on June 21, 2008
Ms. Manguso has written a medically graphic but affecting account of her battle with an auto-immune disease. Written in brief paragraphs with short chapters, the author is clealy recalling a bad dream that she rather not recall. A poet, her writing is lyrical and conversational. Once the reader starts her story, you will not put it down and it is easily read in one sitting. But it is a book that you will come back to.
Sarah Manguso, afflicted at age twenty-one (in 1995) with a Guillain-Barre-like syndrome called CIDP, wrote The Two Kinds of Decay after seven years of remission from her illness. (p 2) "For seven years I tried not to remember much because there was too much to remember, and I didn't want to fall any further behind with the events in my life." Of the disease, the reader learns (p 19) "The condition may resolve spontaneously, relapse and remiss indefinitely, or progress and terminate in death." Talk about an uncertain future. In this succinct, simply-written story of a life, Ms. Manguso tells all: of her initial symptoms (numbness in her feet); treatment (and mis) including hours spent undergoing apheresis (p 10) "the process of separating blood into its components" and the painful procedure of having a permanent line surgically implanted in her chest (the apparatus shown on the cover); interactions with hospital staff, friends, family and complete strangers; the effects of the various treatments on her body; and just plain living with a rare, rotten, debilitating condition. Of a doctor, who tries to quantify her high level of suffering, she writes (p 83, 84) "he didn't understand yet that suffering, however much and whatever type, shrinks or swells to fit the size and shape of a life." Near the end of the book she shares (p 171) "Having spent my twenties expecting to die, I turned thirty and arrived in the afterlife with nothing left to do." She's done a lot since then, notably: running, writing, living and loving. She ends with a line explaining the title (I won't spoil it) and shares what she learned from years of agony, (p 183) "This is suffering's lesson: pay attention." The nine sentences that follow are equally excellent. Also good: Lucky Man by Michael J. Fox, Mountain Beyond Mountains by Tracy Kidder and There is No Me Without You by Melissa Fay Greene.
on April 10, 2010
This is an unsentimental and unapologetic memoir of illness. The poetry here left me breathless. The disease Manguso describes is a terrible one, but she weathers it gracefully.
The time line is not a linear one - events in the book take place as if they are just foggy memories and not a plotted story - a realistic and satisfying take on the memoir narrative.
Every word is carefully placed, like an IV or a scalpel. Manguso is a surgeon-poet, wasting nothing. Very precise, very beautiful, very painful.
I've read this book twice now. It was recommended to me by a stranger at a party when I revealed my own recent diagnosis of kidney failure and an autoimmune disease. The book makes me feel hopeful - if she could do it, I can do it. It makes me feel courageous. It offers solidarity in the way few others can - without pity, without tears, without fear. And yet, the book makes me cry.
The story of an illness could be trite. Manguso avoids cliche and does not tell us she has learned to be a better person, that she has found God, or even that she is bitter. She tells us simply that illness forces one to live in and for the moment. While she doesn't herald this epiphany as a triumph, I certainly do.
on July 6, 2008
This book is a compelling read. It's a testimony to one woman's resiliance when the terrible thing happens to her, not to some stranger.
Manguso has the courage to revisit her devastating illness, and the wisdom to find the ironies, the lessons, and even the humor in her experience.
Through her sharing of the story of those terrifying sick years, she lets us see the indomitable spirit and the sense of humor that enabled her to survive them and heal.
She juxtaposes pictures of illness against the lyrical beauty of her writing. I find new treasures whenever I reread it.
on July 16, 2008
This is a short book about Sarah Manguso's experience with a strange autoimmune illness, which began suddenly during her freshman year at Harvard. You could easily read it in an afternoon, but it might take longer since there are so many beautiful passages to go back and read again.
She has said that she intentionally did not write about the disease after it began; it must have been too difficult. In reading this book, I got the impression that as she wrote, she was actively rediscovering and redefining her illness and what her life became in the wake of being sick.
