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A Letter to Myasthenia Gravis, on Our First Anniversary Together

No, this is not some sappy note to the love of my life. This isn’t a tale of romance or an ode of affection and adoration. It’s just a milestone. It’s been one year as an MGer (what our community calls someone living with myasthenia gravis). You can’t catch MG like a cold or the flu; you’re born with it. So my MG has been in here all along, waiting for the moment to strike. It’s just been one year that I’ve officially been labeled as an MGer.

If I had to actually write something to my MG, I imagine it’d be quite reminiscent of the spoken letter from Alfalfa to Darla from Little Rascals. Just imagine it: “Dear Darla MG, I hate your stinking guts. You make me vomit. You’re scum beneath my toes.” Short, sweet and straight to the point. OK, maybe not those exact sentiments, but I can definitely relate.

Dear Myasthenia Gravis (MG),

I can’t believe I’m writing this. Do you know what today is? It’s our anniversary. (Cues Toni Toni Tone melody to play in the background). What did you get me? Oh, a symptom-free day? How sweet of you. You shouldn’t have. Oh no wait, you most certainly should have. I’ve heard many people say that the first year is the hardest. Man, they were not lying.

Like any great antagonist, you came into my life without warning. First, you did sporadic pop-ins and then decided to stick around more permanently. I remember it like it was yesterday. All the tests, all the appointments, all leading up to that moment when I heard the doctor say “It’s myasthenia gravis.”

You’ve made this past year of my life borderline indescribable. You have been a worthy opponent to say the least, pushing me off my life plan and giving me a good run for my money. Even when I tried to ignore you and continue to “do me,” you made it clear that you were in fact here to stay. Those first three months were excruciating. The more I fought it and ignored the boundaries you were establishing, the harder you fought back, bringing on new and more severe symptoms. But like Steve Urkel did to Laura Winslow, you wore me down.

I think I’ve experienced every emotion under the sun. The confusion of what exactly you were. Hell, I couldn’t even pronounce your name correctly for a while let alone be able to explain you to someone else. The hopelessness of having something incurable. When you hear the words “auto immune disease,” and “incurable” in the same sentence, my mind automatically fills with fear. The fear of what having MG meant and the impact it would have on my life. What about my life plan? Will I be able to work, drive, have kids? The anxiety from never knowing how I’m going to feel day to day, hour to hour, second to second. Every day is like playing a game of “Symptom Roulette.” The anger and frustration of not being able to do what I once could do. The self-pity and hatred from peering into a mirror and barely recognizing myself with droopy lids and looking like a long lost Klump family member.

I’ve experienced the very real embarrassment from my wide range of symptoms and side effects — shout out to my eye patch. I’ll never forget the day I literally fell walking to the mailbox. The love from an amazing support system who makes sure to check on me and my progress. The excitement of being able to do some of the things that I couldn’t do during your reign — like make it to my room without stopping for a rest. The sheer joy of coming down off medications.

I want you to know that while I most certainly could have gone through the remainder of my life without you, I think I have grown to be tolerant of you for these reasons. You remind me not to take myself so seriously, to let go a little more, to realize that even the most elaborate plans can falter by unforeseen circumstances. You’ve forced me to self-reflect more, to ask who I am and what do I really stand for. You’ve made it easier to discern the people who are truly down for me and those who are just extras that need to be clipped. While your name implies weakness, I feel through you I am becoming a stronger woman.

All things considering, I look forward to the rest of our lives together, because for better or worse (or until they find a cure), I’m stuck with you. I’ll do my part to respect you and your position in my life, if in turn you respect my desire to still live a magnificent life. Please know that although you are a part of me, you are not all of me. You do not define me or my life; you simply give me more meaning. I plan to show you, the rest of the world and most importantly myself, that not even MG can stop MG (me).


This story originally appeared on Is Was Will Be

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