SHE CAME TO LIVE OUT LOUD : AN INSPIRING FAMILY JOURNEY THROUGH ILLNESS, LOSS, AND GRIEF

Rating:
Summary: Insightful look at terminal illness
Review: 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.

Rating:
Summary: An inspiring role model of a family dealing with illness
Review: 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!!

Rating:
Summary: A touching book about a brave woman's struggle with cancer
Review: 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)

Rating:
Summary: Terminal cancer, a tape recorder, and some sensitive souls.
Review: 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."