My twin explains myasthenia gravis and heat intolerance
I never knew that hot weather made him unable to function
When I was a toddler, I tripped and fell into a wall. The impact caused a small wound on my forehead, and I cried out in pain. My twin brother, Aaron, who was napping at the time, woke up wailing, as if he were also in pain.
My family told us this story when we were kids. Obviously, I was there, but I don’t remember the context since I was so young. Still, the incident illustrates the connection Aaron and I have as twin brothers. Whether consciously or not, we have an unbreakable connection and understand what the other brother is going through.
It comforts me to believe that story because I feel I know Aaron better than others do, even when things are left unsaid. Whether that story is true or not — I choose to believe it is — it’s become painfully obvious that I don’t know Aaron as well as I think I do.
Aaron has been dealing with myasthenia gravis (MG) since being diagnosed in 1999. For decades, he’s had to endure recurring muscle weakness and misaligned eyes, among other issues. Recently, he had strabismus surgery to correct his eye alignment. Before that, he wore sunglasses to hide it. He’s dealt with all of these issues on his own, and so much has been left unsaid in my family about his MG. Aaron is a private man who tends to say a lot in as few words as possible.
In the past 26 years, we barely spoke about his MG until recently, when I started writing this column. Every day, I learn more about this rare disease. The latest topic we discussed was how hot weather can make Aaron’s MG flare out of control. When it’s hot out, sometimes he simply can’t function.
‘No energy, no nothing’
“The heat makes [my MG symptoms] worse,” Aaron told me. “I feel weak and tired.”
For context, I’m an expat living in Manila, the Philippines, while Aaron still lives in our hometown, New York City. Hearing about this now that I’m 8,500 miles away hits me even harder.
“I never knew this,” I responded. “What temperature starts to make your MG worse?”
“Anything over 90 degrees,” he said. “I can’t get out of bed. No energy, no nothing.”
“I’m sorry to hear that,” I said. “What can you do to counteract this issue?”
“I don’t go out in heat waves if I can help it,” he replied. “If I must go out, I’ll stick to the shade as much as possible.”
“How long does it take to recover after heat exposure?” I inquired.
“Ninety minutes or so under the fan or with air conditioning, if I don’t move around too much.”
“Does intense cold cause the same problems?” I wondered.
“No, the cold is fine.”
New York City gets ridiculously hot in the summer. How often has Aaron dealt with heat-induced MG flare-ups in the past 26 years? I asked him if he had anything else he wanted to say.
“I struggle to breathe in intense heat,” he added. “It scares me sometimes.”
It was heartbreaking for me to hear that. I didn’t know what to say. No one (that I know of) has asked Aaron about these subjects since he was diagnosed. I’ve never heard him speak this way regarding his MG.
I said something about being careful in heat waves and maybe carrying ice packs in the future.
As usual at these conversational junctures, we changed the subject to comic books, including how disappointed we are with the new “Daredevil: Born Again” television series that’s streaming.
I’m grateful to understand my twin more, but I hate what this awful disease puts him through. I also hate these things I haven’t known. I miss the days when all I had to do was trip and hit my head for us to have an instant connection.
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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