Hard truths about my MG are pointing us to consider the future

The past 12 months have been eye-opening for me, bringing opportunities to accept hard truths about my mortality and independence while living with myasthenia gravis (MG).

Both of my husband’s parents passed away in the span of just 18 months: his father on Halloween in 2022 and his mother in January of this year. Watching him deal with end-of-life and estate issues has led us to plan for when we’ll face that time. We’re looking at certain concerns to make sure our son never has to worry about them like Justin, my husband, has had to do.

We’re preparing to travel to Maine at the end of July for my mother-in-law’s celebration of life ceremony and a family reunion. It’s bringing up all sorts of emotions for both of us. I’m recalling the inadequacies I experienced when, a year and a half ago, I traveled solo to meet my mom in Denver. I know that I’ll have Justin with me this time around, but I’m feeling a certain trepidation.

And then there’s the addition of Jane, my home health aide. She’s been an absolute gem and a blessing to our family. But with her help has come an acceptance that my health is poor enough to qualify for it. I’m a huge advocate for using all the tools and resources available to live my best life, but using those resources doesn’t mean that the sting of my MG reality is lessened.

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It still sucks to know that, at 40 years young, this is where my life is. I’m not able to cut or prepare a majority of my own food. I can’t eat certain foods because I choke on them. I need help with bathing and personal hygiene. My step count is now 2,000 a day, but that can fluctuate and require me to use a walking cane, forearm crutches, or walker. I still use my wheelchair for days when I know I’ll be doing a lot of traveling, walking, or standing.

I’ve written before about being more than the things I cannot do. But again, just because I know I’m more than the concerns above, it doesn’t prevent the realization of them from taking my breath away some days, like a gut punch. And it hurts.

With all of these concerns swimming in my head, a not-so-happy thought started percolating: “What’s to come if something happens to Justin?” That led me to look into local veterans homes and assisted living facilities. I began wondering if my son, Caden, would move back home to take care of his mama or if I’d have to move in with him and his future family.

Maybe Home Instead, which helps supply my aide, and Veterans Affairs will increase the number of hours I’m approved for home assistance in the event Justin weren’t around anymore and I wanted to stay home. If that happens, though, what kind of help would I need to replace what he does for me, and is it reasonable to ask an aide to do it?

Morbid thoughts? Oh, definitely. But they’re thoughts that I can’t seem to shake. And the hard truth is that they’re thoughts that I should be thinking about more, as well as plans and possible solutions. But I think that can wait until we come back from Maine and my hubby is ready to tackle our own mortality.

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