was known about all its symptoms. This seemed a likely possibility, but a blood test produced negative results. After the relief of learning that I did not have Lyme disease, my doctor and parents were still puzzled about my weakness. I continued to complain and ask to be carried upstairs and hills. Preschool teachers noticed I had trouble running, jumping, and hopping, and I fell frequently. My pediatrician continued to downplay concerns, saying, He will probably always be a little clumsy.

As I grew older, my muscle weakness worsened. I suffered from leg cramps and tightness that caused me to walk on my toes. School gym teachers and classmates often teased me, and my parents tried to correct my walk. At age seven, I distinctly remember my fathers frustration during a vacation in Watkins Glen, New York. I complained about walking up a hill and wanted to be carried. He snapped at me, All the places we go on vacation require a lot of walking. You need to get used to it and stop complaining.

Bryan Steward outside the Cathedral of Santiago de Compostela in Galicia, Spain.

The arguments about hiking increased as I grew too old to be carried. All of this changed at eight years old, after my mother received a phone call from her sister. My aunts son had just been diagnosed with Becker muscular dystrophy after suffering from weakness similar to my own. When my mother learned this condition is genetic, her first thought was, Bryan has it too!

Becker muscular dystrophy is a neuromuscular disease that causes progressive deterioration of the skeletal and cardiac muscles, ultimately robbing one of the ability to walk. There is no cure for muscular dystrophy, although several drugs exist that can prolong the quality of life. Becker muscular dystrophy, like the similar but more severe Duchenne muscular dystrophy, is an X-linked genetic defect, meaning the condition is passed on from mother to son. Women are generally unaffected by this condition but can be carriers. My grandmother was unknowingly a carrier, so my mother and her two sisters also became unexpected carriers.

With the diagnosis came yearly visits to a neurologist to monitor changes in strength and most importantly, my heart and respiratory muscles. I dreaded being poked and prodded for hours, including ultrasounds, x-rays, and other tests that seemed so unnecessary. Although I disliked these visits, the neurologist was a caring and knowledgeable doctor who took a special interest in my case and always gave us hope for a mild outcome.

The prognosis of Becker muscular dystrophy, more than other forms of muscular dystrophy, varies greatly. My neurologist summarized the variance perfectly when he said, I have patients who are in a wheelchair at ten and others who use a cane at sixty. I appeared to be on a less aggressive path.

As I moved into my teenage years, I grew stronger and built muscle mass but struggled to run, walk upstairs, and lift heavy objects. Children in school still teased me for my weakness and inability to keep up with them. During my last visit with my pediatric neurologist, shortly before my eighteenth birthday, he asked if I was having more trouble walking long distances or up steps. I said no, but the answer in my mind was very different. He looked unconvinced and went on to explain how I would soon begin to have more problems.

During college, I noticed changes in my strength. Walking up steps became more difficult, and people in public would often ask me if I was hurt. Finding elevators and places without steps became a common occurrence for me when other people were around. Being seen as weak scared me. Despite being faced with the reality that my condition was progressing, suddenly I chose to hike, go on long walks, and do tasks that required strength. As inspirational as this would seem at face value, these changes stemmed from denial. I thought that maybe if I pushed myself to the limits, then I could pretend muscular dystrophy had no impact on me. I wanted to believe the lie I told my doctor was true.

My college years were some of the most active of my life. I spent the summer of 2013 living and working at a dude ranch in Wyoming and the following two summers on solo trips around the American West. The more I did, the more muscular dystrophy felt like something I could ignore, but in reality, I was being haunted by a daunting specter. Facing these challenges was my way of resisting reality.

While attending The College of New Jersey, I became involved with a group called the Society for Treatment and Awareness of Neuromuscular Disease (S.T.A.N.D.). The club president, living with Duchenne muscular dystrophy, welcomed me into the organization. Initially I dreaded going to the meetings and talking about subjects I did not want to have any association with, but I continued to participate and hoped it would lead somewhere good. Part of me wanted to let go of the fear I felt towards my condition and embrace who I was. I quickly became a leading member and eventually president myself.

Our group organized several fundraisers and events on campus, including a walk across New Jersey. A close friend of mine agreed to walk with me on the three-day, forty-eight mile journey from the Delaware River to the Atlantic Ocean. The walk amounted to little more than an article in a newspaper, but this event had a strong impact on me. When we reached the warm water of the Atlantic Ocean, I felt that anything I set my mind on was possible. Maybe this adventurous spirit was born from a refusal to accept the truth, but I wanted to keep pushing my bounds. My immediate thought was to plan a walk across the entire United States after graduating college, but that never happened.

After several failed post-college interviews for full-time jobs, I became stuck in a series of temp jobs that went nowhere. I decided to make the most of this lull in my life and finally plan a big adventure. Maintaining my current job would not be possible if I took off a year to walk across the United States, but I remembered hearing about a hike in Spain that was around five hundred miles long, the Camino de Santiago.

The Camino de Santiago is a network of interconnected roads and trails across Europe leading to the tomb of Saint James in the city of Santiago de Compostela, Spain. In the Catholic Church, walking the Camino has been considered a religious pilgrimage for over a thousand years. At the end of the journey, pilgrims are issued a certificate known as a Compostela, certifying that one has walked at least one hundred kilometers (sixty-two miles) to Santiago. The most popular route, known as the French Way, begins at the northern foot of the Pyrenees Mountains in southern France and spans five hundred miles, passing through cities, villages, farmland, forests, and mountains. In modern times, the pilgrimage is more recreational than religious but still maintains a spiritual connection to healing, growth, and self-reflection.

To my amazement, my boss granted me seven weeks off to attempt the hike. My request for time off from work came four months before I was to begin my hike in August. I planned to complete the French Way of the Camino in forty days, which averaged about twelve miles a day, excluding rest days. This journey would not be like walking across New Jersey. I needed to climb over the Pyrenees Mountains, hike through the flat desolate region of Spain known as the Meseta, and then cross a series of mountains in Galicia, before arriving in Santiago. I had no idea what to expect. My only thoughts were to take it slow and not injure myself as I trained over the coming months. Most people were concerned about my well-being and questioned my decision to hike the Camino. I knew they were probably right. Intense physical exertion is not recommended for people with muscular dystrophy, so I needed to be careful not to push myself too hard.

Every day I walked at parks and trails near my home and slowly increased my distance from five to sixteen miles. I fell a lot and wondered if my body could handle what the Camino would throw at me. As the days went on, I began to feel stronger. Walking became a part-time job. Friends would occasionally join me, but I walked mostly alone. By the end of July, I had walked over four hundred miles, and I felt great. I knew I was capable of going the distance, but I would be lying if I said I was not scared. During the past few years, my adventures were a way of dodging reality, but the Camino might actually be the place where I could no longer hide. How sore and tired could I become before I gave up? I was about to find out.

Over the coming weeks, I found myself learning and reflecting as I faced fears and weaknesses that challenged me in ways I never imagined.

My Own Pace: A Story of Strength and Adversity on the Camino de Santiago is available for $12.99 on amazon.com.

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Disabled Ewing author writes about his journey across Spain - Community News

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