This book was something of a surprise. When I agreed to review it I expected it to be quite a boring read and what I actually got was something of a moving experience.
As with many books of multiple contributors, the occasional chapter is boring. For instance, I found the parts on the re-structuring of Service Development and Fundraising rather tedious. However, I’m sure that segment would be of much greater interest to Americans, as the book is very much based on American activities.
I was fascinated by the section on Developing Science. Paul Quinton describes the moment when his university studies led him to correctly self- diagnose his CF and the death sentence that it implied as “sufferers do not survive beyond 6-7 years of age”. The diagnosis led to an interest in the disease and his eventual identification of the chloride ion transport fault. It’s obviously been a rewarding battle for him though and he entertainingly describes the ‘Eureka’ moment of scientific discovery as “…may even be better than sex.” (page 51).
I was heartened to hear Dr Charles Lobeck from the Madison Centre speak from his own experience when describing the long defunct ‘Mist Tent’ as a torture (he tried it himself for several hours). If only all junior doctors tried all our therapies! It might not reduce the need for arterial blood samples, broncoscopies and ‘drain cleaners’, but at least they’ll stop looking at us condescendingly when we complain about them.
Overall I found the book an extremely emotional experience. I was moved by the dedicated efforts of all the people involved in the fight against CF. Having CF myself I naturally identified with the hundreds of patients that were mentioned between the covers. I cried after reading about the babies that died in the sweat bags used in the early days of the sweat test. I cheered every time a child was quoted as being alive; decades after their parents were told they wouldn’t make it out of infancy. I rejoiced every time a doctor saw a logistical problem in treating his patients and set about solving it. I dread to think what treatment would have been like today if it hadn’t been for these people.
I felt a profound gratitude for every person that has died from CF. Every single one of them has helped to move the battle forward, inch by inch. There are the pioneers who could be mentioned by name, but also the thousands that have inspired care staff, doctors, scientists and ordinary people to make things just a little bit better for people with CF.
Like many people with CF I find being referred to as ‘brave’ annoying and patronizing. Bravery is really about choice and I don’t have a choice where fighting CF is concerned. I think the people that are really brave are those that see the suffering that cystic fibrosis can cause, and choose to do something about it (putting in long and often thankless hours), rather than work in a field free from emotional distress.
This book has left me with a lasting image of pharmacist Sam Trott who escaped riots with an employee carrying medications for local children with CF. He didn’t have to do that. Many would have been too pre-occupied with the threat to their business.
So to conclude I would like to extend my personal thanks to Sam, and everyone who has contributed to the book, and the battle against CF. Without them I wouldn’t be alive today, let alone be a healthy 36 year old.
Reviewed by Teresa Jacklin
Editor’s Note: To purchase this book or to print up an order form visit www.ronaldhousecle.org (click on Family Resource Center)
OR ring Dawn Conover: +1 216 229 5757
ISBN: 0-9717064-0-9
