How grief is helping me measure my progress with myasthenia gravis

I cried. All day.

Usually, no matter the level of sadness or grief, I can shut off my emotions because it’s necessary. Crying is one of the triggers that exacerbates my myasthenia gravis (MG) symptoms. I get droopy eyes and have trouble breathing, and weak bulbar muscles steal my ability to swallow and keep food and liquid from going down the wrong pipe.

I cried all day because the world lost one of the most amazing people I know. Knew. She had a way of helping you see yourself in a positive light, no matter the situation or your customary self-talk. She encouraged you to do your best, and could tell what your best really meant.

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Grieving who I used to be because of myasthenia gravis

She’s the reason I taught art classes at the Travis Mills Foundation, a nonprofit that supports veterans. It was during the summer months of teaching those classes that I learned how to navigate the heat with MG.

She’s the reason I felt strong enough to continue self-advocating for a diagnosis, even when I was at my wits’ end. She would always remind me that I deserved better.

She is one of the reasons I sit here every week to write this column. She always encouraged me to share my story and passion for helping others, to turn my struggles into a road map to guide others on their own journey.

She is the reason I continue to chase my dreams, disabilities be damned.

She was Kelly.

Kelly and her son passed away last week from rare complications during the birthing process. I am so thankful to have had this amazing soul in my life since 2017. And even in her passing, she’s still teaching me things.

The loss of my friend opens the floodgates

When my great-grandma passed away, I was unable to allow myself to grieve because crying exacerbated my MG symptoms. Whenever I started to cry, my throat tightened, I had trouble swallowing, and if I tried to take a drink, I would choke on the liquid. It wasn’t long after Grandma Goldie’s passing that my care team tweaked my treatment plan.

Last May, my doctors modified my plan again to include biweekly intravenous immunoglobulin infusions. This has led to the greatest improvement I’ve experienced with MG. I was able to walk farther and needed my cane less and less. But I didn’t realize how much the infusions were helping me until last week.

I cried all day after hearing about the loss of my friend. As much as I tried, I couldn’t stop the tears. At one point, my husband refilled my coffee cup and kissed my forehead, and I realized I had been crying for two hours. Yet I wasn’t short of breath, I wasn’t droopy, and I wasn’t choking on my coffee.

Finally, I can grieve.

I have been afraid to cry or feel strong emotions because of how they exacerbated my symptoms. But because Kelly gave me the strength to advocate for myself and establish an amazing care team here in Wisconsin, I finally have a treatment plan that allows me to grieve.

Once I’m ready to move on from mourning the loss of my beautiful friend, maybe I’ll be able to start grieving everything I’ve had to set aside.

It’s funny (though not in a “ha-ha” kind of way) that I’m measuring progress with grief, because it would be Kelly’s way of reminding me that life continues to evolve. Diseases progress, but so do treatments, and the body’s response to both can also change.

I’ve never been happier to be able to cry all day.

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.