I laugh when people say they have trouble getting out of bed in the morning. Try having to do what I call “FSHD yoga” to get up. It involves swinging the legs over the side, leaning on your left elbow, using your right hand to grab a handle attached to the side of the bed, and pulling yourself up to a seated position. Then the hard part. With your left hand on your knee, push yourself up to your feet. But because you’re unable to straighten up at the waist, you arduously turn your body towards the bed, reach for the top of the mattress with your right hand for support and quickly take your left hand off your knee and onto the bed, all while trying not to lose your balance and fall. Then, while leaning on the bed, shift your weight to your left arm and push yourself up to a standing position.
You don’t want to do this while you’re tired. That’s why I would make sure I was awake for about twenty minutes before I would attempt it.
After years of this, I finally have graduated to transferring to and from my wheelchair instead. Then I use the elevating feature of the wheelchair to raise me up and I am able to stand.
There’s a book by Admiral William H. McRaven about making your bed. It’s about accomplishing something before starting your day. But for me, getting up is an accomplishment.
Why does it have to be so hard, you may ask. Good question. Because I’ve been stubborn. That’s the light-hearted answer. The real answer is much more introspective. It’s because every time I use something intended to make my life easier, it feels like a defeat.
Comparison is the thief of joy
I’m constantly comparing myself to what I used to be, what I used to be able to do. Living with a progressive disease means constantly adjusting to what you no longer can accomplish. Simple things that make you feel inferior to your former self.
You’re thinking “If I stop straining my muscles to do this or that, my condition will worsen.” That it’s somehow your fault that you can’t fight off this enemy.
There’s this great scene in Good Will Hunting when Robin Williams is telling Matt Damon, “It’s not your fault” over and over until Matt Damon truly believes it. To embrace help, is to embrace the idea that it’s not your fault.
Chasing miracle cures plays into this as well. Maybe someone improved their condition by traveling to the rainforest and living on a berry that’s only found in that region, “but big pharma doesn’t want you to know”. You can’t feel guilty for not trying this, or bringing your child to do this. It’s not practical and would cause so many other unintended consequences to your life. If you can try a diet or supplements and it improves your overall health, by all means do that. But science will bring a treatment to the masses if we continue to fund research.
Do everything within reason. Never give up.
It means find a way to do things better, easier. To embrace the change and keep finding a way to move on, despite these perceived “defeats”.
As Frank Turner sings in the song “Demons‘, “You won’t get everything you wanted, but you will never be defeated.”