Ms. Manguso is an award-winning poet, and the fantastic writing alone is worth the price of admission. The chapters are often only a page or two, the paragraphs only a few lines. The writing is simple and insightful--whether she is discussing a mundane detail, humiliating experience, or a scientific technicality. She is capable of being heartbreaking in one sentence and uplifting in the next.
I should admit that I am a medical student (final year), so perhaps I got a double benefit. Her description of illness is fantastic. If I had learned about this disease from a textbook, it would have been just one of hundreds of cold facts in my brain. But from her description, I began to imagine a mysterious illness that went beyond mere words. I am sure that I now have a better understanding of patients with long-term disease. Moreover, for anyone who has to deal with illness, Sarah Manguso has likely put into words some of the complicated, frustrating feelings that accompany repeat trips to the doctor and hospital.
"My blood plasma had filled with poison made by my immune system. My immune system was trying to destroy my nervous system. It was a misperception that caused me a lot of trouble.
All autoimmune diseases invoke the metaphor of suicide. The body destroys itself from the inside."
There is nothing easy about distilling the mental anguish and bodily pain of an incurable, debilitating and life-threatening illness into the space of a lyrical thought, or creating a prose poem from having one's veins drained of poisoned plasma and infused with fresh plasma, but that is precisely how Sarah Manguso writes in her spare, wrenching and elliptical The Two Kinds of Decay: A Memoir.
There is no lack of illness stories in the vast world of the personal memoir and doctor-patient dramas certainly abound. Patients or caregivers tell of physicians who are heroes or villains. It is this conflicted relationship between patient and physician as well as the detailed reporting of: symptoms, diagnoses, misdiagnoses, testing, surgical procedures, prescriptions, prognoses, healings and failures, which usually drive the conventional illness narrative.
But Manguso cuts through the stereotypical and the usual clichés. With the precise language of poetry and a gentle sense of humor she captures lyrically that which is endlessly elusive and ultimately incommunicable ~ her pain.
"...suffering, however much and whatever type, shrinks or swells to fit the size and shape of a life."
Pain is a very personal, subjective state of experience. Only the person enduring pain can understand their pain, but how does one accurately describe their pain to others? Manguso succeeds brilliantly in communicating her interior feelings by involving the reading in them...
"I was very slowly infused with several liters of fluid that was colder than the rest of my body. I need to describe that feeling. I want to write a metaphor that will make a reader stop reading for a moment and think, `Now I understand how cold it felt.' But I'm just going to say it felt like liquid, thirty degrees colder than my body, being infused slowly but directly into my heart, for four hours."
During her junior year at Harvard, Manguso was diagnosed with a very rare neurological disease akin to Guillain-Barre syndrome~ chronic idiopathic demyelization polyradiculonneuropathy or CIDP, a recurring autoimmune disease that left her paralyzed for weeks at a time and unable to care for herself. The paralysis could only be reversed through an arduous procedure called apherisis which is essentially a filtering or cleansing of the blood. Left untreated CIDP progresses from the limbs to the diaphragm, leading to suffocation and eventual death.
The specifics of this rare disease are alarming, extreme, urgent and bizarre but Manguso as a gifted and accomplished poet communicates the brutal details of her ravaged body lyrically. Yet her approach is prosaic, analytical and evocative. Decay is a collection of Manguso's memories, a reflection of the way her mind recorded the trauma of her illness over a period of nine years. She recounts her agonizing ordeal in a series of brief vignettes composed of prose that is brief but potent. With a voice that is clear, often dead-pan, sometimes funny, and never self-pitying, she tells of her nine long, terrifying years of moving from illness to remission.
"There are only a few things to remember now and the lost things are absolutely, comfortingly gone."
The Two Kinds of Decay: A Memoir is a book of grace, so utterly resonant and poignant, I cried often. As a patient with a chronic neurological disease myself, I found comfort and inspiration in this story. It is written in a fashion that delivers great bursts of light. Manguso expresses beautifully her deeply felt understanding of the mechanics of surviving a serious illness...that ~
"You can't learn from remembering. You can't learn from guessing.
