Karen Duffy
Autore di Model Patient: My Life As an Incurable Wise-Ass
Sull'Autore
Karen Duffy has worked as an actress, model, journalist, and MTV veejay
Opere di Karen Duffy
Opere correlate
Etichette
Informazioni generali
- Sesso
- female
Utenti
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Statistiche
- Opere
- 10
- Opere correlate
- 1
- Utenti
- 99
- Popolarità
- #191,538
- Voto
- 3.7
- Recensioni
- 5
- ISBN
- 17
- Lingue
- 1
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.… (altro)