Somehow, I never got around to reposting this review of the book, Salty Baby. This review was originally written and posted in December 2013, and reappears here as/is. I remember that this book was recommended to me by one of my Irish readers. Thanks again for that, Enie!
A couple of weeks ago, a visitor to this blog from Ireland alerted me to Orla Tinsley’s 2010 book, Salty Baby. Orla Tinsley was born in March 1987 and has cystic fibrosis, which was discovered three days after her birth. I was interested in her story because I have read several books on CF and because it offered a perspective of how people handle this devastating genetic disease in countries other than the United States. The title of Tinsley’s book, Salty Baby, refers to the unusually high concentration of salt people with CF have in their bodies.
Tinsley’s writing career seems to have started with a stroke of luck. In Ireland, patients in hospitals are often kept in wards. It was not unusual for Orla to be sharing a room with five other people. One time, she happened to be sharing a room with a woman whose daughter was a reporter for the Irish Times. Tinsley ended up writing several articles about CF for the Irish Times, particularly about the sorry state of hospitals for adults with cystic fibrosis.
This book is also a coming of age story. Tinsley writes about what it was like to grow up with CF among healthy Irish kids, some of whom called her “germ girl”. She was interested in music, poetry, writing, and drama and was often involved in theatrical productions, despite being sick with CF. I’ve often heard it said that kids with CF are kind of “special” in that they tend to be remarkably mature and “good”. I definitely got that sense about Orla Tinsely, who bravely seemed to want to wring everything out of living as she could, even as she saw some of her friends dying of the same disease she was born with.
Tinsley had grown up going to a children’s hospital, where her illness was taken very seriously and nurses took pains to help her and other patients avoid cross-contamination. She got her medications on time and the staff was very proactive in the care they delivered. Once she graduated to the adult hospital, she discovered a whole new and terrifying world… where there weren’t enough beds to keep CF patients from mingling with each other. Orla saw people die before their time, mainly owing to the poor conditions in the hospitals.
In a way, cystic fibrosis seems to have given Orla Tinsley a calling. She became an activist in Ireland, working hard to improve the sub-par conditions in hospitals for CF patients. While she doesn’t really explain everything that CF does to the body or even what it did to her body, she does explain that people who have cystic fibrosis must be very careful about not coming into contact with bugs, particularly if they come from another CF patient. She writes of how hygiene standards were not as strict at the hospital for adults. One time, she saw a male nurse preparing a needle with a tray that had blood on it. She spoke up, which annoyed him… and probably spared her a serious setback in her illness.
Tinsley also goes a bit into sexuality with this book. She realizes that she has romantic feelings for women and writes that she might be a lesbian. And she also writes about her flirtation with eating disorders. Although it was always my understanding that it’s very difficult for CF patients to keep weight on, Orla apparently was heavier than many patients are. On a trip to Rome, she ran into an Italian man talking to a couple of ballerinas from Ireland, who were very thin. When the Italian guy realized Orla was also from Ireland, he was surprised because she wasn’t as thin. She didn’t realize that many Italian men apparently like “curvy” women (it’s my experience that they just plain like women).
Orla writes that she had to talk to psychiatrists about her eating “problems”, that she claims she didn’t really have. But then she writes about being very body and image conscious. I would imagine with a disease like CF, it must be especially difficult growing up and dealing with body image issues. Because she has had to have so many IVs in her lifetime, her veins are all pretty much shot. So she’s had to have picc lines and port-a-caths installed in her body and she writes a bit about what that was like, too. Due to her CF, she also has diabetes, and she writes about some of the special issues that have come up because of that. She once got busted in the library for eating a banana and using her cell phone, which apparently results in a 10 euro fine.
I mostly enjoyed reading Orla Tinsley’s book, Salty Baby. She is an engaging writer who has a lot to say and comes across as very personable and intelligent. The one thing I did notice about this book is that it’s a bit long and detailed. There were times when I thought it could have been edited and streamlined a bit to make it a bit less cumbersome to read. But overall, I was mostly just very impressed by Orla Tinsley and all she’s done to make CF care better in Ireland. I would definitely recommend this book to anyone interested in learning about cystic fibrosis, particularly as it’s treated in Ireland.
Here’s an article Orla Tinsley wrote for the Irish Times in June 2013… She also has a blog that hasn’t been updated since 2014.
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