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Reflections on Life with Muscular Dystrophy

Reflections on Life with Muscular Dystrophy

I sighed as I trudged across school towards biology class, with a heavy backpack and aching legs. Muscular dystrophy made this simple everyday task an ordeal—from fear of falling publicly to being late for class. My thoughts raced from the heavy bag to my frustrating circumstances, rather than going to an exciting class and seeing my close friends. I have muscular dystrophy, a condition that limits my mobility and makes it challenging to run, walk long distances, climb stairs and perform physically strenuous tasks.

For a simple task like carrying my backpack to school, I have to wear non-skid shoes, use a rolling backpack, limit the distance I walk, and the amount of time I continuously stand. I have to manage the weight of my backpack carefully and allot more time to get to class. If it is a rainy day or the terrain is uneven, I have to be even more cautious.

As a teenager with muscular dystrophy, it is a poignant truth that I face some daily challenges that do not affect my peers. Most of my peers can effortlessly run when late for class or stand in a long line at the cafeteria. I have difficulty doing these tasks and have to accept these inconvenient limitations. Having this diagnosis as a young person is deeply unfair because I am often excluded from enjoyable activities due to environmental barriers or ableist attitudes.

I have to draw attention constantly to inaccessible spaces, environments, and activities. This is exhausting and sometimes prevents me from being carefree and spontaneous. It has taken me some time to accept muscular dystrophy as part of my identity. It is an ongoing journey to fully embrace it so that I can extend my unique experiences and lessons learned to derive hope and to create change in the world around me.

In accepting muscular dystrophy, I am now beginning to free myself of self-imposed barriers. I no longer prioritize being able to do everything independently. Rather, I want to do the things most important to me with the help of strong mentors, my family and social networks, and by working to be in the right environments and institutions. In navigating life with muscular dystrophy, I have learned so many critical lessons.

There are life circumstances that I can control and those that I simply cannot. I cannot change my diagnosis, yet I strive to maintain stable health by investing effort into healthy habits, excellent medical care, keeping a growth mindset, and focusing on the many blessings in my life. I have certainly developed strong executive function skills because I have to aggressively manage my time, effort, and stamina.

I juggle many of the same things my peers are doing while simultaneously fitting in daily exercise, regular appointments, and physical therapy. I have learned to be intentional and fearless about my goals and dreams and take nothing for granted. The experience of muscular dystrophy is fatiguing, and yet has taught me urgently to live a life of daily resilience with discipline and hope.

I have had to balance the frustration and exclusion I encounter with keeping an optimism that silver linings exist at every turn. As one example, I was very lucky to benefit from a landmark clinical research trial at Stanford University. Participation in this 5-year trial was a lifeline for me and also changed the trajectory of my symptom progression. This has shown me just how important research is and how impactful it can be to change someone’s life.

I also have come to appreciate that my worldview is worthy, distinctive, and immensely powerful. I know personally the transformative impact of universal design on creating accessible physical environments, learning spaces, and products. I realize that I have an emerging capacity to contribute in ways that others cannot.

Muscular dystrophy has posed formidable challenges for me and yet has failed to rob me of my enthusiasm for life and has certainly not limited my aspiration in any way. It has made my goals and dreams emerge crystal clear, deepened my love for my family, and increased my grateful appreciation for the world-class care I have received. I have learned about collaboration and being solution-focused because none of us can fight all our challenges alone.

I have begun to actively think about how I can use my intellect and fierce motivation to change the experience of all persons with muscular dystrophy. I am aspiring to study computer science in college and hope that I will be able to use my growing understanding of AI to design intelligent robots and adaptive technology.

I also plan to learn everything possible about precision medicine and use machine learning to possibly help identify precise targets for gene therapy in muscular dystrophy. I plan to live my best life and look to a future where life with muscular dystrophy will be less daunting and more fulfilling for many like me.

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