MG is not the end of the world, but more people should be aware of it
My twin brother hopes this column will help others feel less alone
“To acknowledge another is to paint strokes of kindness on the canvas of existence.” I was unsuccessful in trying to find the source of this quote, but I like it a lot. As human beings, we want acknowledgment of our ambitions and achievements, as well as our struggles. I write this column not only to acknowledge how my twin brother, Aaron, lives with myasthenia gravis (MG), but also to create more public awareness of the disease.
Aaron was diagnosed with MG in 1999 and had thymectomy surgery in 2000. Our family, especially me, didn’t know how to cope with it then, and so much was left unsaid. Aaron and I are only now discussing how MG has affected his life, 26 years after his diagnosis.
I am an expatriate living in Manila, the Philippines, while Aaron still resides in New York City, our hometown. These online conversations are extra challenging because they are so digitally impersonal. I’m more than 8,500 miles away from Aaron as we’re having hard discussions about MG that should’ve occurred long ago.
I’m happy we’re doing it, though, because Aaron has long dealt with MG silently, which was unfair to both of us. Writing these columns helps me a lot, especially with my sense of survivor’s guilt. But what does Aaron think about my columns, which detail his personal life and medical condition, after all these months?
Aaron wants more people to know about MG
“I love the column,” Aaron said.
“Why?” I asked.
“Because I know now that I wasn’t the only one with [MG],” Aaron replied. “Also, it’s nice to know that my story might help others. Having MG is not the end of the world.”
I paused before reacting. Aaron has made that comment many times before, but I never fully acknowledged until now what he meant by it.
“Has it ever felt that way to you?” I asked. “Did having MG ever feel like the end of the world?”
“At first,” Aaron said. I tend to be verbose, but I’m a writer. Aaron is good at saying a lot with a few words.
“Some days, I still get mad,” Aaron continued, “but it’s not the end of the world. When you send me your columns, it feels good to know that, and I’m glad it helps others.”
I usually send Aaron a link to my columns, especially when there are comments from readers. This was great to hear, but it amazes me how much I still have to learn about Aaron and his condition.
The thought of Aaron being angry is odd to me. He had to learn to control his anger decades ago, as stress and anger worsen his MG flare-ups and muscle weakness. I recently learned that Aaron still experiences bad flare-ups from time to time.
Aaron has dealt with so much in silence. Maybe it spared me suffering to consider my twin as this ultra-chill, Zen-like dude without acknowledging how infuriating it must be for him to refrain from anger in order not to exacerbate his symptoms.
“What do you hope this column will accomplish in the future?” I asked.
Aaron paused for several moments before answering.
“I hope that more people become aware of MG — that people who don’t have it will learn that it exists.”
I had to acknowledge that the conversation might’ve been getting too deep; Aaron started answering questions in short phrases again, so that was it. I replied that the world is cruel, and some people are only receptive to learning about circumstances that they’re personally affected by.
As twins, we always use comics and geek culture to distract ourselves from uncomfortable things, so we switched topics and discussed how we both hated the movie “Captain America: Brave New World.” It’s basically a sequel to 2008’s “The Incredible Hulk.” Plus, we didn’t feel that the Marvel Cinematic Universe had properly set up Sam Wilson to be the new Captain America.
I hope that as I continue my columns, Aaron and I succeed in getting more people to acknowledge MG and those living with it.
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.
About the Author
Basel
Very Helpful. Thank you both!
Jonathan Autore
Thank you for writing about Myasthenia Gravis and helping your brother to reach out to others to ... help other people who have our disease Myasthenia Gravis ... both Ocular and Generalized MG ... as well as the VERY CLUELESS MEDICAL COMMUNITY, that MG patients have to deal with.
My journey with MG has been fairly recent ... compared to your brother's longer journey. I first started showing my symptoms on July 25, 2019 ... but it took me 8 months of suffering and worsening MG conditions ... before i was finally diagnosed by a very intelligent and observant third floor nurse on March 24th, 2020 at my second of five 2020 hospitals. I live in the Phoenix Arizona area, and was born and raised in Minneapolis. My fraternal grandfather arrived at Ellis Island New York, when he was only 16, following his three older brothers on ocean liners from the Bay of Naples. One by one they came over, and sent money back home, so the next brother could come over and seek his future ... before the clouds of WW I arrived.
For eight months, two hospitals, and countless referrals ... no one could diagnose my MG disease and all its 17 or 18 symptoms. Even three hospital neurologists and two eye doctors could not diagnose my disease ... even though it was in their medical fields of expertise. Many will say ... that when you are finally diagnosed CORRECTLY, you enter a period of DEPRESSION. That never happened to me. When I was finally diagnosed by that nurse, she went to her hospital supervisors and explained what MG was ... so that I could get two neuro-consults, six AChR antibodies tests (I was HORRIDLY SERO-POSITIVE with very off the chart, high numbers), 5 days of IVIG treatments, and the meds that I would need to survive to today.
I was not depressed. I was thrilled that there was finally a trained nurse, who recognized my disease MG, and really LISTENED to the symptoms. She did not BLOW ME OFF, or call me TANGENTIAL or a DIFFICULT HISTORIAN. She advocated for me at her hospital ... so that I could recover. I now had a NAME for my disease ... and she printed out 4 pages from WWW.UPTODATE.COM to give me ... so that I would know what I had and what I needed to do.
My biggest problem was that no one knows what MG is. The Phoenix area is full of doctors, who can not diagnose their way of of a paper bag. So I have joined four MG support groups, who have monthly ZOOM meetings, where we share our information and our problems ... so that we can survive and be our OWN HEALTH QUARTERBACKS ... when we meet another CLUELESS MEDICAL "PROFESSIONAL" and try to explain our disease, our meds, our symptoms, and what meds (about 200 or so) that we are not allowed to have, as they would only worsen our symptoms, or counteract the meds that we must take to stay stable. I am still in my VENTING STAGE, trying to spread awareness of MG. So THANKS SO MUCH ... to you and your brother ... to spreading information about MG ... So no one else ... will have to suffer undiagnosed for 8 months, 100 months, or even more!
Thanks, Jon