“Don’t focus on what you can’t do, focus on what you can.” I seen this quote credited to Gary E. Stevenson, a member of the Quorum of the Twelve Apostles of The Church of Latter Day Saints. I honestly have no idea who this guys is, but the point is, this quote is meant to be inspiring. Obviously, Mr. Stevenson has never had to deal with chronic illness or disability.
Someone reading this is thinking, “But Stephan Hawking”. Hold that thought.
Four years ago you could have found me hanging out in a mosh pit at the Mayhem Festival enjoying the likes of Korn, Trivium, Asking Alexander, and Avenged Sevenfold. (A word of warning, Korn mosh pits are brutal.) A couple weeks ago a friend of mine posted that he was at a Fozzy concert and that is when it hit me. My body will no longer allow me to do the pit thing. There is a pretty good chance that my concert going days are over because the bands that I want to see are perform at standing room only venues.
Not that going to concerts four years ago was easy. It meant covering my hip in Lidoderm pain patches and loading up on pain medications. I would also have to take someone with me and keep them on my right side to prevent having my hip hit. This worked out pretty well, for the most part. It also meant sleeping for three days afterward.
My body has taken a serious decline in four years and it’s been rough coming to terms with it.
A year or so ago I discovered ergo-dynamic crochet hooks and took up crocheting again. I found that it helped with the arthritis stiffness that was forming in my hands. Today I can only crochet 10 to 15 minutes before I have to put whatever I am working on down to let the cramping in my hands subside.
My fine motor skills have pretty much gone down the toilet. Manipulating pins to sew, let alone threading the sewing machine, is almost more trouble than it’s worth. I can barely hold a pen. Typing is sometimes difficult. I have to have help making my bed because wrestling with fitted sheets cause me pain. I can’t lift anything over, say 10 lbs, because I risk doing more damage to my shoulder. That means I really shouldn’t pick up my cat. The list of every day things that I can’t do, or find difficult, grows every day.
It’s very hard to get used to. I am pretty sure that Stephan Hawking went through the same thing as his body was starting to fail him. ALS is a progressive disease, he wasn’t born in a wheelchair. It’s frustrating not being able to do simple things for yourself like tie your shoes or put on socks. It’s also heartbreaking when you realize that you can no longer do things that you once could. It’s even worse when it’s a hobby because you have to find a new way to amuse yourself that isn’t Netflix. I’m told that being a couch potato isn’t a real hobby. It’s hard to focus on what you can do because that list of things keeps getting smaller and smaller. It’s hard not to become depressed and mad and frustrated. You find new ways to do things, ask for help, or you don’t do them.
I am allowed to take time to focus on what I can’t do and come to grips with growing limitations. I am allowed to mourn the loss of body that used to be healthy and being able to do things that everyone else can do, things that I used to take for granted. This has nothing to do with being negative, no matter what rest of the world thinks. This has to do with adaptation and grief. Loosing the ability to walk unaided is just as devastating – albeit in a different way – as loosing a pet or family member. Yet we are told we are being silly about not being able to walk unaided because we have cars and motorized scooters and other ways to get around. It’s not the same.
The worst part is when someone asks you why you didn’t do a thing and you tell them “Because I can’t” and they don’t believe you. You get told you are being lazy, you aren’t trying hard enough, that you just don’t want to so you didn’t, and a world of other belittling things. Obviously you don’t look disabled so you have no excuse.
On top of the pain from arthritis, bursitis, scoliosis, and fibro, the fibro sucks away any energy that I have adding another obstacle to doing things. I often forget how much energy pain takes out of the body until I have slept for 14 hours. Maybe I should just refocus on sleeping…