I’m living with MG, and my best life, where everybody knows my name

I live in a little community in northwestern Wisconsin that boasts fewer than 1,000 year-round residents. This fluctuates greatly during the winter and summer tourist seasons. I had concerns about living in such a rural area when my husband and I decided to move from Maine in 2022.

I was concerned about whether we would find adequate medical care for my myasthenia gravis and other health issues, if we would be welcomed by our new community, and if my husband would truly love the Midwest like I do. My concerns were ill-founded and I’m thankful beyond measure.

Settling in my new community

I was pleasantly surprised at how quickly I was able to establish my care team in Wisconsin. I’ve written several columns about getting a care team established and how amazing my care has been since we’ve arrived. My primary physician is 22 minutes away. An outpatient clinic that has some specialists is just over an hour away. If I need to see my neurologist or other high-level specialists, I have to travel 3.5 hours.

A benefit of the COVID-19 pandemic is that many of my specialists are agreeable to telehealth check-in appointments. This means I only travel the longer distance once or twice a year.

I didn’t have this level or quality of care when my care team was more concentrated in a single location. I will take the quality of care I have now over what I had then any day of the week. My husband and I have turned the travel to appointments into quality us time.

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Wanting a place where everyone knows your name or where an entire community springs into action when one of their own needs help, we have landed in the holy grail of communities.

Sometimes this type of close-knit community gets a bad rap because everyone does know your name, and thus knows your business. Having a community that knows my business, especially as it relates to my health struggles, has proven to be a saving grace.

My mother-in-law passed away unexpectedly the first week of January. With no thought about how I was going to do the things my husband normally takes care of as my caregiver, I did my best to get him back to Maine as quickly as possible. I told my best friend what was going on and she told me not to worry about anything, that she and her husband “had my back.”

And they have. Our main source of heat in the winter is a wood boiler that is situated across the driveway and takes logs that are far too heavy for me. Between three different families, the wood boiler was kept running so I never had to worry about staying warm, despite the Arctic temperatures gripping the Midwest.

I’ve had to accept being more vulnerable than normal while my husband was away. I’ve had some other health issues not related to my disease crop up that have made normal, everyday tasks difficult. It’s not safe for me to cook when I’m alone due to hand weakness and loss of feeling in my fingers. I had resigned myself to eating sandwiches and SpaghettiOs with a pop-top that could be warmed in the microwave.

But I was blown away by the kindness and generosity of the folks who call this place home after I accepted their condolences and was open about how I was doing and where my struggles were.

My driveway was plowed when we had snow. Offers for exercising the dogs poured in. And I had people checking on me daily, not just to send condolences, but to see how I was doing and if there was anything I needed. Offers to drive me to my IVIG infusion were bountiful. The SpaghettiOs are still in the cupboard. Prepared meals were delivered the two weeks my hubby was away.

Rural living has its drawbacks, for sure — like a 3.5-hour-one-way trip to my specialists. But when you live in an area where everyone knows your name and pulls together in times of need, those drawbacks don’t seem like much. This little unincorporated village of fewer than 1,000 people is where I call home, and where I will always call home.

A funny thing happens when you feel the support of a community like this — you get to live your best life possible.

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.