Backbone: Living with Chronic Pain without Turning into One , by Karen Duffy, Arcade Publishing, 2017, 252 pages, $22.99.
As someone who was a teenager in the early 1990s, I remember Karen Duffy as “Duff,” the hip, sassy, funny video jockey (VJ) on MTV. She was beautiful but not “girly,” and I — an awkward adolescent, to say the least — envied her confidence and evident comfort in her own skin. Now, 25 years later, after reading Backbone, her new memoir about living with the chronic pain of sarcoidosis of the central nervous system, I admire the aspects of her that aren’t so visible. She’s a loyal friend, devoted hockey mom — a full-time job in itself — a volunteer for a New York Certified Emergency Response Team, and she gives her time and energy to others who need support. And she does it all while living with unimaginable pain.
Inflammatory lesions called granulomas developed in her brain and spinal column, eventually crushing the nerves in her spinal cord as they grew. Chemotherapy shrank the granulomas, but the permanent nerve damage causes “chronic, unrelenting pain” from her head and neck to her shoulder and collarbone that keeps her in the house on about half of her days. As she writes, “When your condition progresses from acute to chronic and the pain becomes permanent, this is the pain that changes you.” But she hasn’t let the pain alter the person she is or how she chooses to live her life. She does what she can do and doesn’t dwell on what she can’t. Realizing the importance of regular physical activity but unable to perform intense exercise, Duffy took up walking and is a dedicated flaneuse — someone who walks for the pure joy of it, not to get in shape. “I find flaneuring an effective remedy for my chronic pain,” she writes, “and, so far, it has kept the ever-threatening ennui at bay.”
But, as Duffy writes, her goal for Backbone isn’t to “bully you with positivity.” Chronic pain is relentless and draining. She doesn’t dispute that. Yet readers can’t help but feel the positive effects of her upbeat approach to life and her healthy sense of humor, a very useful tool in the battle with chronic pain. And if you need a little more help finding your smile, cut out and wear the “I Got Out of Bed Today Crown” she has helpfully included.
From leisurely walking to reading voraciously to writing actual pen-and-paper letters, Duffy has constructed her own strategy to live with chronic pain. Given that everyone’s pain and experience are different, her plan won’t be a road map for you. But learning how she shaped her own personal approach could help motivate you to develop a personalized strategy to live with chronic pain.
An Introduction to Backbone
I have a chronic illness called sarcoidosis of the central nervous system. It’s a multi-system inflammatory disease of unknown origin. A healthy immune system defends your body from disease; with sarcoidosis, the immune system is what’s causing the problem. My body is making itself sick. Sarcoidosis causes the immune system to create inflammatory lesions called granulomas. I have cultivated a bumper crop of these granulomas in my brain, central nervous system, and lungs. They can attack any organ. Only my teeth and hair are not targets for more lesions.
When I first got sick, I thought the doctors would figure it out and I’d get better and go back to my life the way it was before. It didn’t turn out that way. The disease has irreparably damaged my central nervous system. I never imaged that the pain was going to last this long, that it would be endless, and that I’d have to figure out how to deal with it for the rest of my life.
Over 115 million Americans live with chronic pain. “Chronic” means it lasts anywhere from twelve weeks to life. When one-third of all Americans are dealing with long-term pain, you’d think there would be some kind of massive medical effort to deal with it, like with cancer, smoking, and obesity, but instead, you’ve got this book.
Storytelling is a natural reaction to illness, or so it seems if you look at all the memoirs written by people who got sick. We write to make sense of life, and illness interrupts the story of our lives. The trouble with “sickness books” is they often try too hard to inspire you. Sometimes they can read as more inspirational than believable. A catastrophic illness can’t always be equated to a great spiritual awakening.
This isn’t a misery memoir or a self-help book. But I hope it does help you. I recognize that what works for me isn’t necessarily going to work for you. I won’t bully you with positivity. I give you, the reader, too much credit and respect to boss you around when you’re kind enough to crack open my book.
I wrote a book about getting through the acute stage of my illness, titled Model Patient: My Life as an Incurable Wise-Ass. I have now lived with the consequences of chronic sarcoidosis for many years, and I realized there was more to say.
I’ve learned a lot from my illness. In some ways, it has been a gift. It’s not a gift I would have picked out for myself, but when things were easy, I didn’t realize how tough I was. When you live with chronic illness, you get comfortable with being uncomfortable. There is an upside to having your life turned upside down.
If I were to give you just one piece of advice, it’s this: Pain is inevitable, but suffering is optional. Be the best person you can be, because that is what transforms a sufferer into an endurer.
If I were to give you two pieces of advice, the second one would be to finish this book. I’ve done my best to make it entertaining and useful, whether you’re sick of just have a sick sense of humor.
Want to learn more about Karen Duffy’s journey? Read “Karen Duffy on Sarcoidosis.”