Customer Reviews

She Came to Live Out Loud: An Inspiring Family Journey Through Illness, Loss, and Grief

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This is an unusually intimate portrait of an unusual woman dying of breast cancer. The author planned such a portrait before meeting any likely subject. Then she was introduced to Anna Johannessen and the wheels began to turn. Anna was an inveterately cheerful extrovert, ensconced in a loving circle of family and friends - a survivor of stage 1 breast cancer. Her life had been blessed up until the day it was discovered that her cancer had returned. She and her supporters then endured three years of a gradually failing struggle to buy her more time. MacPherson, instantly won by Anna's frank and appealing friendliness, came on board and followed the family through Anna's ordeal, her death, and the two years of grieving beyond. The choice of the title of this book, "she came to live out loud," I suspect is not simply inspired by Emile Zola's proclamation quoted on the flyleaf but by the fact that much of what appears in the book is transparently adapted from tape recorded sessions. We hear Anna's natural speech, complete with tacking back and forth, switching topics, qualifying, digressing into humorous asides or turning tearfully squeaky. Telling exchanges between members of her inner circle, moving sessions with her children's bereavement counselor, Dottie Ward-Wimmer, and spontaneous outpourings at her memorial service also appear. In reading the account, we become virtual eavesdroppers in the Johannessen household. The book is valuable from a dozen angles. The bereavement counselor's advice about children facing the death of a parent is exceptionally wise and comforting. The vignettes of Anna's treatment are informative and at times chilling. Discussions of timing the switch from aggressive treatment to palliative care are important to any caregiver to the terminally ill, and as is the detailed portrait of the dying process. Finally, the subject herself, Anna Johannessen, is an inspiration to stricken families and a range of cancer survivors. My only worry with readership is that for some women in Anna's shoes, badly in need of the inspiration she might offer, Anna may appear too brave, too loved, to surrounded by caring supporters, in a word not enough like themselves to turn to for comfort. Plus the fact that, despite everything, she dies. Nonetheless I would recommend it to the full range of potential readers.

[In the following excerpts, Anna and Dottie Ward-Wimmer discuss whether her dying at home will make home a traumatic place for the children] Anna: "Once I'm in morphine land, I'll be pretty whacked out. I just don't want to traumatize them. I think it's going to be bad enough." Dottie [taking deep breath]: "Kids are traumatized by things they don't understand, by things they can't participate in - that they have to stand there and watch and they can't do anything about. ...Children are not necessarily traumatized [by experiencing dying]. I've worked with literally hundreds of families that have made these kinds of choices and when the decision is one that's made by all of you together, it's perfectly appropriate. ... And in terms of a memory of you being bloated or not - again, those kinds of stark pictures that you view are sudden drastic shocks. Like when the last time they saw you, you were fine and healthy in tennis shorts... But they're looking at you every day. They're not looking at you physically. They're looking in your eyes. They're cuddling up to you. They don't know whether they're laying on a boob or on a rib. They're laying on Mommy." Anna: "I never even thought about that. They've been wonderful, like when I can't get out of bed, they love to feed me dinner. They call me 'baby bird.' 'Feed the baby bird.' Ellery, I've used that boy to walk. He's said, 'Here, Mom, lean on me.' And I've been able to support myself with my son, my eleven-year-old kid, holding me up." Dottie: "That's good for them; allowing them to help is very important. It's a terrible feeling to be shut out."... Anna: "I never thought...all I kept thinking about was all they'll see and how they won't be able to go in the room and they'll start to hate the house because I died there." Dottie: "Talk to them about it. Again, you're a creative family - are you kidding? You'll do it in the garage if that's what's right."

Myra MacPherson's book about Anna Johannessen and her family is the most moving and most inspiring story about how she and her friends and family deal with her terminal illness I've ever read. It's an inspiration to deal with death and dying much more openly and honestly than people usually do and at the same time a stinging indictment of the insensitivity of the medical establishment and the health insurance industry. "She came to live out loud" touches the heart without being a tearjerker in any way. I first heard about this book on an NPR talk show and was moved by the way Ms. MacPherson talked about her meeting with Anna and how she had been welcomed into the most private moments of the family. A wonderful book, I recommend it wholeheartedly. (By the way, you can listen to the archive edition of The Diane Rehm Show by going to Http://www.wamu.org/dr/shows/drarc_990222.html#thursday)

Families across America are dealing with the fall-out from cancer and how the loss of one family member affects all. This book is about one mother's journey (and thus, her family's) through terminal cancer. It's thought-provoking, heart-breaking and yet inspiring. Once you've read it, you will have a better understanding of what your friends and family members are going through as they deal with their cancer. I read it after my father was diagnosed with terminal liver cancer. As a result, I was better able to "live out loud" with him and my mother in the last months we had together.

