Editorial Director, Donna Coonan, shares her thoughts on Helen Stevenson’s poignant memoir, and the reasons that she and Poppy Stimpson, Helen’s publicist, are running a half marathon in aid of the Cystic Fibrosis Trust.
It was with a kiss that the author discovered that her baby, Clara, had cystic fibrosis; her daughter’s skin tasted salty, an indicator of the incurable genetic condition.
I didn’t know much about cystic fibrosis before I read Love Like Salt. I didn’t know that the current life expectancy is not much over 40 years old. I didn’t know that to lead something approaching a ‘normal’ life, a person afflicted with CF has to exercise every single day. With diminished lung capacity, that must take willpower, resilience – and, I imagine, a degree of frustration: while another child might spend the same amount of time training to run at a high level – perhaps for their county – a CF sufferer must do it just to stay on top of their condition.
Nobody can fail to be unaffected by Helen Stevenson’s writing, and the worries and fears that are part and parcel of life when you become a mother are intensified in her particularly painful circumstances. But in Love Like Salt, you meet a family who are determined not to live under the shadow of illness. They live life on their own terms, living fully, creating joy and following its lead.
Clara is now fourteen and is on a drugs trial for a protein corrector. Her life has been transformed by developments in precision medicines. She is a budding artist, a musician, and, most surprisingly of all, given her condition, a talented runner.
When Poppy heard that Clara had just completed her first 5k run, she was inspired to enter a half marathon in support of the Cystic Fibrosis Trust, and I decided to join her. When our training seems tough, we think of Clara. There are a range of problems that people living with CF experience, but one of them is breathlessness, and when Poppy and I are out of puff, it’s sobering to consider that if we were to cover our noses and breathe only through a narrow straw, we’d have some idea of how it would feel to exercise with such reduced lung capacity. And yet it’s something that many people with CF have to do every day.
There are breakthroughs happening in cystic fibrosis treatments, and trials taking place to see if it is possible to introduce a normal version of the gene into the body. They are on the cusp of something.
Thank you so much,
Donna Coonan and Poppy Stimpson