Review: Autobiography: Salty Baby by Orla Tinsley
Orla Tinsley could easily have written a careful memoir hiding behind her public profile as a campaigner for better hospital facilities for cystic fibrosis sufferers.
It would win respectful praise and polite reviews for the 24-year-old Kildare woman whose newspaper articles and other media appearances in recent years have graphically revealed the poor hospital conditions for adults with the disease.
Instead, Orla bears her soul and opts for searing honesty to give a lively and truthful insight into the role this arch enemy of an illness has had in shaping her life.
But its strength is that it goes beyond the hospital ward, the drips, the antibiotics and the coughing up of blood.
She unveils the inner struggle behind the polished performer. She has a great talent for articulating her remarkable self-knowledge and self-doubt.
Her own searching mind and spirit, coupled with her love of poetry, drama and the influence of her parents, means her approach to life is the exact opposite of a passive victim of an incurable disease.
Orla was born at just 31 weeks. But having survived the dangers of prematurity she was diagnosed with cystic fibrosis within weeks.
Ireland has the highest rate of cystic fibrosis in the world, affecting 1,200 people. It affects the lungs and digestive system in particular, leaving sufferers at the mercy of infection and frequent hospitalisation.
Hence the concern at them having to share wards with other very ill patients in St Vincent's Hospital.
As children and teenagers, the hospitalised cystic fibrosis patients strike up intense friendships.
Some of the hardest parts of the book are the sudden deaths Orla has to cope with.
She had known Martha for just five weeks in St Vincent's Hospital. "She died in the madness of that room, that bloody ward," recalled Orla.
They had talked about their ambitions and the hidden taboo -- how hospital life can "suck you in and make you lose motivation to leave".
The transition at 18 years from the nurturing Temple Street Children's Hospital to St Vincent's Hospital was traumatic. She found herself in a shared ward with an elderly lady moaning and yelling nearby.
"It felt like some sort of surreal punishment."
As a child she felt her illness made her lacking in compassion for others because "I could not make excuses for myself.
"My life was full of rules and lessons and sacrificing things ... I felt like I was always behind ... "
Orla went on to study at UCD but her main ambition has always been to be a writer.
She has had relationships with boys but admits she is bisexual. In recent years she had built exercise into her regime but the disease can deliver a cruel setback when she feels her most free.
In reality, she is an accidental campaigner who would love to be another anonymous student.
The campaigning can be "brutal" and it has meant she has not finished her degree. On the one hand, she is seen as inspirational, but she felt others resented her profile and this "besieged the fragile part of me".
She is now determined to experience life fully.
"The idea of death is too final for me."
Her passions are creativity, expression and inspiration. She does justice to all three in her book.
Eilish O'Regan is Health Correspondent of the Irish Independent