My twin often considers the worst-case scenario in his life with MG
How my brother copes with potential complications of his disease
American writer William Arthur Ward is believed to have said, “Feeling gratitude and not expressing it is like wrapping a gift and not giving it.”
I’m not grateful enough for my relatively good health. I’m overweight, don’t exercise enough, and use the stress of my freelancer life to distract from this reality. I’m American, but live in the Philippines, a poor but developing country.
There are several Western-world-grade hospitals in the larger cities, such as Manila, where I live. However, they don’t compare with the medical facilities of my hometown, New York City. I take a lot for granted. I’m one severe medical emergency away from requiring top-notch care in a developing country. I think about this worst-case scenario often.
Every week or so, I chat with my twin brother, Aaron, who has myasthenia gravis (MG) and lives in the U.S. We’ll be 50 next year, and we talk about almost everything. We’ve had maybe two serious arguments in our lives, no exaggeration. While we’ve discussed a lot of topics, many important thoughts have also gone unsaid.
Aaron was diagnosed with MG when he was 24. There’s still so much I don’t know about how he dealt with it internally.
So during a recent online chat, I asked Aaron what he dreads most about having MG. He said his doctors warned him that he might lose the ability to swallow or breathe.
Aaron faces the worst-case scenario with positivity
During our latest chat, we wrapped up our discussions and reviews of the comics-based show “The Penguin.” I’m trying to get Aaron to watch “Dune: Prophecy” with me, but he’s never been a fan.
He asked me about my health. I told him I was OK, just didn’t get out or exercise as much as I should. I also said I like my life in Manila, even though it’s stressful, but I dread having a serious medical emergency here.
I then asked Aaron a few questions about MG, including what he dreaded most.
Aaron paused for a moment. He said his doctor told him that some MG patients develop severe muscle weakness in their diaphragm, throat, and torso muscles. That could cause him to have increased difficulty swallowing and breathing as he ages.
Aaron has mentioned this issue several times before, but I never followed up on it. Struggling to breathe is such a dread-inducing thought to me; how does he deal with it?
Was I protecting myself by not asking these questions? And why am I only having these deep discussions with him now after moving more than 8,000 miles away?
I asked Aaron if he’s in danger of this happening to him. He told me he has regular medical checkups and was told last month that he doesn’t face this issue right now.
I asked him what the worst-case scenario would be for him if he did experience these complications.
He calmly said, “Well, if I get worse, I may have to walk around with oxygen tanks because my lungs will be too weak to work on their own.” Aaron then added, “Or I may get stuck in a hospital because I can’t move on my own anymore.”
What a horrible thing to consider. I asked him how he could talk so calmly about it. He said he focuses only on what he can control in life and stays positive. I’m aware that people with MG must avoid stress and anger to prevent flare-ups, but it sounds so hard to deal with.
I don’t want to be misunderstood. I’m not saying I’m grateful that I don’t have MG; if I could, I would absorb it from Aaron. He told me he’s so grateful for life, music, exercise, comic books, anime, video games, and geek debates with me.
I should be more grateful for my health. My twin still has an exercise routine and goes to the gym when possible. His doctors told him not to exercise for a month after his recent strabismus surgery. Aaron complained about it and can’t wait to hit the gym again.
I abhor exercise, but I need to get into the habit now more than ever. The last thing I need is a medical emergency in Manila from poor health.
I have to find an exercise routine I can look forward to, as Aaron does. Our conversations have made me realize I need to be more accountable, positive, and grateful for my health. Unlike Aaron, any worst-case health scenario I might encounter would be all self-inflicted if I don’t take action.
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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