Jade Muttamara
Nov 5 · 4 min read

“Adapting” to Myasthenia Gravis

Note: I wrote this 9/21/19 but finally had the nerve to publish this today.

I’ve had Myasthenia Gravis since I was 13 years old. I started experiencing ocular symptoms when I was 12, then the severe “floppy ragdoll” arm/leg symptoms hit when I turned 13. I couldn’t keep up in ballet, couldn’t hold up the violin, couldn’t bike uphill, and couldn’t run more than 15 seconds because my legs would collapse beneath me. I hid this from my parents for a few months; I was too young to articulate what I was experiencing, it was too unusual and no one on TV or around me went through it. Finally, one day in the 8th grade, I had enough of my legs collapsing beneath me and the double vision. I broke down to my mom in tears and she immediately took me to the doctor. After about a month of tests (all the needles!), and the intense moseying into medical literature from my awesome nerdy relatives, the doctors were finally able to diagnose Myasthenia Gravis. One of the first-line treatments for MG at the time was to remove the thymus gland (thymectomy), so I immediately had that done. The thymectomy didn’t help at all (thymectomies help some myasthenics, so I don’t wanna knock it). Around this time, thanks to my family doing some sleuthing, I was able to see a great neuro in New York.

I suffered from ocular and overall muscle MG for only a few weeks at 13 before starting the medication (Pyridostigmine). The medication worked its magic and I was suddenly able to mostly keep up with all my friends. Intense ballet and effortless violin were off the table—but I could sit at lunch and chat with the rest of them. I looked mostly normal. Just don’t force me to climb a mountain or run, is what I mostly said.

Newly diagnosed at 13/14, I still wanted nothing more than to fit in and be “normal.” I learned to pass off my physical limitations to my friends as “silly lameness” and used the term “introvert” to my advantage when it was harder than usual to maintain eye contact. A shy quiet girl my whole childhood, I learned to pass off MG as a more intense version of introversion.

I didn’t realize this, but I’m starting to understand it now: the MG had a more profound effect on my life than I realized. I passed off my struggles as some type of quirk, but it sucks not being able to keep up. Right before the MG kicked in, I was top of my class (and I didn’t have a tiger mom…it was honestly fun back then).

Even though the medication helped me appear normal, I didn’t feel normal—and I didn’t tell anyone.

As luck would have it, MTV’s Daria was popular and so were slackers and grunge. My low energy and appearance of malaise fit right into popular culture at the time. I hung out with the ‘cool kids’ that got into raves, listened to too much Nirvana, carried around the book Prozac Nation, and entered therapy for “depression.” It was a nightmare for my parents, but I felt like I fit in.

I think because I fit in somewhere, I wasn’t able to really see that my “droll” brain fog and malaise could be bad. I didn’t want to notice.

High school and college were some type of “alternative 90s girl” blur.

Anyway, looking back at all this, and even more recently, I don’t think it’s okay that I should feel so disconnected due to failed eye contact and other physical limitations. I’m not saying I should be able to climb a mountain (though that’d be rad)—but in the very least, I’d like to be in a group without experiencing double vision or the horrible anxiety that goes along with it. I want to walk fast and far with everyone.

I’m sick of my “adaptation” and want to fight for more of my physical health.

It’s been horrible because my body feels like a flesh cage recently. I experience a lot inside my head but can’t express all that energy due to physical limitations.

Jade Muttamara

Written by

Myasthenia Gravis, AIP, Paleo

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