Immediately upon being diagnosed with ALS, I heard from doctors, support groups, books, and websites that this disease will steal my dignity. I wanted to be on guard against this, but there was a problem: I didn’t have a clear understanding of what dignity means. It was always just a collage of images: Dame Judi Dench’s face, a smattering of red shame, and a slug trail across the canvas indicating where self-respect left the building. Only when I was in danger of losing my dignity did I feel it running through me.
The night I learned about dignity started with horrible muscle spasms in my limbs. Fresh out of medical marijuana, I had to fall back on Vicodin, which is less effective and leaves me unable to move because my balance suffers so greatly. I was only a few hours into my deep narcotic sleep when I woke up with a serious problem: a painfully full bladder.
“Evan,” I whimpered to my sleeping husband. “I have to pee really bad!”
“I’ll get the walker,” he mumbled, easing out of bed.
“I can’t stand up for the transfer to the commode. The Vicodin gave me noodle legs.” I tried to keep my voice steady, but I was afraid that if I didn’t get to the commode fast enough, I would have an accident. It had happened a few times at the beginning of ALS. This was before I started a medicine that silenced the fried nerves tricking my poor bladder into letting go.
Evan paused, considering. “We have to use the Hoyer lift,” he concluded. “It’s our only option.”
I wiggled to help Evan put the Hoyer lift sling underneath me. Normally, it would wrap around my legs as well and hold me in the fetal position while Evan used the lift to raise me off the bed and put me in the wheelchair. However, now that I needed to land on the commode, my pants had to come off.
For the record, hanging pantsless in mid-air in one’s bedroom is not nearly as fun as it sounds, especially when abrasive canvas ropes curl a person so her legs are smashing a full bladder.
“Hurry,” I squeaked from inside the sling.
“I’m lowering you over the commode now.”
Except when I landed on the commode, I was on my back. The commode is narrow and shallow. It does not tilt like my wheelchair to catch me as I descend. Evan immediately raised me up, promising, “I’ll try again. We’ll figure it out.”
At this point, the Vicodin had me thinking I was becoming a chimpanzee baby in a swinging leaf-cradle. I was not really in a place to strategize, and I silently thanked god for Evan.
However, one more try, and it was clear I would not be landing on the commode. I started crying. Between the way the sling irritated my bare legs and my burgeoning belief that I would never be able to pee again (courtesy of the Vicodin), I was losing it.
“I think,” Evan began, then paused just long enough that I knew I wouldn’t like what he said next. He started again: “I’m going to hold the bucket from the commode under you; you’ll have to pee like that.”
By then, I was sobbing. “I can’t,” I cried. “It’s too humiliating.”
“It’ll be fine,” he soothed. “I swear this will work out just fine.”
As he said these last words, I felt the bucket press against the back of my thighs. I cried harder, the pain in my bladder sharpening.
“You can do this,” Evan encouraged me gently. “I’m right here.”
Choking on the mucus and tears of my embarrassment, I finally let my bladder go, mostly because I could not control it anymore. My hair clung to my sticky face, tangling in my lashes. I looked for patterns in the textured ceiling to get my mind away from this horror. I couldn’t escape my feelings, though. Something vital around my heart fractured.
“That’s my dignity,” I thought, imagining I could see it floating away in fragments.
“You’re doing so well, honey,” Evan said, full of warmth and pride, all because I was peeing into the bucket he held.
The sound of his voice arrested the pieces in their ascent.
“Everything’s going well. There are no spills. I’m so proud of you.”
The pieces hovered and, in the unhurried way of feathers, drifted back down to me. My dignity had been salvaged.
Then it was over. Evan removed the bucket and put it back in the commode. He put his face by mine, his hands brushing my hair and tears from my cheek, then kissed my forehead and said, “It’s all over, and you did so well. Do you feel better?”
“Yeah,” I replied softly, my breathing evening out.
Evan used the lift to settle me back in bed. He pulled up my pants and tucked me in. After the rough sling, my sheets felt luxurious. As I fell asleep, my thoughts returned to dignity, and I finally saw it clearly. Now I know how to use it.
Here’s how to pee from a sling (or do any other wacky thing your heart desires) with dignity :
Know the nature of dignity: Understand that dignity is a fine gold filament threaded through the spine and pulled taut so a person can stand straight.
Surround yourself with people who value your dignity: Your sense of dignity can be delicate. It has to be nurtured.
Have confidence: With the right attitude and a solid friend, you can get away with almost anything. Just hold your head up and think of running water.
To learn more about ALS, view the video below and visit my blog How I Live Now: Life With ALS