THE day Siobhan Mungovan started walking was the day her father, Noel almost keeled over. Aged three and diagnosed with Spina Bifida, walking wasn’t on the list of what was expected of the now 28-year-old Connolly girl, who, these days, works in the planning department of Clare County Council.
Siobhan, who along with Clare Champion journalist, Carol Byrne, has written Me and My Backbone, My Journey with Spina Bifida detailing her life with Spina Bifida, clearly recalls the circumstances surrounding her first, albeit unsteady, steps.
“Dad roared out to Mam, ‘where are my fags, Ger?’ Mam didn’t take a blind bit of notice because he’s always roaring for something. Lo and behold, out of nowhere, Siobhan gets up with a wobble and takes herself across the floor to get the fags,” Siobhan recalled, ahead of the book launch on November 7.
“He was shocked, obviously, that I walked but he was more shocked that I knew what fags were,” she laughed.
Cigarette choice appears to have played a key role when a name had to be put on a pet dog in the Mungovan house.
“Dad smoked Major at the time so we called our dog Major. Any dog we’ve ever had, we’ve called them after fags. We had another dog, whom we called Benson. Major was the laziest dog on the planet. If anyone came into the driveway, he’d be like ‘ah yeah, grand. How’re you?’ He was a brutal guard dog but, to me, he was like a walking aid. A dog is not going to keep you up. If you’re going to fall, you’re going to fall but, to me, he gave me that confidence. Myself and Major had a special bond,” she said of the now late Golden Labrador. He might have been lazy but Major was blessed with patience. Maybe he was too lazy to get riled up.
“Each day I’d walk up along the driveway and I’d grab the dog’s neck, thinking it was like a walking stick. This was something we did on a daily basis. To me, Major was like a trained dog. He wouldn’t hurt a fly. For somebody of my stature, if a dog came running at me, he’d flatten me. I’d be there looking up at him. I’m not a lover of dogs but there was a bond between myself and Major,” Siobhan said.
Unfortunately, Major had to be eventually put down.
“It was very tough on us. He was about 12 or 13 when we put him down. He died of complications of the kidneys, which is kind of ironic because I have the same thing,” she pointed out.
Before leaving the cigarette tales behind, Siobhan reddened up somewhat when recounting the bizarre circumstances in which her father found out that his 15-year-old daughter smoked.
“Smoking is out of the question now but I did smoke growing up. I can’t lie. The first time I started smoking, I got caught in a huge way. I was above in my bedroom, smoking out the window. I was smoking one of my dad’s Majors. I flicked the fag butt out the window. Where did I flick it? On top of Noel Mungovan, my dad’s, head. He came up to me and he said, ‘what’s this, Siobhan?’
I said, ‘It’s a fag butt. You probably found it on the ground outside.’ He said ‘I found it on top of my head’.”
Not noted for lapsing into silence for long, there wasn’t a word out of Siobhan for a while after that.
Now living in Ennis, Siobhan has dedicated her book, which is published by Book Hub Publishing, to her parents.
“They definitely are my backbone. Coming from a rural area, Spina Bifida was an unknown thing 28 years ago. We’ve been through a hell of a journey. There have been ups and downs. The book is about beating the odds because when I did start walking, I wasn’t supposed to walk. Spina Bifida means split spine. That comes with certain nerve damage and the nerve damage I was supposed to have is not to have any feeling from the waist down,” she explained.
Lung and kidney issues are also a concern. “My downfall would be my lungs. Someone else, their kidneys might give up and that’s why, when I got diagnosed with kidney failure (aged 19), it hit me like a tonne of bricks. Kidney failure is so deceiving because you feel fine. Next thing, the doctor tells you ‘your kidneys are not doing great, Siobhan.’ I said to myself that I either sit at home, feeling sorry for myself or I go out and enjoy what I have. I don’t think, every day, I’m going to wake up and kick the bucket. If I thought about that every day, I’d drive myself mad. I wouldn’t go any place,” she said.
About four-foot high, Siobhan attributes her decision to attend Ennis Community School as a decisive moment. Along with her brothers, Shane and Conor, she received her primary education at Connolly National School.
“It’s not that everybody was weird at secondary school but everybody had a story. I didn’t stick out like a sore thumb. It was definitely the becoming of me. Everybody was unusual. I blended in, for once. There are other times you’d definitely pick me from a crowd but our year was quite small so it wasn’t that daunting. It was like a little family. Everybody knew everybody,” Siobhan recalled.
“They either liked me or they didn’t because of my personality and not because of anything else. Towards the end, I came into myself and became my own person. At secondary school, Mr Matt Power and Mr Concannon were legends in my eyes. I definitely wouldn’t have got through the five years without them,” she believes.
As part of a PLC course at Ennis Community College, Siobhan did work experience with Clare County Council. On completing the course, she was offered more work experience, which eventually led to a job and, eight and a half years later, she is still working in the planning department.
When not at work, Siobhan is a member of Ennis Gospel Choir and is keeping an eye out for a man.
“It’s a difficult subject but I want to meet Mr Right. If he wants to come knocking on my door any time soon, he’d be more than welcome. I can’t say I’d turn him away,” she laughed again.
Siobhan does have certain criteria, though.
“I don’t like a guy who is out to mind you. I’m able to mind myself and I have a mother. She’s doing a great job and I don’t need another one. It was difficult in secondary school. Since then and maybe now, I’m still very guarded. I’m not good at trusting guys. I don’t know what’s wrong with me,” she reflected.
Neither can she understand why Irish men take so long to make a move. “This is very bad to say but guys only come over if they’re locked. You’re saying, ‘what was wrong with you two hours ago?’ The beer goggles are on and you’re Pamela Anderson all of a sudden. Disability or no disability, it’s the most annoying thing that can happen to a girl.”
Siobhan looks a good bit younger than 28, which even leads to work colleagues thinking she has yet to hit 20. “The other day, someone at work said ‘you look 18.’ I said, ‘I’m here since I was 10 so.’ I thought it was so funny. I was like ‘you brought me up, did you?”
Her life coach, Jack O’Sullivan, was the first person to suggest that Siobhan write a book. “It’s to show people that, whatever condition you may have, there’s always a bright side to everything. If you are in a dark place, there are services out there. But it’s up to yourself and if you don’t want to do it, nobody is going to come to you,” she has found.
Although Siobhan has had more than 20 operations, she is neither resentful or bitter. “I can’t say I hate my disability although I dislike my disability. I wouldn’t have met the people I’ve met, I wouldn’t have had the opportunities I’ve had and I certainly wouldn’t have the bond of my family because I probably wouldn’t be living in Ireland. I live for today. I don’t know what tomorrow is going to bring.”
Talking to Siobhan, one would never guess that she has been hit with bouts of depression.
“You may think that I’ve been this person all my life. I definitely wasn’t. I’ve been in some seriously dark places. I’ve fought for the positivity that I have now and I just want to hold on to it for as long as I can,” she said.
A particular phrase irritates Siobhan to this day, as does the odd instance of people talking about but not to her.
“It’s a typically Irish saying that people have, ‘you poor creature.’ It drives me demented. Those words have haunted me my whole life, although I probably say it, unknownst to myself, too. Also, if I’m speaking to you and my mother is over here, you’re often talking to my mother about me. You’re talking about me but not to me. I find that an awful lot. Even though I do have Spina Bifida, there’s so much more to me. It hasn’t defined me,” Siobhan insists.
My Journey with Spina Bifida, Me and My Backbone by Siobhan Mungovan and Carol Byrne, published by Book Hub Publishing, will be launched on Friday, November 7 at Clare County Council in Ennis.
By Peter O’Connell