Figuring Out How to Live with Myasthenia Gravis
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Something to Chew On

Something to Chew On

By Aimee Sears

One of my favorite memories is how Grandma smelled like mint. She kept a pack of Wrigley's Doublemint gum in her purse, and she was always willing to share. I remember riding in the back seat of her car, with the stiff white vinyl seats. Grandma would reach back to hand me that foil wrapped goodness to chew and savor, while the warm Ohio air swirled through the back seat windows. Ahhh, so sweet!


Now imagine any stick of gum, colorful gumball, or cube. The flavor begins vibrant and the texture soft. Over time, the texture hardens, and it gets tougher to chew. The flavor disappears.


You’re left chewing a hard, flavorless lump.


It's still the same gum you started with, but it doesn't resemble it in any way. At that point you're ready to spit it out. 


How does this relate to myasthenia gravis?


Our lives start out like that sweet, soft stick of Wrigley's Doublemint gum. It varies when and how we get our diagnosis and treatment plan. For me, my life was already to the “hard and flavorless” stage when I was diagnosed, as I’d lived for 15 years with the symptoms already.


It was a burden to keep chewing that gum, yet I couldn't spit it out.


I'm now in my 23rd year of living with MG. I have a diagnosis. I have treatments. But I still don't get to spit out that gum. I don't get a break. I don't get a fresh start with a new stick. The cycle repeats with symptoms, treatments, and side effects.


I'm still alive. I'm still the same person. But life with MG has been a long and tough road. My life now in no way resembles what it did even eight years ago.


The best resolution would be to spit out this old and icky gum. It would be amazing to get a burst of fresh mint with a brand-new start.


I'm so very grateful for the research and new treatments that have come about since my diagnosis. I'm excited that raising awareness is getting MG on the radar of more people. I'm holding out hope that someone will develop something to help us get to the point of remission and if aiming for the stars, a cure!!


I’m sharing this month in honor of those gone too soon from myasthenia gravis and for those who continue to fight to live with it.

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