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

Deaths in our family have led us to weigh just what we might face

Shawna Barnes avatar

by Shawna Barnes |

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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.


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.

Comments

Jen avatar

Jen

I understand where you are at. I am coming to terms with where I am and what MG can do. Thank you for sharing:)

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Andres de Toro avatar

Andres de Toro

Hi Shawna,

Many thanks for sharing with us your thoughts and feelings about MG. I´m writing this from Madrid (Spain) and your words moved me to write here for you and for others. My daughter Carol had a tymoma surgery back in 2020 (at the early stage of COVID-19 pandemia) when she was close to her 30th birthdate and thanks God, everything was right and she´s now living her professional and personal lives with enthusiasm and happiness, despite the small remains of her MG. I can assure you that yes, there is life and happiness after MG diagnosis, and the best thing is to notice that people around us feel capable to provide help and love with their very best. Many thanks to tell us your experience and please keep up delivering hope and goodness to make this world better. All the best!

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Marie Bender avatar

Marie Bender

Shawna - thanx ever so much for sharing. Only received my MG diagnosis 'lil over year ago & have not found drug or infusion yet that relieve my awful symptoms - they all make things even worse so far. Am now waiting for approval for Retuxamab infusion which doc says has better possibilities. Sure hope so - some days, I am almost nonfunctional. Your story gives me hope for my future as I live alone Thanx again.

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