Health experience: ‘I knew for years that kidney failure was coming’

When I was born, they baptised me straight away. They didn’t expect me to live. They gave me three months max. Then they thought I wouldn’t make it past my teenage years. I’m 51 now.

I had spina bifida and because I spent years in hospital as a child, I was late starting school. I had no interest in it, though. I went as far as second year and said, “That’s that”.

A few years later a place came up to go to college in Dublin. It was the best thing that ever happened me; it got me out and made me independent.

I did a secretarial course and part of it was work experience. I worked in a company for months and I loved it. When they advertised the job full time, I applied but an able-bodied person got it. That was life then, though and, please God, it’s getting better out there now for people with disabilities.

I lived in Dublin for three and half years. One Christmas I met Brendan, who is also from Athy. Four months later we were engaged, I moved home and we married in 1986.

I always wanted kids, always. After I lost my first child I was very nervous because I thought, is this going to be it now? I’d been told that I couldn’t carry a child. Every doctor said, “No, no, no.”

But was it no because my body wasn’t meant for it, or no because I have a disability? There was always a question mark.

I had a very good GP and he helped me with my second pregnancy. In my first pregnancy I had tried to walk but, because my body is so tiny, it couldn’t handle it.

For a lot of people with spina bifida, your body parts are not in the right place. So my right kidney was tiny and it was down nearly at my hip. My left kidney was normal size and my womb was very high, so I wasn’t structured to have a child.

When I became pregnant with Brendan Junior I went into the wheelchair from three months on. He was premature, but was born a very healthy baby.

I went into the wheelchair full time about 20 years ago when Brendan Junior was seven or eight years old. We’d go into a shoe shop and they’d ask him what I wanted. I was in a restaurant one day with a friend and they asked her what I wanted to eat. My friend said, “She can speak for herself,” and then they’d almost shout at you as if you were deaf.

It is frustrating, but if I can I’ll try and find a way around it because I have to think about who is coming up behind me. There are younger people fighting this same battle and if I give a bad attitude, what hope have they? I try to use myself as an example and remain calm.

I knew for years that kidney failure was coming but it was the one I was most afraid of. I was told I would never last long on dialysis, that I wouldn’t be strong enough to live. But, again, I contradicted them. I’ve lived on it now for 13 years. I’ve being doing dialysis at home since 2010 and it’s absolutely magic. It’s great to be out of the hospital.

Brendan is my full-time carer. He is absolutely brilliant. He’s my right hand, my left hand: without him I wouldn’t be much. We learned how to prep the dialysis together. He dresses the machine and then I see to the surgical part of it. The preparation alone takes two hours and then I’m out for five hours after that.

I’m on a very strict diet. You have all these food restrictions because toxins can build up and they have to be removed. If not, you’d have too much in you and you would have a massive heart attack.

I’ve had to cut out all the nice things: chips, chocolate, Taytos. Even vegetables are bad because of the potassium, which is very dangerous. Each day I’m allowed two small potatoes and they have to be peeled, chopped and boiled twice on their own in a saucepan to get the potassium out. I’m only allowed half a tomato. If I ate a banana it could kill me.

I've always been into sports. As a teenager I was involved with the Irish Wheelchair Association and played basketball and threw the javelin. In 1999 I set up Club 2000, a sport clubs for people with spina bifida and hydrocephalus. It's mostly our own community but we have people with other disabilities who come along too.

I said from day one that I wanted it to be family orientated, so we have mammies, daddies and grannies getting into the wheelchair and they come out wondering how their child is able to do that. We have a lot of helpers but I don’t have any qualifications so I only coach what I know and then I make up other games that can help with things such as hand and eye co-ordination.

I’m on dialysis four days a week so it leaves me with just three days to work in my greenhouse, run Club 2000, help out with the Kildare Spina Bifida and Hydrocephalus Association and look after the house. I’m kept busy all the time, which is how I like it.

In conversation with Nora-Íde McAuliffe