When I stumble, my husband is there to catch me

A spouse's view of what an MG caregiver sees behind the curtain

Shawna Barnes avatar

by Shawna Barnes |

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It was 11:50 p.m. Wednesday night, and I was just getting ready to head up to bed after a long, frustrating day at the office. Meetings that ran late and frustrating tech issues were among the woes that led me to this point.

Yet as I was unplugging for the night, I remembered I still had a column to write before 8 a.m. the next morning. I was near tears because I take this column seriously and didn’t want to let down the folks at Myasthenia Gravis News, nor the readers who look here for support.

In swoops my husband with a guest perspective!

What follows is his view on being a caregiver. If you read the interview I did with him last year, you may notice some things have changed. For instance, both of us are now business owners.

Without further adieu, I give you the perspective of my partner in crime, Justin, as my caregiver.

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A caregiver’s life: Justin’s view

As caregivers for spouses with myasthenia gravis (MG), we can be asked to do a lot. Helping with bathing. Running errands. Assisting with cooking, including cutting up food to avoid choking hazards. And taking care of other physical tasks that would otherwise impact our loved ones’ ability to maintain the energy needed to live full lives.

But there’s one thing we can’t help with, and it’s the hardest aspect for us to witness: their inability to live their lives on their preferred terms.

Everyone sees the things that Shawna does, from helping in the community to running not one, but three — yes, three — businesses, including what she does for the back end of my gym, my new business venture. They’re all inspiring. She never seems to stop.

Or so it seems to the outside world.

But as a spouse and caregiver, I see behind the curtain.

I see the frustration with limitations. I see the hurt when she wants to help with something but is either unable to do it or has to weigh the cost-benefit of the physical exertion required.

I see the things she does and doesn’t do to live the life that everyone sees. The truth is that she and other chronic illness warriors live the type of social media existence that’s so prevalent today and has been for a long time. They’re professionals at presenting a public side that masks the reality of their existence, in which they navigate bodies that often behave like overtired toddlers being told no in the toy aisle the week before Christmas.

They smile through pain. They walk and move when their bodies are screaming to lie down and rest. They say yes when they should say no. And they push until they have nothing left to give … and then they push a little more.

I can’t speak to the number of days she’s come home absolutely trashed (not from intoxication; she doesn’t imbibe because of her meds and her body’s reaction to alcohol) and then expressed guilt that she can’t help with things in the home because she’s used up everything she had.

Or the number of 12-to-14-hour sleep cycles she’s completed after pushing herself to the absolute limit, a limit that breeds its own frustration because she’s aware that without the illness, she’d be able to do more.

As a caregiver, I can handle the chores, the appointments, the day-to-day tasks that come with loving someone with an illness. But outside of doing chest percussion when severe illness settles into her lungs, there’s nothing I loathe more than seeing her get emotional over her inability to live the life she desires because of something so far beyond her control.

Chronic illness takes.

It can take health.

It can take dreams.

It can take relationships and dignity.

But one thing it can’t take is my wife’s spirit. I believe that’s what the world sees the most, even more than what she does.

As caregivers, we get asked to do a lot so that those in our charge can live their best lives possible. It’s a small price to pay to witness what we do from behind the curtain.

A final word from Shawna

Anybody else wiping away tears from those onion-cutting ninjas? (Sniff, sniff.)

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.


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