I’VE SPENT MOST of my life trying to keep myself out of a wheelchair, even though since birth that’s all anyone wanted to do with me. They told my mother it was my destiny, that I would most likely be brain damaged and would never walk – but now, at 28 years old, I’m walking around and living life to the max.
My parents were a little younger than I am now when I was born in Cahercalla Hospital in Ennis, on 30 July, 1986 and they knew nothing of the condition I was born with, Spina Bifida.
The news filled them with shock and devastation and although my mother knew that I was in another room being cared for by the doctors she felt in that moment as if I had died.
When she did eventually get to meet me she noticed nothing unusual about me, I looked like every other newborn I just had tubes poking in and out of me in the incubator. The prognosis wasn’t good however and even though I looked “normal” my spine was split and needed to be closed. As a result of my condition she was told I would most likely suffer nerve damage and would never walk.
Even though I was diagnosed with a lifelong condition, one that comes with other complications such as scoliosis, the curvature of the spine, and hydrocephalus, a build up of fluid in the brain, neither my parents nor I have let Spina Bifida define me as a person.
I was treated like every other child in the Mungovan household and even though there were certain things I could not do I was always encouraged to learn what my capabilities were for myself. Having been given a diagnosis that I would never walk it came as a huge surprise when, at three years old, I pulled myself up to my unsteady feet and waddled across my sitting room floor.
It was the beginning of something for me and my family. It gave them hope and taught us that anything was possible with the right attitude and determination.
Growing up with Spina Bifida and scoliosis was not easy, in spite of my positive outlook on life. I was always conscious that I looked different and one day when a child at school called me a hunchback it had a crippling effect. I longed to be perfect. I signed up for every experimental surgery in the hope it would turn me into the supermodel I wanted to be. It took me time to adjust to the fact that this was unattainable. It wasn’t until I reached my late teens that I came to terms with it, this occurred when I was dealt another devastating blow.
At 19 I was diagnosed with kidney failure. It came as a huge shock and changed my whole outlook on life. I had to learn how to manage my diet in order for my kidneys to continue functioning, and I realised how short life really could be.
I began to think differently and became focused on the now, how life was for living and I realised for the first time that I wasn’t going to be here for a long time, but while I was here I was going to enjoy myself. This was reaffirmed when I suffered another setback in my 20s having succumbed to a massive infection brought on by hydrocephalus.
It was after this last stint in hospital that I began my journey to catalogue my life with Spina Bifida. I can look back now on my last 28 years and know I have lived every day in the moment. I’ve laughed, I’ve cried and I’ve loved. I’ve got up to mischief like every other teenager, I’ve mitched off school, and I’ve done the bush drinking thing. I’ve had boyfriends and I’ve travelled. Growing up I didn’t know any of this was possible, in fact, all I was sure of was the great many impossibilities my life would entail.
It was for this reason that I got together with my co-author Carol Byrne and senior editor Niall McElwee of Book Hub Publishing to put my life ‘out there’ and to show that a (somewhat!) normal life is possible with Spina Bifida. I also wanted to get across to society, in general, that appearances can be deceiving and what someone may think you are capable of and what you are actually capable of can be very different.
My Journey with Spina Bifida: Me and My Backbone, by Siobhan Mungovan with Carol Byrne, is available to order online from www.bookhub4u.ie and from selected independent bookstores See publisher’s website for details.
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