“Little Sarah gets her chest PT and keeps giggling.  She didn’t cough once. One day, when she’s older and sicker, she won’t be able to laugh without going into a coughing fit. I hope that one day I will soon be able to laugh like her.” – Laura Rothenberg

Laura Rothenberg wrote, and wrote a lot.  Her voice lifts from the page. It seems her friends and family gathered their letters and emails and Laura’s journal entries posthumously to create her memoir.

I read this book years ago. She is a New England local. She received care in Boston, lived at time in New York and went to Brown.  The reader feels how brave she is. Exquisite happiness; then at times, anger, sadness, and utter despair. Some sort of betrayal passes through as well.

She passed at 22, after lung transplant rejection.

I hear, read, and see, through the community of all sorts unbelievable stories. It settles in my brain somewhere.

I think cystic fibrosis is an absolutely horrible disease.  I believe it should be eradicated. I don’t think any child should ever be born with this disease.

I think my CF social worker is waiting for me to crack. She stares me and then I stare at her. She asks how I am doing.  I say, “Good.” I am alive and I am still here. I stick to the facts. As she wrote in my notes, “Tessa speaks matter-of-fact.” She thinks is just the way I talk, not that I am trying to put on a front is what I got from it. I don’t talk about CF to my CF social worker because honestly what is there to say? It is stupid. I have a million and half things, expectations that I have to do at home and honestly I have to meet them – “Oh Well.”

A person has to work their butt off and will have to keep on working their butt off and more so as they get older, “Suck it up.” The resistance to give up becomes stronger and then a person must become that much more determined and meet that resistance.

Just have to “Get on with it.”

You know what is so funny, Gayle Waters Waters. That is how you get on with it. 

Work cited:

-Fleming, Chris. Gayle Waters Waters: One Trip. Youtube. April 8, 2012. https://www.youtube.com/watch?v=PQ-tNjAG4sE.

-Rothenberg, Laura. Breathing for a Living. New York: Hyperion, 2003.