Hello and welcome back, or if you are new here welcome! Glad you stopped by! Around here at Humbly Courageous, my hope, as the author of this blog, is that you will get a glimpse into the life of a middle aged woman, a wife and a mother of two, who has lived a lifetime with Muscular Dystrophy. My life experiences from my perspective, and hopefully learn something you didn’t know about disabilities.
One question that I rarely get asked is, what does Muscular Dystrophy feel like to you. I am often asked what’s wrong with your leg, or why do you walk funny, or comments like yeah I broke my leg once, I know how you feel! However, no one really ever asks me what does it feel like. So, I want to share in case you ever wondered, but were afraid to ask. What exactly does progressive muscle weakness feel like to me?
Picture a weighted blanket covering your whole body. or picture attaching weights to your ankles, knees, hips, core, shoulders, arms, wrists and going about your normal daily activities. Getting out of bed, showering, exercise, laundry, cleaning, making meals, going to the store, kids sporting events, helping out where a parent should be helping and all the things in between. Doing it every day all day with all the weights. Never getting to remove them, even for a second, because it’s not an option. There are no breaks, no saying, I don’t want to be disabled today. For me, in the beginning of my life, the blanket wasn’t too heavy. Restrictive definitely, but doable. I walked, I could maneuver stairs very slowly and holding onto a railing, could ride a two wheeled bike like a boss 😎 and generally got around ok. Sure, things required more physical effort than that of a non disabled person, but more of a nuisance than anything. Youth was on my side.
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| Biker gang |
College years and a few years after, the blanket got slightly heavier, and started to feel more all encompassing, but still it was manageable. I worked out, went for walks with my dog, was socially very active, had the energy for it.
After leaving Tennessee to move back to Indiana, I got pregnant and the blanket, the weight, got considerably heavier, like doubled in weight. Still, I kept going. It was now noticeably more difficult. There was a definite shift. Still doing, but I was starting to unravel a bit. A little internal panic started to set in.
My first son was born and again, the blanket got heavier. Way heavier, as in tripled by now. It took a while for my disabled body to bounce back from a c-section. My core stability had been messed with, which wasn’t great for me. Plus, the demands on my body of caring for my precious newborn were totally exhausting. Worth it of course!
Things never went back to the lesser weight of the blanket before. I long for the early days with this disability, when the blanket was lighter. Some days weighing my abilities against the expectations of the world I live in feels suffocating. It feels isolating. I want to scream, cry and be mad. I know that won’t get me anywhere, and it won’t keep the blanket from getting heavier.
It takes humble courage to trudge on when the blanket, the weight, just keeps getting heavier. Today is my 48th birthday, and my oldest son’s last day of high school. I’m incredibly grateful for the time I’ve had on this earth on my own two feet, and that God has blessed me with two beautiful, healthy boys. It is very, very hard physically, every single day. In my opinion, the stem cells help me to carry the heavier blanket for a little longer than I would have been able to. That’s the way I see it.
If you see someone struggling physically and you are able, go out of your way to hold a door, or return their cart for them. Those things REALLY matter. It helps. Every little bit helps. Keep the HOPE, whatever you are facing. If there is anything life teaches us, it’s that we can do hard things. 💚
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