My twin has MG, and I have survivor’s guilt

Unearned guilt is one of the most useless emotions in the world. Guilt never has a full belly. It feeds eternally upon itself and adds to what’s there. Unearned guilt glues itself to the soul and wearily weighs it down. As the Depeche Mode song “Halo” says, guilt is like inverted halos shackling the feet, dirty and without a glow.

My twin brother, Aaron, was diagnosed with myasthenia gravis (MG) in 1999, when he was only 24. In response, I’ve been dealing with survivor’s guilt ever since. I honestly didn’t know, acknowledge, or fully appreciate that fact until recently. Someone mentioned it to me in an offhand remark, and the idea blew my mind.

Weighing myself down this way is not fair to my needs or my twin’s, and it doesn’t help our relationship.

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My twin and I are middle-aged now, but MG robbed him of his mobility almost 25 years ago. It’s been heartbreaking to watch. Aaron used to enjoy athletics, for instance, and loved exercising and lifting weights. (I see exercise as torturous.) He enjoyed crafting a muscular physique. But in the early days after his diagnosis, he struggled to button his shirt and tie his shoes because the disease dramatically weakens the muscles in limbs and fingers. I had to watch him relearn those basic childhood skills.

In the 25 years since he was diagnosed, I can count on one hand how many times he discussed the possibility that he might one day struggle to breathe or swallow food. It scares him, and it scares me.

Aaron used to be the most stubborn guy on the block. When he was young, he was quick to anger, as happens with many people. But I haven’t seen him angry in decades, not since the diagnosis. I can’t relate to having a disease rob you of your mobility and God-given right to get angry when needed.

Stress and anger make MG worse. I’m ashamed to admit that I didn’t realize until a few years ago how Aaron had to adopt a Zen-like approach to care for his disability.

We’re connected, yet different

My twin is 11 minutes older than me. I shared a womb with him, and we’re connected. When we were children, for example, I tripped and slammed my head into a wall, and Aaron woke up screaming at that exact moment. I’m not going to tell you that we had a made-up language we converse in, but for 24 years, our connection defied explanation.

Myasthenia gravis didn’t destroy that link, but it has altered it. Yes, I have survivor’s guilt. I don’t wish that we were both diagnosed, but I do sometimes wish I could absorb it from him, like in a comic book or sci-fi film.

One thing I learned in processing my survivor’s guilt is that I must focus on my sensitivity to Aaron’s needs. When he was diagnosed, I’d send him articles about new myasthenia gravis research and experimental treatments. But it takes decades for new drugs and therapies to be approved.

I also had to accept that myasthenia gravis is, for now, incurable. There’s nothing wrong with inspiring hope, but most people don’t even know this disease exists, much less the latest in experimental research. Unwittingly, I’d been trying to inspire false hope in those early days, when I knew nothing. I had to stop doing that. I needed time to learn to become an active listener and more flexible to his needs.

“Myasthenia gravis” is sort of a portmanteau of Latin and Greek words that translate to English as “grave muscle weakness.” I needed time to realize that if Aaron canceled plans or didn’t want to hang out, he was probably struggling with muscle weakness.

What I’m trying to say is that instead of wrapping myself up in survivor’s guilt all this time, I should’ve focused on becoming an advocate earlier in his disease history.

Survivor’s guilt is a useless emotion that shackles my ability to connect better with my twin. I’ve only just realized it. I’ll now try to do away with it and focus on advocacy, partly through this column. As a nondisabled person, I aim to make as many people as possible learn about myasthenia gravis.

If you’re also a nondisabled person in a similar situation, my advice is to process your guilt and then let it go. Unearned guilt will affect the connection you have to your loved one, who’s already suffering beyond many people’s ability to relate.

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.