You can only learn from moving forward at the rate you are moved, as brightness, into brightness."
on April 6, 2010
First things first, I have a bone to pick with a previous reviewer. "Self indulgent?" "Sarcasm a real turn-off?" "Fighting the wrong fight?"
Doesn't it seem rather bold to judge the reactions of another to anything as horrible as a crippling painful chronic disease? Isn't it impossible to judge the anger of another who has had a major portion of their developmental years lost forever?
Sarcasm, gallows humor, whatever you call it, is a healthy coping mechanism and an honored literary tradition. Anyone who has spent time among law officers, soldiers, health care professionals or social workers knows that such humor is an invaluable tool for staying sane and sober in horrific situations.
I am doubly qualified to write this review. Having worked as a registered nurse and a nurse practitioner for twenty years, I am recovering from Guillain-Barre Syndrome (AIDP), and will hopefully not join the few patients who progress to CIDP. Only time will tell.
Having spent months of recovery with lots of time to read (once I could hold a book again), I read through textbooks, journal articles, teen fiction (yep), and numerous memoirs relating to AIDP and CIDP.
A few paragraphs into Sarah Manguso's book I came to the pleasant realization that this wasn't yet another memoir, but was poetry. Poetry as in few words conveying the lucid observations of a keen mind trapped in a failing body, the lonely and terrifying essence of it all.
This is the best account of demyelinating disease I have yet to read. I would heartily recommend it to friends, family and health care providers to help better understand the first person reality of living with these conditions. I would also recommend it to fellow-travelers (fellow sufferers, if you must) as a valuable aid for self-reflection and self-recognition.
Thank you Sarah Manguso. I cry, I mourn, and my spirit is uplifted by your work of beauty.
on July 8, 2016
Reviewers have cited examples by which they were affected. Mine: the honesty. Yes, "spare", "brutal", "direct" as others described, but what I read was simple narrative, uncloaked in additional verbiage. I don't know that writing seemingly without caution is common; in retrospect, I'm surprised she did it and got away with it. I heard anger, cynicism and sarcasm spoken not to develop a story line but as though straight from the mouth of a friend in a hospital bed reacting to pummeling. I reveled in it.
on March 14, 2011
A neuropathy patient shares her memoir from the real world of the patient in words beaming with the raw honesty of unpolished realism, humor inspired by places, people and experiences while spreading realistic hope which neuropathy patients will appreciate. Whatever type of "pod" people (neuropathies assumed causes) you have been invaded with, you will identify with many of her experiences while learning to laugh at life's ironies. Sara brings great humor to her writing, humor springing out of the frustrations and successes of modern medicine and the complex skilled and unskilled humans who come to the place we live. Hope in people explodes as Sarah writes of a touching episode of the developer of a new medical machine and during his visit she shared the wonderful things the machine was doing for her and when he left the room bursting with unspoken joy over his invention, he returned giving her a banquet of flowers. I cried happiness. She ends the book with "This is suffering's lesson: pay attention. The important part might come in a form you do not recognize." If you are a neuropathy patient struggling as we all do with the experience, reaching for hope somewhere and the loss and gaining of meaning, you will love this book. LT.COL. EUGENE B RICHARDSON, USA RETIRED NEUROPATHY PATIENT WITH CIDP AND AUTONOMIC NEUROPATHY FROM EXPOSURE TO AGENT ORANGE IN VIETNAM 1968.
on July 10, 2008
An elegant little prose narrative of a rare fatal disease, told by the patient, a poet, who has been in remission for 7 years, and who seems to be a very bright young woman with a clear knack for writing, and for understanding. I bought this book entirely because my hero Garrison Kieller reported in a column that he was reading it. Then I found that the rare autoimmune disease described was almost the same as the one my wife suffered through 5 years ago - now 2 years in remission. The treatments have improved significantly in the short time between, and Sarah's were much more experimental. Written in almost poetic style, with short chapters and short sentences of well chosen word, spaced for effect, this worthwhile little book is a special sharing of the life of an extraordinary young woman, told with humor and candor at a time of sadness, fear, pain, love, and learning.