My twin’s Soliris infusion makes me confront the reality of MG
I want to make more of an effort to support my brother through his treatment
I had promised to video call my twin brother, Aaron, as he received a Soliris (eculizumab) infusion, but I felt a lot of anxiety as I began the call. It wasn’t that I didn’t want to be there for him. Instead, I knew it would be a blunt visual reminder of his disability and how it affects him.
For more than 25 years, my family barely acknowledged Aaron’s myasthenia gravis (MG) diagnosis, which he received when he was 26. I remember my brother as he was during the first 25 years of our lives — before MG. Maybe that’s how I always want to remember him.
Perhaps that’s why I was so anxious about watching Aaron’s infusion. Interviewing him about the MG-proof products he uses, how he deals with his anger, or his exercise routine lets me be almost detached from his situation. But watching his infusion means having to witness how MG has irrevocably changed my brother’s life.
Confronting my discomfort
Aaron was in good spirits as we began the call. I now live in Manila, in the Philippines, and felt a twinge of homesickness upon seeing the old living room in New York City. Aaron introduced me to his visiting nurse and moved his phone like a film director so I could see the nurse prepping the needle. The infusion machine was near the table. Aaron would be having an infusion of 200 mg of Soliris, a medication that can help reduce the weakness he feels.
I recently learned that he’s been getting infusions for about a year, starting right around the time I began writing this column.
Aaron is a homebody who likes his privacy. I knew the call would be uncomfortable for him, and he must’ve felt a bit like it was an intrusion. It was tough to watch my twin hooked up to a machine, be vulnerable, and require life-saving medication — even from the other side of the planet.
It took an hour for the infusion machine to do its thing. We talked throughout it — about the chances of the New York Knicks winning the championship and comic books. There were a few comfortable silences.
Aaron told me a previous nurse hooked him up to the machine and never came back, so he got a new one. One of our sisters had to remove the needle from Aaron’s arm that time.
About 45 minutes into the procedure, he began to get a headache, a common and unavoidable side effect of the infusion. Aaron motioned to the top of his head with his hand to describe the headache and how it radiated outward.
I could see it meant a lot Aaron to have me with him as he received his infusion. For so long, he’s kept all these feelings to himself. Perhaps that was too convenient for me.
The infusion machine abruptly stopped. I had to go. Aaron thanked me for hanging with him. I thanked the nurse and promised Aaron I would video call him at least once a month for his infusions, maybe more often.
Just interviewing my brother has been easy, almost like I was an advocate, but with no sense of attachment. I want to be more in the moment as my brother experiences his life with MG.
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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