I wasn't as taken with this contribution to the "grief industry" as some others seem to be. The author's stated objective was to write about "a subject of denial" in today's society. One would therefore presume that her intent is to add to the field of knowledge in this area. However, having read similar material, I thought she presented little that was truly original. In fact, at times it was such as exercise in sentimentality that anything worthwhile was simply overwhelmed. Additionally, the author's shifting agenda from chapter to chapter irritated me. Was this book designed to be a paean to its human subject, to expose the "shortcomings" of the American health establishment, as a practical end-of-life treatise, or to illuminate the conflicts and emotions of those forced to journey with the person who is terminally ill? The author seemed to want to address all these things, but because she threw everything, including the kitchen sink, into her narrative, no subject seemed completely developed.

I thought the sections in which Anna, Nils, and other family members and friends were simply allowed to speak, without interjection by the author, were the most effective parts of this book. I also found the author's unnecessary overuse of the superlative in her descriptions of Anna's personality and behavior rather off-putting. Ditto for the author's minute-by-excruciating-minute account of Anna's final days and hours, which I found so detailed as to be intrusive. I don't really need or care to know that one friend was "gently and lovingly" cleaning off her bottom while another friend was hovering poised with the ointment! God save me from ever having my final days described in such graphic, personal terms after I have been rendered incapable by an illness of the ability to edit what is said! And I'm curious about the in-laws (Nil's parents). They are barely mentioned, and remain fleeting shadows throughout the book. But surely they were not as unsupportive as this narrative makes it seem. Did they simply decline to participate? If so, why?

Of course, no book of this nature would be complete without the requisite bashing of the government and medical establishments. Medical professionals are lumped together and described as aloof, impersonal, inefficient, careless, and so forth. But these are hardly original criticisms, and are once again presented with no effort at a solution. The fact is that today, doctors are responsible for presenting an array of therapies that they never had in the past. Does anyone really want to go back to the mythological "good old days" when all a doctor had to offer were some herbs and soothing words? Yes, I would want a doctor I can interact with on an equal basis, who will objectively and compassionately discuss my options with me, and who stays on top of his profession. But I wouldn't want to crawl into bed with him, and I would never be so selfish as to expect him to hold my hand if he can no longer help me, having done the best he could, if in so doing he was taking time away from helping another patient who still had a future! As for "arbitrary" government rules and regulations, well, if you want to feed at the public trough, you have to accept some oversight and limitations. It's called competing demands for finite resources.

If people want to read a book on this subject that truly offers unique insight, is compassionate and at the same time educational and on point, I recommend Jerome Groopman's "The Measure of Our Days: New Beginnings at Life's End", or "A Private Battle" by Cornelius Ryan (unfortunately out of print) as distinctly superior alternatives to this book.

Eight weeks ago, my sister died from breast cancer. Her valiant fight led her through a double mastectomy, chemotherapy, two bone marrow transplants, radiation and cervical fusion. McPherson perfectly captured the marks of fear, trust, frustration, anger, peace, love and hope that such a journey entails. I was deeply touched by this book as it epitomizes my firsthand experience. Like Anna, my sister was strong and independent, almost until the very end, when she had to relinquish the reins and let others do for her. It was my honor and priviledge to do what I could. That final trip was sacred and something I will never forget. Society does not like to confront serious illness and death, but McPherson paints a beautiful portrait of Anna, her family and friends that comforts despite the pain and loss.

MacPherson's recounting of Anna and Jan's years dealing with illness, death and grief inspires and sets standards for living with death. For those of us who have given care to loved ones during the slow decline into death, the story is at once both familiar and new enough to hold lessons. Anna and Jan, and Myra MacPherson, provide firm evidence of the need both for living positively with grave illness and for taking control, based on informed knowledge, of the entire process of dealing with illness.

Unfortunately, the tale is of educated and proactive adults taking control of the process and, like our society, does not address the many many people in the US who do not know how to take control of the process and have no advocates working on their behalf when dealing with the medical industry -- but that's another book. And a book I hope Ms. MacPherson will write! Someone needs to!!

This book inspires, educates, and provides direction for individuals and families who face choices for living with life-threatening illness. As a family studies teacher, I encourage students to read books that give them more options for living their lives. Myra MacPherson has written engagingly about the realities of living with a life-threatening illness and surviving the death of a family member. Unlike other writers, MacPherson expands the account of Anna and her family with information that enables readers to make informed decisions about illness, health care, caregiving, helping children cope, hospice care and grief support.

As a Hospice volunteer, I think that this book should be required reading for all who might be affected by cancer as a patient, caregiver, or friend. The author's ability to bring us into the family without intruding on their privacy is something that we all should be grateful for since it provides us a means of thinking about what we ourselves would do in similar circumstances.

I have worked with the elderly population for many years and have found the most rewarding part of my job is to be present during the final hours of their life.It is a precious gift that many of the families have allowed me to share with them.It can be a very scary and sad time for most,but if you can get beyond that, it can be a wonderful experience,like Anna's friend had. Anna gave them a most precious gift. It's nice to hear that families with no real religious belief can find comfort in their own way during a stressful ordeal. This type of story is a must read to help remove the stigma of death and dying. A few years ago I read a similar book "Between Hello and Goodbye" by Jean Craig

MacPherson's book takes readers on a journey through the process of dying...the frustration, the anger, the pain endured by both the victim of disease and her family and loved ones. Compelling reading, so well written. MacPherson gets into the heart and soul of "Anna."