Though he can’t work as he once did, my twin stays positive
As I've confronted my failures, I see how his attitude has helped him with MG
Oprah Winfrey once said, “Where there is no struggle, there is no strength.” Others have found their own ways to express this idea. The way we deal with adversity reveals our character. It can betray flaws, but it can also demonstrate strength in overcoming problems.
After getting divorced in my early 30s, I lost my job as an academic adviser and adjunct instructor, as well as my apartment. I had two surgeries to remove nonmalignant skin cancer, dermatofibrosarcoma protuberans, from my shoulder. I moved back home with my soon-to-be ailing mother in the South Bronx. My twin brother, Aaron, and a few other siblings also lived there. I have a large and extended family, so while my life’s meltdown was embarrassing, I was grateful for their aid during my time of need.
I stayed in my mother’s house for just over a decade, from 2007 to 2017. I helped with chores, cooked, and tried developing my freelance writing skills. Still, I was lazy, self-pitying, and self-sabotaging. I didn’t try to help myself as much as live off the grace of relatives and friends. In the early 2010s, I almost sold a screenplay and tried to launch a publishing company. Those failures worsened my confidence levels.
After my mother’s passing in 2017, I moved to Manila, Philippines, to escape the New York cost of living and focus on freelance writing. It’s a career path I should’ve taken seriously much earlier.
When I left, the last person to see me was Aaron. It hurts to recall that farewell even now; I took for granted how much I depended on him for emotional support as my life fell apart. As I embarked on a new life path, however, I didn’t appreciate how Aaron had lost his former vocation to myasthenia gravis (MG) or how the disease limited his life options, but not his positivity.
Being brave
I had many options, but opted to fall apart until I decided “no more” and chose that new path in 2017. Before his MG diagnosis in 1999, Aaron, meanwhile, had been athletic and energetic while working manual labor jobs in warehouses. He used to work out every day.
He now receives government benefits because of his condition. When my life fell apart because of my many self-inflicted injuries, I don’t think I fully appreciated how much of Aaron’s life was sacrificed after his diagnosis.
It was hard discussing this topic with him. I felt awful that I didn’t acknowledge his life before and after MG, especially the end of his working life, until after I had to rebuild my own.
Would it be cruel to inquire about his former working life, which was now distant and unattainable? Or was it worse to continue avoiding hard conversations about how MG altered his life?
“I try to be brave,” Aaron told me. We’re both fans of comic books, sci-fi, superheroes, and horror movies. He loves to exercise when he can, which is not often enough because of flare-ups of MG muscle weakness. Even though he can’t perform manual labor anymore, he said he was filled with optimism by the idea that we could one day launch a comic book of our own.
When Aaron gives short answers, I know the subject is sensitive. A part of me regrets bringing up the topic, but isn’t ignoring it worse? Aaron has ambitions and dreams, and he’s determined not to let MG stop him.
He told me that optimism and positive thinking, along with his hobbies, keep him going. As he’s mentioned several times, what’s the alternative? Maybe he can’t work his old jobs anymore, but he’s always positive about life.
I know Aaron has bad days dealing with MG, but he was always Zen and optimistic when I had to move back home. He always gave me pep talks and tried to bolster my confidence. I feel ashamed that I was so self-absorbed, dealing with the failure of my marriage and losing out on a screenplay deal, that I couldn’t see how fortunate I was.
As we ended this Facebook chat, I changed the subject to the New York Knicks. NBA coverage was removed from my cable package in Manila, but Aaron is a fan and keeps me up to date.
I’ve since pledged to focus on my writing and business plans and make some of the literary ideas I developed with Aaron a reality. Otherwise, all of the times I leaned on Aaron and my family for strength would’ve been for nothing.
Note: Myasthenia Gravis News 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 other 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 Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
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