How To Save Your Life When Caring For Muscular Dystrophy

It’s Friday afternoon and I’ve been racing around at work all day pecking wildly at my PC to get my stuff done, and just as I was about ready to call it a day and indulge myself to meet some great friends for a drink after work (and not feel guilty about it!), it occurred to me that I’d promised a colleague that I’d read an article that he’d sent me. Damnit!

the simpsons homer simpson doh
Ugh! Just one more thing standing in my way! Source:

The moment I began to read it, though, all of the stress and chaos of my day suddenly didn’t matter… The 7000-word piece was by David Epstein, who talks about his baffling experience after publishing a book about genetics and sports and the impact it’s had on him as a result of other people reading it.

There’s also a two-minute video of a young mother named Jill who suffers from a rare form of muscular dystrophy and another serious genetic mutation that severely affects her body fat, and as a result, her arms and legs are concentration camp thin.

Her musuclar dystrophy and lipodystrophy are startling and soooooo incredibly heart breaking.

The video shows her preparing food in her wheelchair (atta girl!) with her toddler son and her husband. But OMG, when she recalls a time when her baby was taking his first steps and, at the same time, she knew she would be taking her last, that’s what stopped me cold in my tracks. Made me realize once again to be grateful for the body that I have!

But honestly, my heart goes out to Jill’s husband—and all of the other caregivers out there—just as much. Caregiving is something that I know all too well. Only caregivers know the private hell we live in.

Sisters tina fey amen can i get an amen movie
Whether you’re caring for someone with muscular dystrophy or lipodystrophy, or both, you know you have caregivers who understand. Source:

No one knows what it’s like on a Friday afternoon when everyone starts saying, “Have a nice weekend!” what it’s like to go home to a sick spouse, who will never get well and is gradually getting worse, a loved one who needs your help that evening and every other evening…and morning and afternoon…

I’m humbled to be reminded that we’re all struggling one way or the other and this is the life we have.

Right now. In this moment. Happy or sad. Sick or healthy. Grateful or greedy. I’ve decided, though, that I’m still going to go out and meet my friends for an hour and not feel guilty about it. Deep breaths.

parks and recreation amy poehler drinking beer alcohol
Because as caregivers, we’re allowed to have our fun, too! Source:

My love and heart goes out to every caregiver. Please remember that it’s ok to have some fun every now and then.

Have a great weekend! I mean that. Do something for yourself and enjoy!

So what are YOUR plans? I’d like to hear from you! Got any advice for other caregivers?

Alisha Stone

Alisha Stone

Alisha Stone has a BA in psychology and is dedicated to improving the lives of others living with chronic illnesses.

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