How to Battle Chronic Illness With Humor

An excerpt from Karen Duffy's Backbone: Living with Chronic Pain Without Turning into One.

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In almost all of my friendships, I'm the more outgoing of the pair. The exception was Amy. She was from Indiana, and when she arrived in New York, this fresh-faced, corn-fed fashion plate made an impression. Amy was brilliant and bold. She wrote about fashion and culture. We were the same age, yet Amy was more mature, sophisticated, and cosmopolitan. On assignment in Paris she adopted a miniature pinscher she christened Cliché, the name Dorothy Parker—the patron saint of aspiring female writers in New York—gave to her little dog. Compared with Amy, I felt like I just fell off the back of the turnip truck. My family has been rooted in New York City for generations, but she seemed . . . New Yorkier. Some people are just born New York, regardless of the geography of their birth. Amy was born New York.

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We met through mutual friends and immediately hit it off. When you join an online dating service, you're matched with a potential partner because you both like the same things. I was drawn to Amy because we both disliked the same things. She hated whining, sentimentality, hypocrisy, the inability to take a joke, and above all dishonorable behavior. I found in her a kindred spirit. We bonded early through a shared grudge against a fashion editor who'd done each of us a bad turn. I got mad. Amy got that woman's job. She was one of the youngest editors ever hired at the New York Times. I always thought of myself as bold, but Amy was bolder.

We also shared bad luck in the health department. Amy and I were struck in the same year with acute illnesses: I had a neurological condition, later identified as sarcoidosis, and Amy was diagnosed with breast cancer. Our hospitals were across the street from each other on the Upper East Side, Amy at Memorial Sloan Kettering and me at New York Hospital/ Cornell Medical Center. We would crank-call each other's rooms and play tricks on our medical teams, such as wearing fake mustaches and false beards during the morning rounds to get a rise out of the interns. We bought remote control fart machines and hid them in each other's rooms to mess with doctors and visitors.

Like good journalists, Amy and I made it our mission to investigate our new surroundings. We'd heard there were secret underground tunnels that heads of state and other dignitaries used to travel between the two hospitals, so we started a competition to see who'd be first to successfully bribe an orderly to wheel her to the VIP catacombs. And we pestered the staff for information about the famous socialite Sunny Von Bulow. She'd been in a persistent vegetative state for decades, and Amy was convinced she could track Sunny down in the warren of high-end suites.

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When we got out of the hospital we lived our lives, managing our illnesses, our careers, and our love lives. We both saw the same psychiatrist, who specialized in treating women with serious medical issues. Amy and I both met great guys around this time, and despite the $300-per-hour disapproval of the psychiatrist, we both got married.

Our husbands became friendly, so Amy and her husband came to visit us at our farm in Connecticut. After her health scare, she decided to fulfill her dream of owning a country house too, because why wait? Amy and her husband bought the lake house I had found for them in the next town over, and our friendship grew.

Unfortunately, friendship wasn't the only thing growing. I discovered that I had a blue-ribbon bunch of tumors on my uterus right around the time Amy learned that her cancer had spread to her brain. We found ourselves neighbors once more, though not in the bucolic Connecticut countryside. We were back in the Upper East Side medical complex.

Once again we tried to liven up out hospital stays. We ordered dinner from our favorite restaurants and had it delivered to the hospital. Amy had a manicurist come to do pedicures and manicures. We chatted on the phone and shared movies, magazines, and books.

One of the books we shared was Julia Sweeney's God Said Ha!, a touching and hilarious memoir of the time Julia and her brother were both diagnosed with cancer within weeks of each other. Julia had ovarian cancer, and her brother had lymphoma. The Sweeneys teased each other, accusing the sibling of having "Cancer Envy." Julia told him, "You just couldn't stand it, could you . . . me getting all the glory. You couldn't stand it so you got it too, just because you were jealous of the attention." Amy thought I was stealing her thunder by getting another lousy diagnosis the same time she did, for the second time.

We were in our early thirties, and gallows humor helped us through the most frightening procedures. I got a framed portrait of Dr. Kevorkian, aka "Dr. Death," to hang over my bed, and Amy longed for one as well. We'd sneak in liquor and get tipsy, figuring it probably wasn't going to be the booze that killed us. Years later, I saw a contraption called the "Wine Rack," which is a sports bra with a plastic reservoir for smuggling hooch. There's a long tube so you can breast-feed yourself at festivals, concerts, or wherever the mood strikes. Amy would have loved this, and she would have appreciated that it could have saved her thousands of dollars in breast reconstruction.

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Amy was my badass friend, who dealt with illness like a boss. In mirroring her, I gained the toughness I needed to deal with my rapidly compounding health problems.

Amy and I cultivated friendship along with tumors and lesions. We each had surgeries and chemotherapy and psychotherapy. We both kept writing, and we pushed each other to suck it up and not be a pussy about our illnesses. Amy really had no time for pussies. She edited the style section for our nation's paper of record from a hospital bed. She had a caustic edge as a friend, but she was also the most generous and inspiring editor I ever worked for. When People magazine voted me onto the worst-dressed list, Amy helped me get the last laugh: she had me write a piece for the Times Sunday magazine about how it feels to be categorized as a head-to-toe horror on the worst-dressed list. She knew how to have fun.

