Review by: Elaine Adler
Cell 2 Soul. 2006 Summer; 2(2):a22
Harper Collins (2006); 352 pages; ISBN: 0061120618
Like the rest of us, Julia Fox Garrison took her life, and all her body's functioning and capabilities, for granted. In the opening chapter of Don't Leave Me This Way: Or When I Get Back on My Feet You'll Be Sorry, a third-person narrative describes a person who could be any of us living out a busy day. She maneuvers through traffic, plans ahead, devises strategies to make work go smoothly, and good-naturedly interacts with colleagues. We quickly get caught up in her tenacious, capable, and positive being. Someone who gets things done. Someone who is likeable.
In the midst of it all, an excruciating pain in her head signals that life will never be the same again. Julia has the presence of mind to sense that she's having a stroke and asks someone to drive her to a nearby hospital.
The book shifts to the second person with the sentence, "Someone is telling you to wake up." It's an effective transition to her new life, one of an impatient and determined patient. It also makes you feel as if she could be talking about anyone, that every person reading this book can put themselves in the situation and learn from it.
Not only can Julia not move or feel anything on her left side; she can't process visual stimuli on that side. A clock has half a face, just as her body is half a body. Suddenly, her immediate needs and her future are all at the mercy of those around her.
Julia takes us on her rocky road to retrain her body. She is ahead of the game with a built-in support system in her loving husband, parents, eight brothers, and some devoted and whacky friends, all of whom rally 'round to bring her cheer, edible food, humor, and encouragement. Her prolific ability to see the humor in all situations makes the journey surprisingly enjoyable and funny, even when describing her many falls or when revealing inadequacies in the medical system and some of its providers.
When physicians from different disciplines each proposes his own favorite diagnosis for why a healthy 37-year-old woman was stroked by a massive brain hemorrhage, Julia is subjected to a series of often painful tests and indignities. In the beginning, afraid and unsure, Julia and her family accept the pronouncements of doctors who tend to give orders with little explanation or discussion. One, whom Julia labels Dr. Jerk, insists she has a disease that presents different symptoms and cannot be verified, yet he proposes nasty tests and chemo treatment for life because he's so sure of himself, telling her she'll die without it. Later, when she asks for a second opinion, he sends her to a colleague who quickly confirms the diagnosis with a cursory perusal of her records, without examination or tests. Julia never accepts their theory, and eventually they are proven wrong.
Medical staff didn't know what to do with Julia's sense of humor and approach. Unlike Stephen Schneider, a scientist who, in his book The Patient from Hell, describes how he and his wife researched every aspect of his disease, using scientific principles of analysis to question every suggested treatment while lobbying for new and sometimes more expensive alternatives, Julia's responses came from a place of intuition and inner knowing. For doctors who deal with facts and knowns, her refusal to accept some of their diagnoses, tests, medications, and limitation prognoses, just because she had a gut feeling they were unfounded, resulted in frustration and demeaning judgment.
Had they chosen instead to see Julia as a fellow human being, to have compassion for this person whose life had just been turned upside down, to listen to her concerns and feelings, to understand that she knew her own body and trusted her intuition, to laugh with her instead of accusing her of being in denial, to include her as an integral part of the treatment team, they would have been put in touch with their own humanity and grown from the experience. They would have appreciated this vibrant, funny, loving woman who worked so hard to regain her ability to walk, to learn how to hold her left arm so the shoulder didn't fall out of the socket, to make the muscles on the left side of her face work so she would look more symmetrical. They would have rejoiced with her as she proved so many of their dire predictions wrong. They would have become better healers for their future patients. Fortunately, she did have one doctor, her neurologist, who embodied all these positive characteristics and made up for all the others.
From the beginning, Julia refused to allow messages of gloom and doom to surround her. No pity and sadness. In her upbeat way, she promoted positive thinking. She assumed she would walk, maybe even roller blade. She wanted to be a mother to her son and a wife to her husband. When finally released from rehab, still unsteady on her feet, she decided not to have handicap modifications made to her house because she was determined not to have a handicap.
A shift to the first person in the final section of the book allows Julia to speak to us personally about what she has learned from her experience. With her ability to see the bright side, she senses that she is a better person for it all, that she has been given the gift of recognizing her blessings. She now understands what we all can learn if we step back from our hectic pace, hopefully without requiring a devastating illness or accident: that life is a gift, that we are meant to share love and kindness with others.
Julia's determined reactions are lessons in how to take charge, believe in ourselves, rise above "the system," and hold on to our right to hope and to be treated as respected beings.
Don't Leave Me This Way is a powerful and profound resource for both the medical community and for patients. It will help make doctors better doctors, and patients better patients.
For more information about Julia Fox Garrison, visit http://www.juliafoxgarrison.com/home.htm