Between my brother with MG and me, I’m the one who needs work
My twin brother's life is challenging, but he has a Zen-like demeanor
The most crippling disability in the world is the mindset of nondisabled people who define people with disabilities by their physical limitations, refuse to view them as full human beings, or ignore their disabilities for self-serving purposes. I’ve been guilty of the latter offense for a long time.
I know that my twin brother, Aaron, has myasthenia gravis (MG) — I’ve never forgotten it — but I’ve never in my life called Aaron “disabled.”
Even writing it in this context feels like a brotherly betrayal. I don’t define Aaron by his disability, but trying to ignore it for my own emotional purposes deeply trivializes his daily difficulties while living with this condition. Not accepting that reality to spare my feelings, or to view Aaron as only my twin, isn’t fair to him or me.
The impact of his diagnosis
Aaron and I are fraternal twins and proud South Bronx natives. I was always more introverted than he was, and I was chubby and not athletically inclined. Aaron, on the other hand, was more outgoing and loved to exercise. As a teenager, he’d buy exercise VHS tapes and work out to them. We both loved comic books, sci-fi and horror movies, and cartoons, but we had and have vastly different personalities.
In 1999, when we were 24, Aaron was diagnosed with MG. After numerous doctor appointments and the 2000 removal of a noncancerous growth from his chest, Aaron’s physical mobility diminished in life-altering ways.
Myasthenia gravis is a rare disease that causes muscles to become weaker than normal during use. It weakens the muscles that control eye movement, limb movement, and breathing. Aaron’s limbs and fingers would become weak from time to time. His eyeballs would become cross-eyed or fixed in place for days or weeks at a time.
As a child, he, like me, was prone to tantrums. Now he has a Zen-like command of his emotions. I haven’t seen Aaron become angry in decades. That’s partly because he realizes stress is a major trigger for his muscle weakening and extreme fatigue in MG.
I don’t put my twin on a pedestal, nor do I pity him. Life isn’t fair, but he’s stronger than I am. When I got divorced, I poured all of my emotional issues onto him as if he were a therapist. I’m now living in Manila, in the Philippines, striving to realize a small business dream, and still I talk to him about my issues.
He may soon undergo a medical treatment to correct his strabismus, or misaligned eyes. I was strongly against it because I worried the surgery might temporarily address the issue, but not the disease — so the problem could arise again. But it’s not my decision to make. Worrying that the procedure might be a waste of time doesn’t trump his need to be alleviated from the difficulties of living with this disease.
Most importantly, Aaron doesn’t cause me stress with every problem he has. MG doesn’t have a cure, so my brother lives his life as best he can. He sees his doctor regularly and is always optimistic. He has a hard time dealing with this condition, but he never complains to me about it.
I’m a pessimistic person. It’s a draining personality trait for anyone, but it’s certainly not fair to expose someone with a stress-triggered ailment to it.
As a close relative of someone afflicted with MG, it’s been emotionally traumatic to watch what this disease has done to my twin. That’s why I’m writing this column: to bring more awareness to this rare disease.
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
Shauna
Hi Allen. As a 39 year old who was previously very active and diagnosed this June, I can very much relate to your brother and his approach. I appreciate you sharing not just his experience, but your perspective as his brother. Please keep writing. It's helpful for us, and I am sure for you as well.