Featured in Spokeout Winter 2011
Written by Kiara Lynch
Thu, 23 Aug 2012
Book Review - 'Salty Baby'

Book Review - 'Salty Baby'

Orla Tinsley is well known as a campaigner for the rights of people with Cystic Fibrosis in Ireland. KIARA LYNCH reviews her recently published memoir, Salty Baby.

Ireland has the highest rate of Cystic Fibrosis (CF) in the world, affecting 1,200 people. It affects the lungs and digestive system in particular, leaving sufferers at the mercy of infection and in need of frequent hospitalisation. Hence the concern of having CF patients share wards with other very ill patients in St Vincent’s Hospital. In 2005 Orla Tinsley wrote her first article for The Irish Times highlighting the conditions of her care at St Vincent’s Hospital which were leading to CF patients dying 10 years earlier than their counterparts living across the border. Orla went on to write more articles, take part in TV and radio discussions, make a documentary, and mostrecently write this memoir - all of which have done a huge amount to progress the campaign for the rights of peoplewith CF in Ireland.

Orla Tinsley’s autobiography Salty Baby is the moving true story of her fight to live, love and laugh. Its title stems from the fact that one of the first signs of CF is an excessively salty taste to the skin. In the book she brings the reader into her everyday life of physio, medication and her constant struggle to live her life. Orla’s story is deliberately not about an ‘inspirational sick girl’; rather it’s about Orla’s journey from childhood to becoming a young woman, who happens to have CF. She had to learn to speak up for herself from childhood and demand a decent level of healthcare, unwittingly becoming an inspiring campaigner in the process.

Orla brings us through her childhood, much of which she spent in the nurturing environment of Temple Street Children’s Hospital. She recalls fond memories of family, friends and school, but what really struck me was how she dealt with her CF. Her family clearly instilled a mind-overmatter philosophy in her from an early age, which comes through in Orla’s personality throughout the book. If you can’t do something one way, keep trying until you find another.

During her teenage years, Orla gives us heartfelt descriptions of time spent in a “dark place”. Although the support of her loving family and friends helped her through it, she also describes how writing down her innermost feelings in her journal was, at times, her only solace. When Orla turned 18 the sudden transition from the familiar, child-friendly environment of Temple Street Children’s Hospital to the adult orientated world at St Vincent’s Hospital was daunting and traumatic to say the least. I was left speechless upon reading some of her treatment at St Vincent’s. Orla doesn’t just help you understand the poor treatment of CF patients, she makes you feel outraged that this is still happening in the 21st century.

Some of the hardest parts of the book are the sudden deaths Orla has had to cope with. While she still misses friends who have passed away, Orla says their memories help her continue campaigning. “Sometimes I’m just exhausted, physically and emotionally, but I’m not just fighting for me I’m fighting for my friend’s voices to be heard as well.”

A new isolation unit is due to open next year at St Vincents Hospital. This will finally allow CF patients to receive treatment without the constant risk of picking up infection from fellow patients. Orla feels this is a big step towards a better future, and she feels hopeful. “I feel lucky, I’m happy to be alive, I appreciate each day and I feel positive about the future.”