Close friends do what's called "mirroring" — they copy each other's behavior. Sometimes this is bad, like when you take up smoking or drink too much because your friends do. And sometimes it's positive. Amy was my badass friend, who dealt with illness like a boss. In mirroring her, I gained the toughness I needed to deal with my rapidly compounding health problems. I like to think Amy mirrored me too, that part of me that that seizes opportunities and flies when the window is open. Maybe I helped Amy decide to go ahead and buy the country house she loved so much.

Amy was one of the wittiest wiseasses I ever met. She was bold and hilarious and cutting. Illness only seemed to egg her on to new heights. We were together at a swanky fundraising dinner for a breast cancer research organization, both of us wearing wigs and scarves to cover up our varying stages of baldness and steroidal puffiness. A model neither of one of us knew very well burst into tears when she saw us. We thought we looked pretty good, considering. This stranger then went in to double-hug us, two people who recoiled from sympathy hugs. After extracting ourselves from her sobbing bosom, I grumbled something under my breath. Amy said in a perfectly normal voice, loud enough for this woman to hear, "Why don't the people who deserve tit cancer get tit cancer, because after that performance, she deserves it!"

Together, Amy and I endured the acute phase of illness. We had the best medical care possible, and it enabled me to transition to the chronic phase. Over a decade later, my chronic phase is ongoing. Amy's is not. She died of metastasizing brain cancer four years after her first diagnosis.

In honor of Amy, I won't be a pussy about it. I'll give you the facts about what happened. It was unbearably sad. Her death really sucked. She died in increments, lost pieces of herself, bit by agonizing bit. First she couldn't hold a pen to edit or write or even scrawl a few words. Her vision went, and she could no longer see the beautiful clothes on which she'd spent her professional life as a groundbreaking fashion critic. Then she lost the ability to speak, to deliver the caustic bon mots that had always delighted me.

Then she lost consciousness, and then one day she was dead. I think of her all the time and I really miss her. Cliché the dog died right after Amy; she'd lost too much too.

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My story is different. I got sick and stayed sick. I went through the acute phase — the lights flashing, emergency, what-the-hell-happened-to-me stage — and matriculated to the chronic phase. This is where I've been for fifteen years. This is the second phase, where you get accustomed to a whole new life of coexistence with your illness.

But there's more to illness than just a stretch between acute sickness and a dirt nap. Millions of us, people with cancer, lupus, MS, Parkinson's, sarcoidosis, fibromyalgia, Crohn's, cystic fibrosis, and many other diseases will live for years with invisible but persistent illness. Whether it's the miracle of modern medicine or the luck of the draw, we are fated to have to find a way to live for decades with an incurable condition. How about a new name for this stage of life? We've gone beyond chronic into something else. I don't want to make this sound too rosy, because this stage of illness isn't really what you'd call thriving. But it's more than just treading water. I'm not healthy and I never will be, but I'm not hanging by the skin of my teeth either. (What the hell does that even mean, anyway? It's a Bible quote, and unfortunately the author didn't provide a footnote.*)

I read an interview with the former Guns n' Roses bass player Duff McKagan, in which he said that life after getting sober was like "extra innings" — he'd abused his body so much with drugs and drinking that he "shouldn't be here." And it struck me that that's where I am now, even though I never went wild like my namesake did. I could have croaked, but here I am, playing in extra innings. In extra innings, the game could end suddenly, but you're still getting free baseball.

In the extra innings phase, you can learn from your life and live with vigor and generosity and gratitude. There is a belief that when you lose one sense, the other senses make up for it and become sharper, as in the old wives' tale that a blind person can hear a pin drop across the room.

Maybe in extra innings we discover new skills, such as patience and resilience, even as we accept that what we lost won't come back. I've lost my senses of touch and smell and partially my vision, but perhaps my heightened senses of humor and compassion will make up for it? My body is sick, but my spirit is thriving. Maybe in these extra innings we'll call it even?

Extra innings are a bonus. It's a challenge to accept that no matter how well I manage my illness, the symptoms and chronic pain will always be a part of my life. I may mourn for my old life, but now it's up to me to figure out what life I want to lead in extra innings.

When you play sandlot baseball, you flip a coin to see who gets that last time at bat. Flipping a coin goes back to ancient Rome. The head on the coin was the emperor, who was also a living god. If you got the head, god was with you. I won my coin flip. Amy didn't. She was thrown some curve balls, but she gave 110 percent to the very last inning. She was an all-star.

This chapter would have completely struck out with Amy, because another thing she couldn't stand were sports metaphors. I miss her still.

Copyright © 2017 by Karen Duffy

All rights reserved. No part of this book may be reproduced in any manner without the express written consent of the publisher, except in the case of brief excerpts in critical reviews or articles. All inquiries should be addressed to Arcade Publishing, 307 West 36th Street, 11th Floor, New York, NY 10018.

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