Why being able to drive isn’t a priority for my twin — or for me
My attention is drawn to other matters, and the same is true for my brother
“Failure is not an option. Winning and learning are the options.” I don’t know who said that quote, though it’s been attributed (with slightly different grammar) to the neurologist and writer Debasish Mridha. But it often inspires me in life. There are so many things I’ve yet to do, but many of them can wait because they’re not now a priority. I know I’ll get around to them.
I’ve never owned a car, for instance. I’m from New York City, and while many people there do have cars, they’re an expensive (and often inconvenient) luxury unless you have a family or job that demands it.
A good friend of mine offered me an older model car for free in the mid-2000s, when I was in my late 20s, but I would’ve had to go to Colorado to get it and then drive it back to New York City. At the time I was newly married and barely able to pay my rent and bills, so I just couldn’t afford to get it, pay for the gas to drive it back, or pay to maintain it in New York City.
Remembering that and similar stories made me think of the options my twin brother, Aaron, now has in life. He was diagnosed with myasthenia gravis (MG) in 1999, when he was 24 years old. A lot of options that I take for granted ended for him at that time. Instead, he had to get a life-improving thymectomy, something I’d forgotten about. The muscle weakness from MG caused him to have ptosis, or droopy eyelids; severe eye misalignment; and an inability to move his eyes from side to side.
Aaron had successful strabismus surgery last year to rectify the alignment issue. Still, I thought more about owning a car, one of the many accomplishments most young men want, perhaps so they can fit in with their peers. Does Aaron regret not driving, and does he want to do it in the future? What options for recreation and fun does he afford himself now?
That was a focus of our recent online discussion, with him in New York and me in Manila, the Philippines, where I live.
‘It’s not a priority now’
“Do you ever miss driving? Would you do it again if you could?” I asked. Aaron and I had taken basic driving lessons as young men, but Aaron had to stop after age 24.
“I would like to,” Aaron replied, “but it’s not a priority now.”
“You know, you probably still could if you wanted to,” I countered. “I looked it up. You would have to take extra tests, have a restricted license, and never drive during flare-ups.”
I wonder if I’m helping by saying these things. Surely he’s thought about them.
“Yeah,” Aaron said. “It would be nice, but no, I also can’t turn my eyes left and right.”
I’d forgotten about that, but Aaron didn’t talk about his MG issues for a long time; only recently have I been asking about them. In this case, Aaron dealt with his severe eye misalignment for decades, often wearing sunglasses to hide it. I only recently learned that he still has problems with double vision, even after his recent surgery.
“Dude, I forgot about that,” I sheepishly said. “Still, all that means is you might get a restricted license.”
“Maybe,” Aaron said.
I recently learned that Aaron’s MG flare-ups intensify during heat waves. Is it insensitive for me to ask about these matters?
“Are you worried about having muscle weakness in your legs and feet during an MG flare-up while driving?”
“Yeah, I don’t know if I should chance it, but who knows,” he said.
I wonder if these questions only remind him of what he can’t do anymore because of MG. Still, am I failing to acknowledge his reality with MG if I don’t ask?
“OK,” I said. “Tell me what you look forward to doing now, if not driving.”
“I love exercising when I can,” Aaron said. After his recent strabismus surgery, Aaron was restricted from exercising for a month, which really bummed him out. He continued with the things he looked forward to doing: “Video games,” he said, “and playing with my RC [remote-controlled] cars when I can.”
I completely forgot that Aaron was into RC cars. He’s an avid gamer, but he loves RC cars just as much.
As we ended our conversation, Aaron said that he’d made his peace with not driving long ago. He’s OK with it, and he has other things to do.
I feel odd for wanting him to drive so much, even though I haven’t made it a priority, either. Here in Manila, the traffic is really bad; still, I don’t count out driving in the future. Like Aaron, I don’t feel that my not driving is a failure; I just prioritize other wins and learning from my mistakes, in keeping with my opening quotation.
I feel bad that Aaron will be limited if he ever decides to drive, but what’s important is that he’s been prioritizing his health and the activities he can control, which is all that matters.
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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