CFW Newsletter - Edition 6

Breathing for a Living is an appropriate title for this haunting book by Laura Rothenberg because breathing indeed becomes the focus of the author’s very existence.

This is a brutally honest and harrowing look into the psyche of a young woman who is trying to accomplish the Herculean task of balancing CF and its complications with the lifestyle and demands of college. Written as a memoir for one of her classes at Brown University, when we first meet Laura on the day before her 19th birthday, she admits to being in the midst of a mid-life crisis. It may seem like a melodramatic claim. However, as she points out, mid-life for PWCF is actually more like 15, so her breakdown is technically a few years late. She seems similar to other students her age and it is remarkable that she is able to swim 30 laps (at which point I asked myself, “Do I have the same disease?”).

However, unlike most 19-year-olds, she says she “thinks about death every day” and is faced with a life-altering decision: Whether or not to have a double-lung transplant.

Readers beware: Nothing in the book is candy-coated. Laura’s candor makes her willing to talk about the things many of us probably think but do not vocalize. Her writing is so straightforward that the reader sometimes feels like a voyeur intruding on her most intimate thoughts.

Laura writes, “I can’t write about the future. I can’t even make one up because I fear I will jinx myself.” She writes about friends who had CF and died and the feeling of being the “only one left.” These are the kernels of insight Laura shares throughout the book that make it helpful to people who wonder what it is like to live with a disease like CF. It is also reassuring to those of us who have CF to know that we are not alone.

As Laura’s health begins to decline, she writes: “This is what I get for living longer. Instead of a thousand dollars, or a car, or at least a shopping spree, maybe some flowers or an award I just get more medical problems.”

Loss, pain, guilt, loneliness, being left behind or forgotten, a fear of making plans for the future – these are just some of the emotions Laura expresses shares eloquently as she considers a transplant. She writes, “Maybe it’s time. I need to be strong physically and emotionally. But I need to be ready. I have to go into this believing that I have no other choice and I’m not sure I’m quite there yet.”

Only a month later she decides to go for it, and she recounts the excruciating period of waiting for the call for lungs while her health declines daily, drastically. Laura wrestles with profound loneliness and sadness as life goes on around her. One minute she is surrounded by friends but the next minute others who do not keep in touch hurt her. She admits, “What scares me the most at this moment is the loneliness…I don’t want to be the chore on the list of things to do.” I think this is a concern most PWCF can relate to.

To be honest, I tried to read Breathing For A Living once before. I got to page 54 and stopped. I know exactly why I stopped: It made me uncomfortable. On the one hand, I felt like a rubbernecker driving by a gruesome car accident. I know I should not stare, and yet I want to see what happens. On the other hand, I lost patience and did not feel as sympathetic toward Laura as I thought I would. At the risk of sounding judgmental, frankly, I found the author to be prone to self-pity and a sense of entitlement. Laura clearly lived a privileged life that protected her from some of the stresses many PWCF face, such as financial issues and day-to-day real life responsibilities. She seemed to have had an amazing support system, but I am not sure she realized it. I was also surprised that Laura’s donor was only mentioned briefly. The fact that getting new lungs would depend upon the loss of another’s life seemed almost lost.

I also must admit that there were a few holes I would have liked filled. For example, we learn a lot about the complications and rejection Laura faced within months after the transplant, but not about those initial weeks with her new lungs. Toward the end of the book we also learn that Laura fell in love, but we do not know how, when or where. She provided so many other details; I found it odd that we learned none of the particulars about the mystery man that won her heart. And, finally, Chapter Five – 61 pages – 25 percent of the book - is dedicated to testimonials from friends and family about Laura’s ordeal, how it affected them, etc. Call me insensitive, but one or two accounts would have sufficed. I found these recollections repetitious and tedious rather than touching.

Of all the reviews listed on the book’s jacket, the only one I truly can relate to is, “Her voice echoes in the reader’s mind long after the book is closed.” It is true: Laura’s words were like an onerous weight I carried around with me for days after finishing her book, making me hope and pray I would never be in the position of breathing for a living.

Published by:
Hyperion Special Markets
77 West 66th Street
New York, NY 10021
www.HyperionBooks.com

ISBN 1-4013-0059-6