I’m at a crossroads in life, once again

Starting last week, I’ve been trying to get my life back on track after enduring a few difficult months. As I recently shared, life has been challenging since I left my job in April.

Then, in May, I faced an unexpected hospitalization, and June brought relationship tension. In July, my mental health issues resurfaced, exacerbating my distress.

Not having a regular income for three months made me anxious about the future, as financial independence is crucial for my well-being. I rely on a wheelchair transport service for my weekly theater lessons and rehearsals, adding to my financial stress.

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I’m also anxious about an upcoming theater performance in November, the main deliverable for the first year of my two-year acting program.

Playing the role of a friend from the muscular dystrophy community has proven more challenging than I had expected. He reminds me of my late brother, Isaac, and the two were born a year apart. This makes it difficult for me to embody the character during rehearsals.

Working on the script with my director, co-trainer, and creative enabler has also been challenging. Still, I’ve learned a lot from her experience as a thespian. My emotional vulnerability has been a significant obstacle to fully stepping into the character’s shoes.

As my director emphasizes, acting requires us to feel what the character feels on stage, making the performance believable for the audience. Acting is about living truthfully in the given circumstances, but I’ve struggled with this due to my current emotional state.

While I share the same condition as my friend, our personalities differ significantly. There is no such thing as an “average” person with muscular dystrophy. While I’m proud of my disability, we’re not defined by the perception of our condition in the healthcare industry or society in general.

Life with muscular dystrophy involves more than suffering; we can also enjoy things like watching the Olympics and achieving goals, such as becoming a playwright. Like everyone else, we dream of being in a loving relationship and having a life partner. Our circumstances may differ, but deep down, we’re just like everyone else.

The objective of my performance is to normalize what happiness can look like for someone with muscular dystrophy. While I can’t disclose specific details of the script due to privacy reasons, I feel burdened by the challenge of portraying this person and our community in general in a relatable way to those who don’t have muscular dystrophy. How can I ensure they’ll understand us instead of judging us?

I’m privileged to play someone who is like me. Still, it’s a burden only I can bear, as I’m the only ensemble member with muscular dystrophy and know what it’s like. To prepare for the role, I’ve read my friend’s memoir about his experiences with life and love.

Finding renewed hope amid uncertainty

Despite all the work I’ve done recently, something feels missing inside me. While I got into my first relationship last year, I currently find myself at a crossroads, just like two years ago, when I started writing this column. I’m unsure about what to do with my life. Even though I’m more involved in the community than ever, there’s still a void within me that I desperately need to fill.

Contrary to what some might think after reading my column, I still need to get it all together. I’m still a work in progress, figuring out my place on Earth.

Last week, I started taking antidepressants again to manage my obsessive-compulsive thoughts and anxiety after seeing the psychiatrist I’ve been going to for four years.

Maybe the best way to succeed is to be true to myself on stage, which I’m not used to doing when performing live. My last rehearsal was better than expected. Now that I’m closer to being ready to perform in November, I’m not dreading the opportunity as much. This could be the catalyst I need to get started again.

I don’t know what the future holds or if I’ll even be able to perform, but one thing is certain: I’m not throwing away my shot at redemption.

Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.