WHEN she was born, Siobhán Mungovan’s parents were told she would never walk, that she was brain-damaged and would never amount to anything.
Twenty eight years later, Siobhán has a responsible job in the planning section of Clare County Council, lives an independent life in her Ennis bungalow and has just launched a book: My Journey with Spina Bifida, Me and My Backbone which is getting national media attention.
And the book’s co-author is Limerick-born journalist Carol Bryne, from Ardnacrusha, who worked with the Limerick Leader before joining The Clare Champion.
“Growing up, as a teenager or as a young woman, is difficult for anybody but for someone with any disability, it makes it more so,” Siobhán said in an interview with the Limerick Leader this week. “I wanted to share my experience.I wanted people to see how I coped, to educate them that even though we do have a disability we do live normal lives, somewhat different, but normal.”
And her hope is that it might also help others who have a disability.
“Not everything in my life is rosy,” she is quick to emphasise. “I have had kidney failure. My lungs are failing.” “But disability is not your attitude. I have chosen to adopt a positive attitude. It is something I have had to develop.”
Written with Carol Byrne, the book does exactly what it says on the tine, chronicling Siobhán’s life journey. Along the way, it deals with the issues she had to confront, both social and medical. Diagnosed with spina bifida, Siobhan also has scoliosis or curvature of the spine and as a child was called a hunchback by a fellow pupil.
“I was fit to kill him” she says feistily of her reaction. But despite that, the name-calling still bit deep and she had to learn to cope with that and stand up for herself. Later, she was refused entry to a number of secondary schools and that hurt too. “I have a particular disability. There is nothing wrong with my brain,” she says.
But still today, she gets annoyed at how people with disabilities are perceived and categorised based on appearances or first impressions. Some elements of writing the book proved harder than others. “I am very comfortable talking about medical terms,” she admits. Having to oopen up and talk about how her desires and feelings as a young woman proved more difficult. But, she adds: “It had to go in.”
Moving into her own home four years ago was liberating for her. And music, in particular, joining the Ennis Gospel Choir has opened many doors to friendship. But she says: “Mr Right hasn’t show up yet.”
A key strand in the book, according to her co-author Carol Byrne, is the very strong bond Siobhan has with her mother Geraldine, who is, in many ways the back-bone of the book’s title.
What is clear too is Carol’s admiration for Siobhan and how she dealt with the different traumas in her life, including near death in 2011. “She has been through some harrowing experiences.,” she says. “But she tells it from a witty perspective. Even in hospital, she and her mother try to find fun in things, to lift the mood.”Siobhan, she adds, is a very bubbly, positive type of person. “She really is always laughing and smiling. That is one of her catchphrases. Keep smiling always.” My Journey with Spina Bifida: Me and My Backbone is published by Book Hub Publishers at €12.99.