Karen Duffy

“We are all temporarily able bodied.”

I was looking for books on sarcoidosis, a fairly rare disease that someone I know has recently been diagnosed with, and came across this book by Karen Duffy. I’d never heard of Duffy before, but for a time she was apparently involved in the film industry as an actress in lesser roles in movies I’ve never watched. She was also a VJ for MTV, which has never been part of my cable TV package in Canada, and a model in Revlon ads, which I can’t say I’ve ever paid attention to. As a young woman, Duffy worked as a recreational therapist in nursing homes. Her most important qualification for writing this book, however, is that she was stricken with sarcoidosis in her late twenties/early thirties. It ravaged her nervous system, required years of chemotherapy, and demanded a great deal from her.

Sarcoidosis, as Duffy explains in her book—a combo of memoir, humour, and self-help—is a multi-system disease. It's known to more often affect those of Scandinavian descent and African Americans, and women are more likely to be diagnosed with the disease than men. The most common presentation is in the lungs, but any of the body’s systems and organs can be affected—the skin, eyes, liver, heart, and nervous system. An unknown pathogen—bacteria, virus, fungus, chemical, or some other irritant —enters the body, and the immune system mounts an excessive response, attempting to wall off the offending agent. Granulomas form. These are inflammatory lesions: clumps of immune cells, which can turn fibrous and become scars. As you might imagine, having scars replace normal tissues in your lungs, eyes, heart, or nervous system can have some pretty serious impacts on the structure and function of those organs.

Duffy is disabled and lives with chronic pain from the damage to her nervous system. She uses a cane and walking cast, has neuropathic pain in her hands, is unable to turn her head to the right, and has impaired vision. She is housebound approximately 50% of the time, and she averages a surgery a year. Her book focuses mostly on the ways in which she copes psychologically with pain and physical limitations. In the introduction, she identifies the big problem with illness memoirs: they try too hard to be inspirational. “A catastrophic illness can’t always be equated to a great spiritual awakening, “ Duffy writes. She commits instead to offering readers some things she’s learned from her illness, including the adoption of an “eccedentesiast” stance—that is, putting a smile on over the misery. She is “an optimistic catastrophist.” Unlike healthy people—who possess a ‘normalcy bias’ that allows them to believe that because they have never experienced serious health issues, they never will—she lives with an unpredictable illness. Consequently, she has “a heightened awareness of looming catastrophes,” and it’s up to her “to make the best of things before they go sideways.” Being the best person you can be, she writes, “transforms the sufferer into an endurer.”

Pretty much every chapter concludes with a graphic, something a reader could, if so inclined, clip out and use—for example, an eccedentesiast smile mask to wear over his own mouth and a “L’eau de Old Geezer” label to tape over his cologne bottle. These are evidently intended to bring notes of levity to the book, and while most of them didn’t do much for me in the humour department, Duffy’s list of handy excuses to get out of social engagements did make me smile, and some of her personal anecdotes really are funny. This book is about serious matters, yes, but it is lively, thought-provoking, and never grim. And it’s not just for sarcoidosis patients either; it could be helpful to anyone facing or accompanying someone dealing with a chronic or life-changing illness.

The author addresses a wide range of topics in understandable prose: the difference between acute and chronic pain, and the widespread disability caused by the latter; the fear of aging and illness because of their association with death; service animals; friendship; being a caregiver to others when you yourself are chronically ill; overcoming the inertia of long-term illness through exercise; cultivating appreciation of small moments and acknowledging the assistance and challenges others face through letter-writing; stoic philosophy; finding ways to contribute to the lives of other people; the power of reading; and the doctor-patient relationship.

Duffy is clearly well-read and regularly includes odd factual tidbits that relate in some way to chapter topics. For instance, the history of Amazing Grace comes up when Duffy discusses her aversion to yoga and some instructors’ fondness for playing that hymn at the end of class when students lay meditatively in savasana, “pose of the corpse.” The religious song was composed by English slaver John Newton, inspired by his terrifying and supposedly spiritually transformative experience aboard a ship full of human cargo during a violent storm on the Atlantic Ocean in 1748. In reality, Newton continued as a slaver for many years after the storm and only renounced his profession in 1788. This and other tangential information delivered throughout the book often surprised and interested me, though I acknowledge that some might experience it only as padding.

Duffy does achieve what she set out to do. Hers is a realistic, grounded text that has the potential to help people cope with adversity. It reminds readers about some of the important things in life when the going gets very tough.… (más)

Karen Duffy’s second book, Backbone: Living with Chronic Pain Without Turning into One, is meant to be a funny and motivational read. Duffy has certainly lived through more days of illness and pain than not. And she has some celebrity cred which adds a bit to the story, but doesn’t overwhelm her perspective.

Duffy lives with chronic sarcoidosis, a rare disease of the central nervous system. It sounds incredibly painful and debilitating. Despite that, she’s a hockey mom and volunteer, among other things. I heartily commend her for giving back to the world in any way she can. Duffy takes her faith and its maxims seriously. But she makes jokes about nearly everything else, including some wildly cringe-worthy moments as a hospital chaplain in the making.

Unfortunately, I just didn’t care for Duffy’s writing style. It’s just not as funny as she thinks it is. Plus, there are times when she’s incredibly tone deaf. And yet, she means well as she talks about giving back to the world. Long story short, Backbone was a mixed bag for me.

It would have benefitted from a better structural framework. I struggled to feel the flow from chapter to chapter. For example Duffy heads right from a brief Teddy Roosevelt bio into a chapter of style and fashion advice for the chronically ill woman. Wow, what?

I have to admit that by the third chapter, I was already frustrated at how often Duffy quotes other people in Backbone. And it never stops. This book of one woman’s wisdom is overfilled with OPW (other people’s wisdom). Ultimately, it made the book feel amateurish and like she was padding the content to reach a page count.

Duffy is one tough woman. She’s figured out the upside of things that most people hope to avoid until their last few decades (or later). When she wants something, she figures out a way. And on the flip side, Duffy knows that some days simply reading a great book will be her best accomplishment. It’s all about balance when living with chronic illness and pain.

If you’re looking for a quick book with a unique perspective on living well with chronic illness, this is a decent choice. Amazing it is not.

Thanks to NetGalley, Skyhorse Publishing, and Arcade Publishing for the opportunity to read the digital ARC in exchange for this honest review.… (más)

3.5 Whenever I see a book about chronic pain I tend to grab it, hoping for some new information or novel insights. I can't say there was anything really new here except I definitely admired the author.
Chronic pain can be wearing, especially if you have a condition, as I have, where you don't necessarily look sick. Duffys life and the way she manages her pain is inspirational in that she has found things that work for her.

She does reiterate the importance of getting up and moving, walking to the best of your ability, daily if at all possible, three times a week if you can't do daily. Walking has additional benefits, on retaining memory, relieving stress and other healthful benefits. Watching her son play hockey and she thinks to herself that if her son, as a goalie, can handle the pain he endures, she can handle hers. She quotes philosophers she admires, and uses as inspiration, daily saying to keep her motivated. There is much in this book, quite a bit of it common sense, though sometimes when in pain it is hard to put things into practice. Misdirection works, actually works best for me, reading to get my mind off myself, is my drug of choice. Of course, there are drugs to help and in worse case scenarios these are put into use.

I did enjoy reading about her life, how she has managed and the things she goes through daily, just to make it through. I admire her will and perseverance.

ARC from edelweiss… (más)