Whenever I smash one of my fingertip ulcers—reaching for a faucet, reaching for the gear shift, reaching for a doorknob, any time I’m rushing and not paying attention—I curse.
And the only curse that works is the f-bomb. It’s short, explosive and foul. It’s the best way I know to discharge my anger and diffuse the intense, sharp pain.
My fingertip bones are severely resorbed, so the tips are jagged. When I hit an overlaying ulcer, it’s a double whammy of banging a deep sore on the outside and stabbing it from the inside. Even with my bandages, which provide a little cushioning, it hurts like hell.
But oh hell doesn’t cut it.
I also curse when my hands won’t do what I want.
A spoon slips through my grasp and hits the floor. F-bomb.
Coins slide out of my palm and scatter. F-bomb.
It takes five tries to pick the coins off the floor. F-bomb.
I can’t grab a knife from the flatware tray and have to pry it out with another utensil. F-bomb.
It takes ten minutes to align the zipper pull and zip up my winter coat. F-bomb.
I have a battle with shrink-wrap and the shrink-wrap wins. F-bomb.
I drop my cell phone getting out of the car and the back falls off into the sewer (yes, this really happened once). F-bomb.
Sometimes, when I’m cooking a big meal for company and getting tired and things start slipping out of my hands—like a potato I’m peeling or an onion I’m slicing—I don’t simply drop the f-bomb, I start throwing utensils into the sink and slamming drawers and yelling about how the counters are too cluttered and there’s no place to put anything. My family knows enough to stay out of the way.
I try my best not to curse when others are around or within earshot. I don’t want the f-bomb to creep into my everyday conversation and contribute to the decline of civil discourse.
But I hate this disease. Even though I’ve been living with scleroderma for three decades, and most of the time I can manage quite well, it really gets to me some days. I hate the way it’s wrecking my body. I hate how it’s robbed me of activities I love. I hate all the bandages, the ulcers and infections. I hate all the trips to various doctors and all the waiting in waiting rooms and all the medications. I hate discovering yet one more bizarre complication, like the fact that the roots of my molars are resorbing or the time the left side of my face went numb and I thought I was having a stroke and had to go to the ER and learned that I had an inflamed trigeminal nerve that the ER doc diagnosed as trigeminal neuralgia, which fortunately turned out not to be the case. It was “just” a rare neurological issue associated with scleroderma.
There’s no polite way to put this: When your body craps out on you, it sucks. And with a disease like this, you’re stuck knowing there’s no cure, for now, probably not in your lifetime, and even if, God-willing, there is a cure, your body’s too damaged for it to make a difference, and your health is only going to get worse.
When my sister and I were kids, our family used to travel by overnight train from New York to Cincinnati to visit my grandparents every December. Inevitably at the big family gatherings, all the adults would start complaining about their latest physical ailments. We’d sit on the side and snicker to each other, “When are they going to start passing around their X-rays?”
Fifty years later, I find myself engaged in those same conversations with my friends all too often. The older we get, the more stuff malfunctions, breaks and hurts. It’s shocking when it starts. We all know that our bodies are going to give out and we’re going to die someday, but we don’t really want to believe it until our mortality slaps us in the face. I’ve just been battling the inevitable much longer than most of my peers.
So I guess I have something of an advantage in the how-to-cope sweepstakes. But that doesn’t help on days when my house keys slip through my fingers and I drop the package I’m carrying as I try to pick them up and have to take off my glove to grasp the keyring but it’s too cold and my fingers go into a Raynaud’s spasm.
Then the only thing that works is dropping the f-bomb.
Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com.