Myasthenia Gravis Has Given Me Hard Lessons and Great Gifts

Returning to a Midwest winter evokes memories of struggles and rewards

Shawna Barnes avatar

by Shawna Barnes |

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There’s snow on the ground and a nip in the air. The smell of burning wood fills the air, with smoke dancing from the chimneys. Winter has arrived in northern Wisconsin. It’s different from the winters I’d grown accustomed to in Maine; it’s like the winters of my childhood.

Growing up a farm girl

I was born in Iowa, and despite a couple of years when we lived in Germany, I spent much of my childhood in the Midwest. Ohio, Minnesota, and Wisconsin were all places I called home from the time I entered kindergarten through the end of my middle school years. These were the years when my biggest worries were helping my parents take care of the critters on the farm, keeping my younger siblings (all five of them) from killing one another, and making it to swim practice on time.

I used to be a rather active kiddo. Farm chores have a way of keeping one in shape, what with mucking hog stalls, throwing bales of hay, and helping birth piglets. These activities helped keep me in pretty good shape and prepared me for the rigors of swim practice. Swimming was once my escape, especially distance; how I loved to just get in the pool and swim for literal miles. My best event was the 1,650-yard race.

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East Coast vs. Midwest

We moved to the East Coast my freshman year of high school. I still found a way to keep swimming in my life as a lifeguard and swim instructor, but it was different. No more swim team. The weather was different, too, especially the winters.

When people explain a humid heat vs. a dry heat, most understand the difference, or at least they don’t look at you sideways. If you try to explain the difference between a dry cold (the Midwest) and a humid cold (in Maine), you get a side glance that more or less lets you know they think you’re nuts.

Why the trip down memory lane?

Because as winter claims its grasp on the Midwest, I’m mildly surprised by how well I’m feeling. This could be for a variety of reasons, one of which could be the medication adjustments my care team has made to stabilize my myasthenia gravis (MG). However, I don’t believe that’s the only reason.

My chronic pain levels, which always increase when the cold sets in, are diminished in comparison to what they were the last 10 years I lived in Maine. Normally by this time of year, I’d be sleeping in front of the wood stove (because for me, wood heat just seeps into the joints better than anything I know) to help ease some of those aches and pains. I’ve had neither the desire nor the need to do that so far this year.

The change in my health has me hopeful that I can swim once again. Swimming has always brought me great joy, comfort, and peace. In the water, nothing else matters. And then there are the health benefits of moving with less effort and less impact on the joints.

The greatest gift is the one we give ourselves

This holiday season, I hope that you take the time to find what truly matters to you and makes you feel your best. This little trip down memory lane has me thankful for my move halfway across the country, which has led to me establishing a caring and responsive care team. The location also seems to be improving my overall health, as I just feel better here.

It’s important that we be kind to ourselves and give ourselves the gift of grace, peace, and acceptance. Having MG sure isn’t easy. It’s trying, frustrating, discouraging, isolating, and depressing, but it can also be the greatest teacher. It has taught me to accept myself where I’m at now, to engage in self-care rather than just talk about it, to practice open communication about what I need from those around me, to advocate for myself for proper treatment, to be vulnerable with someone other than my husband, and to ask for help.

Having MG has provided some of the hardest lessons in my almost 39 years of life, but it’s also given me the greatest gifts. It just took me a while to see those gifts for what they are. I hope your holidays are filled with warmth, kindness, compassion, and peace this year. Remember, the greatest gift any time of year is the one we give ourselves.

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.


Richard Tracy (as in

Richard Tracy (as in "Dick Tracy")

I enjoy your comments as a fellow MG victim.. I'm 84, a retired journalist (30 years writing and photographing for The Sacramento Bee) who profits from your comments in dealing with our common enemy. Through use of Prednisone and Pyridostigmine I've kept things under control (no more drooling, drooping eyelids, difficulty swallowing, etc.) Recently I've experienced what I thought were "Yuletide Blues" and now see that about 1 of 3 MG sufferers have depression to deal with. That actually made me feel better! And yes, I have episodes of anxiety from time to time as an MG offshoot. Damned annoying, but when I see what others in my age group are dealing with, I breathe a sigh of relief. Anyway, keep up the good fight. Happy holidays! .


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