Thursday, February 06, 2014

Breathing For A Living - Rothenberg (Throwback Thursday Review)

When Laura Rothenberg was born, in 1981, the average life for expectancy for a patient with cystic fibrosis was 18 years old. Now, thanks to advancements in diagnosis and treatment, the average life expectancy is 35 to 40 years. And while this is a significant difference, it is still a very, very poor prognosis.

Rothenberg spent her entire life fighting the disease and facing the knowledge that she would die young. She even admits to having spent her childhood planning out her funeral and trying to figure out how to ensure that she is not forgotten after her death.

Effectively, Rothenberg published a memorable memoir (which supposedly originated from a class assignment) entitled Breathing For A Living. She also presented an NPR "radio diary" in 2002 called "My So-Called Lungs" (a play on the teen popular television show "My So Called Life), which featured recordings from two years of her struggle. 

Breathing for a LivingIn her memoir, The Brown University student shares the good times, when she is healthy and able to return to school and her friends, as well as the bad times, when she is hospitalized for weeks struggling with illness. She offers a brutally honest and open look at what life looks like for a young women who is marked for an early death and how one goes about living life to the fullest before it passes you by.  She discusses her loss, guilt and fear at having lived longer than many fellow CF sufferers/friends and points out how time presents additional struggle, rather than relief.

She even falls in love.

Eventually, the disease took its toll and Rothenberg and her family decided to move forward with a double-lung replacement, a surgery which sadly bought her only about a year and a half.  Sadly, the new lungs eventually failed her and she passed away at the age of 22. But she lived as full a life as she could and her writing speaks to what a mature, insightful young woman she was, a fighter to the end.

Living in the Boston area, I used to travel into the Longwood Medical area every day for work. I often sat on the subway system with those who were headed to one of the many hospitals in the area: Brigham and Women's, Boston's Children's, Dana-Farber, Josline Diabetes, among others. I have a distinct memory of sitting near a young woman and her beau (husband, boyfriend) one day and being, I'm embarrassed to say, annoyed at her constant coughing. I recall thinking that I did not want to catch whatever cold or flu she was carrying.

It was only a year to two after that I found and read this memoir. It dawned on me that it is not at all beyond the possibility that that young woman was, in fact, Laura Rothenberg herself (I think I recall her talking about traveling to Boston for medical care). Even if it was not, it is entirely possible that the woman, whoever she was, was a CF patient and not just sick, as I had assumed. A learning moment.

Only partly due to this chance encounter, I enjoyed this read quite a bit. The writing is strong.  The story is moving, while being educational and interesting. Anyone who has an interest in such memoirs would most definitely enjoy this read.

 3/5- Good. Read it, have a good time and move on. Or not.


Jeane said...

Reminds me of a book I read a long time ago, about a child who had CF but it must have been older, the disease was pretty much untreatable. It was written by the father, and the child only lived to be eight or nine years old. I think it was called Alex: the Life of a Child?