'I would say I've been through a kind of hell on earth'

Painting has provided a new lease of life for a woman who, at the age of 37, suffered a devastating stroke

I had a brain stem stroke in 2004 when I was 37. I actually had the stroke while I was in Limerick Regional Hospital on the way to having surgery for a fracture in my ankle. The doctors still aren’t able to pinpoint the reason why I had the stroke.

I stayed in Limerick Regional Hospital for the first four months after my stroke, waiting for a place in the National Rehabilitation Hospital (NRH) in Dún Laoghaire.

At that stage, I couldn’t do anything. I could barely blink. I was tube-fed and given medication. The television was left on all day in my room which was very frustrating. I had what’s called Locked-In Syndrome for about three years after my stroke. It was total physical devastation.

It was like I was hit by a bolt of lightning and every physical action was out of place. I wasn’t able to scratch my nose but I knew what was going on around me.

When I was in the NRH, the staff helped me communicate with a buzzer, alphabet and colour boards. They also encouraged me to make the most of what I had. They explained to me what my future held.

I was so distraught that my life would continue like this that I was determined to prove them wrong. I have always been a very stubborn person and that didn’t change after my stroke.

My sister, Bairbre, and her husband were a huge support to me, and continue to give me hope that my life will improve.

Coming home

After seven months in the NRH, I was sent back to Limerick Regional Hospital where I stayed for two months before being discharged back home.

Coming home to my husband and two sons – then aged four and nine – was horrible. There wasn’t any rehabilitation available for me. I was still being fed through a tube and had a catheter for the next two years. I spent most of my time in my room or being brought to clinics for different therapies. I had 90 hours’ home support a week.

Everything started to wake up about three years after my stroke. Now, the way I look at it is that my body was asleep for the first three years after the stroke.

I started to eat a soft diet and for the past two years or so, I manage to eat reasonably well.

I am deaf in my left ear and I haven’t got the use of my right hand. My speech has come back reasonably well and I use a wheelchair to get about.

So frustrating

All my injuries were physical and I don’t think my personality has changed. I’m a bit selfish and I’ve a bad temper which I always had. But, it is so frustrating to be in a wheelchair all the time. Every strip of dignity has been stripped away from me over the years. I would say that I’ve been through a kind of hell on earth.

Specialist clinic

In 2007 I got a chance – through a local fundraising effort – to go to a specialist physiotherapy clinic in Germany for 12 weeks. My speech came on very well while I was in Germany. This was a very positive experience for me. There is an excellent health system in Germany.

It’s a disgrace that there is only one specialist rehab centre in Ireland.

While I was at the clinic in Germany, I felt like a woman recovering from a stroke but in Ireland, I’m seen as a profoundly disabled person. people have a bad attitude towards disability here. They speak to people like me like we are imbeciles and they think that the brain is in the wheelchair.

But I continue to make gradual progress even if it is very frustrating at times. I had some acupuncture sessions when I could afford it and this was calming but left me more frustrated afterwards when I couldn’t afford it.

I got respite care a couple of times in a residential centre for older people.

In January, 2012, with the help of my social worker, I moved out of the family home and into a rented house in Templemore, Co Tipperary. My husband and I had really been living separate lives for years. My sons, who are now 16 and 12, continue to live with their father.

Therapy programmes

Recently, I got some physiotherapy sessions funded by the St Vincent de Paul. I have just started a 12-week programme of physiotherapy, occupational therapy and speech therapy with the HSE.

I spend a lot of my time alone but my sister, Bairbre, is the light and soul of my life. Linda, my social worker from Acquired Brain Injury Ireland, has helped me enormously.

I also have 70 hours a week of home support from the Tipperary Centre for Independent Living.

I love music but in the past few years I have started to paint. I first began to paint when I was back in the NRH for a few weeks in 2007.

Now, painting is my passion. When I held a paintbrush in my hand for the first time, I felt wonderful. I’d love to paint all the time but art materials are expensive.

A full life

Recently, some of my paintings were shown in a group show at the Source Arts Centre in Co Tipperary.

Painting is my life now and art gives me another voice. I know that I will make a living out of painting because it is so honest.

The economic climate will have to change before I can sell my work but I do plan to have a very full life.

Painting is something I can do for myself. It gives me a sense of self worth and allows other people to show me some respect and value me as a worthwhile person.

Acquired brain injury Support

To offer support or find out more about acquired brain injury, contact Karen O'Boyle on tel: 01-2804164 or koboyle@abiireland.ie . See also abiireland.ie