Sigh. I've had this disease a long time and am thankful that it is not life-threatening to me right now. But sadly I have had to give up some things.
THINGS I'VE LOST
Writing by hand. I miss journaling in the morning when I first get up, which I told someone once was keeping my own counsel.
And although I could continue to do it on a computer, I know myself. I would go back and edit as I go.
Which would defeat the whole purpose, described in Julia Cameron’s The Artist’s Way:
“When we write by hand, we connect to ourselves. We may get speed and distance when we type, but we get a truer connection--to ourselves and our deepest thoughts-- when we actually put pen to page.”
Wearing regular underwear. I now must wear disposable, extra-absorbent underwear, something that I used to joke about with friends saying I’d have to insist on black ones since I mostly wore black panties.
The whole set up is way more bulky than would’ve been acceptable back when it wasn’t needed. But I am mostly sitting in a wheelchair now so you’re not gonna be noticing the lumpiness.
Walking. Traversing a sandy beach, doing cartwheels, jumping on a trampoline. Roller skating. Trying on clothes in the changing room. Climbing stairs and trees. Standing up to shower.
Driving. When I was leaving work on one of my last days in the office, I was heading for the on-ramp to the freeway home. Suddenly the light changed and the guy in the car in front of me slammed on his brakes. My brain recognized it but the nerve signal couldn’t make it to my foot.
At the last minute I was able to swerve but sideswiped the bumper of the car in front of me anyway. Luckily there were no injuries. We pulled over to exchange details, and after he left I realized I needed to stop driving.
Now I’m dealing not only with the loss of my ability to manage my reflexes, but to even bend my legs at will. My vision is also no longer reliable
Doing some creative things. Sewing something. Tearing pictures out of a magazine to paste together in a collage. Baking. Saying “In a sec” to something and having it only actually be a second.
CHANGING MY ATTITUDE
Then I remember that I don’t have chronic pain. And that I can still dress and toilet myself, swallow food, and talk and breathe on my own. So I make a new list.
THINGS I'M GRATEFUL FOR
Working. Telecommuting from home, and also that I am still able to be in my home. Online bill pay. Grocery delivery.
Incontinence supplies. I think all the time how lucky I am in all the unluckiness of this that I have disposables. And black adult diaper covers. :)
Participating. Elevators. Cut-outs in curbs and other ADA stuff. Wheelchair service at airports. The Internet as community.
Doing other creative things. Able to knit. Blogging. Learning new things.
Nothing found here should be considered medical advice. Please consult your doctor before making any changes.