My twin’s MG infusion reminded me of the power of being present

I had just started a video call with my twin brother, Aaron. I live in Manila, Philippines, and he still resides in our hometown of New York City. It felt good to see him.

I was pleased to see that the strabismus surgery he underwent to correct his once severely misaligned eyes was so successful. However, Aaron seemed a little distracted as we spoke. He maneuvered his phone so I could see that a visiting nurse was in his living room.

There was an infusion device stand next to the living room table, and the nurse was prepping some materials. I have been writing about Aaron’s life with myasthenia gravis (MG) for over a year now, and I was unaware that he needed infusions. I don’t know why, but I felt like I was intruding.

I told Aaron that we could chat later, as I didn’t want to interrupt. He looked at me with a perplexed expression, but said he understood.

A few moments later, Aaron texted me. “Dude, I wanted you to see my infusion for my MG.”

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I still don’t know why I did that. It was almost like an emotional reflex. Instead of being in the moment, watching Aaron get prepped for his infusion, or even grappling with the fact that I knew nothing about his treatment, I closed myself off.

It made me think about how our family didn’t talk about Aaron’s MG for a long time. For more than 25 years after his diagnosis, Aaron kept most of his feelings inside. Still, it was a two-way street. It’s been hard for me to confront how much MG took away from him.

I apologized to Aaron. He said it was OK and explained that he gets infusions of Soliris (eculizumab) every other week. The medication decreases the severity of his MG symptoms and alleviates his muscle weakness. Aaron takes his other meds orally.

Aaron said we should do another video call during his next infusion so I can sit through it with him.

I asked how long he’s been getting infusions, and he said about a year now. His doctor arranged for a visiting nurse service, so Aaron doesn’t have to travel to an infusion center every two weeks.

I asked Aaron if his condition had gotten worse. He texted me, “LOL. No.” He said that infusions are fairly normal for people with MG. I know they are; it’s just hard to see my twin brother as an older guy who needs them.

Aaron told me that the process takes about an hour. He sits at the table, the nurse turns on the machine, and the automated infusion process takes over. The nurse must be present throughout the procedure. This must have been a hard adjustment for Aaron, who’s a homebody and a private man.

Aaron already had to accept that he’d need MG medication forever; now, he must adapt to biweekly infusions as well.

He told me that he gets a bad headache after each infusion, but otherwise, they’re not too bad. Still, I get the feeling that Aaron dislikes these treatments — but what choice does he have? I felt even worse about cutting off the video call when Aaron was trying to share this experience with me.

It’s enlightening to learn about the products he uses to make life with MG easier or how he manages anger. However, I realized that the most important thing I can do for him is to just be there and listen. I didn’t do that.

So I am scheduled to see his next infusion. It’s an appointment I won’t miss.

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.