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What Chronic Illness Taught Me About the Quality of Life

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At 22 years old, I was a recent college graduate with a business degree, living in Seattle and launching what I hoped would be a successful public relations career. Suddenly, an autoimmune kidney disease diagnosis paired with the words “progressive” and “incurable,” and doctors began to discuss my “quality of life.” I’d never considered that phrase because “quality of life” isn’t typically a topic of discussion at 22.

I learned an abrupt lesson — life has a fist.

I returned to my family’s home in Minneapolis — ripped from independence, robbed of promise. Doctors gathered, diagnosed me, and pondered my future. We hoped and prayed that my kidneys wouldn’t fail. If they did, how would I have a meaningful life?

Aggressive treatments began, powerful medications flooded my system, and I lost my hair. A wig was in order — so my mom consulted her friend, Carol, who had experience with such matters. Browsing through the catalog from Carol’s favorite wig shop in New York, I selected a sassy medium-length brunette hairdo. When it came in the mail, I put it on, pulled it back, and topped it with a scarf. The only visible “hair” under the scarf was bangs and a ponytail. The less “wiggy,” I figured, the better.

Carol, who was one of my mom’s best friends since high school, lived with recurrent breast cancer after a double mastectomy. Unlike most, I could easily talk to Carol about my illness.

And talk we did — about everything, including hair loss and carrying on. When she asked me if I was scared, I told her I was terrified. As we looked at each other, she didn’t need to say a word. I knew she understood me.

Meanwhile, we prayed on overdrive that Carol’s cancer and my kidneys would both respond to treatment. It didn’t look good for either of us, but Carol seemed at peace with her situation. I wasn’t at peace, though. “I’m just not sure when I should give up on the idea of getting better,” I said.

Locking my eyes, Carol responded, “You never give up on the idea of getting better, Jennifer. Never.”

A runaway tear slid down my cheek.

“Promise me,” she said.

I promised.

My kidneys failed. Dialysis began. Three times a week, I sat in a faux-leather vinyl reclining chair while my blood traveled through plastic lines to my artificial kidney. Over three hours, the machine filtered toxins and fluid from my body.

Although I did not want to be in that chair, I found unexpected camaraderie with the technicians and other patients. I even attempted humor when the technicians distinguished between the chronic and acute patients. I feigned offense at my status with a “Don’t you think I am a ‘cute?’” It was not a knee slapper, but I tried to lighten the load any way I could. Humor always helps me.

Carol knew all about humor. She lit up a room with her quick wit — and wherever she went, laughter followed. Sadly, though, we lost her. Carol died at 50 years old — a lovely life cut short. I’ll never forget her funeral. The weight of sadness thickened the air, but the spirit of celebration cut right through. After the service, people shared stories and memories — and to match Carol’s essence, many of their reminiscences provoked laughter. Story after story, memory after memory, that room brightened from the joyful impact Carol had infused into so many lives.

That laughter was a fitting tribute — just how Carol would have wanted it. We were the varied threads that had woven into her life’s tapestry — her people holding a microphone to give voice to her bright light. Maybe that’s what makes life meaningful after all — the close relationships with the people who love you, who stand up at the end and share how they braided into your days.

Three decades after Carol’s death, my stubborn illness remains my constant companion. But with equally stubborn optimism, I never give up on getting better. After all, a promise is a promise. I just redefined the parameters of “better.” I thought “better” equaled keeping my kidneys. Now “better” equals acceptance for the things I cannot change and savoring life while I’m here with my family and friends.

Now in my mid-50s, I’m older now than Carol was when she died, and I’ve learned a lot. The 22-year-old me believed that among my peers, I faced adversity alone, but time taught me that no one escapes adversity. We’re all plowing forward together into uncharted territory.

Carol exemplified the saying “The years in your life do not matter; it is the life in your years.” She helped me understand the essentials of that elusive measure — “quality of life.” When she was here, she lived with an illness, with humor, and with friends and family who loved her.

She lived fully. I’ll set out to do the same.

Image by Belu Photography

Originally published: December 7, 2022
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