Brain trauma left us all fighting for our lives but we are now on the road to recovery
Every year in Northern Ireland hundreds of people suffer trauma to the brain as a result of accidents, strokes, illnesses and attacks. Thankfully many of them survive but must learn basic skills all over again. Three people tell Karen Ireland how the charity, Brain Injury Matters, has helped them with rehabilitation.
Elizabeth: 'I know I am lucky to still be here'
Elizabeth Erskin (55) lives in Belfast with husband Jim (56) and they have one son, James (35). She says:
Six years ago, I was in my mother's house when my mum and my sister found me lying across the sofa. At the start they thought I was messing about but then they realised that something had happened and they called the ambulance.
I was rushed to the Royal Victoria Hospital in Belfast where it was revealed that I'd had a cardiac arrest.
It had left the brain starved of oxygen, so my brain was damaged as well.
It all felt very ironic - previously I'd worked in that hospital as part of a team that cleaned all the sterile equipment, now here I was as a patient.
From the outset, it was clear that this attack was going to change my life forever.
My husband Jim works as a steel erector and at the time I fell ill he had just gone back to work part-time as he was recovering from a tumour. Looking back on that dreadful period, Jim tells me now that it was a very frightening time but, to be honest, I can't remember very much about being in hospital at all.
I was later moved to Musgrave Park hospital. In total I was in hospital for nine months and that must have been really difficult for my family - they were coming to visit me and seeing how I had changed into a completely different and very helpless person. I couldn't walk or talk or do simple tasks like feed myself.
I had to learn how to do everything again though I don't remember being taught how to do these things as the attack has affected my memory.
Strangely, I can remember things that happened years ago but not events that happened recently.
The hardest thing for me is the loss of independence. I have carers who come to the house and get me up and dressed in the mornings, and someone who comes at the weekend to shower me.
I hate that I can't do these things for myself but I know that I am lucky to still be here. Realistically, the outcome could have been so much worse.
I do still get out of the house on occasions, but Jim or our son James has to be with me and I get tired very quickly.
It's the everyday things that I really miss, such as being able to do my one-time favourite hobbies, crochet and knitting.
But I just have to try and accept that life is very different now and it has to be lived at a much slower pace.
One of the hardest repercussions from my illness was that we had to move house - I wasn't allowed to return to our previous home as it had steps at the front and at the back and there would be no way that I could manage those.
We talked about what we should do, as a family, and decided we should move into my mum's house across the road, as it would be easier for me to manage. She had just passed away before I got out of hospital, and living there meant we'd still have the same neighbours and it wouldn't be such a change.
My one highlight of the week is going to Brain Injury Matters. I love getting out and meeting people who have been through similar things to myself. I can talk to them and there is a real sense of belonging. It is really good fun - we get to do different activities and they take us on outings to the shopping centre.
I do puzzles and sit and talk to the other people there. It is like a big family and we all know how each other feels.
I've also come to realise that there are some people who are a lot worse off than me - that knowledge makes me grateful that I am still here and can manage to do the things that I can do."
Rene: ‘I really miss doing all those things which a grandmother takes for granted’
Rene Boyd (55) lives in Belfast with husband John (51), who is her full-time carer. They have two children Jamie (31) and James (28). She says:
I used to work with dementia patients and I loved my job, but my life changed a few years ago when I suffered a stroke. I had a pain in the top of my head and I remember shouting out to John. It was so bad he rushed me to the doctor. They immediately realised that I was an emergency case and needed to go straight to hospital.
John took me to the Ulster Hospital at Dundonald and from there I was rushed to the Royal Victoria Hospital.
While there, I had a stroke as the doctors were seeing to me. I completely lost my vision and was scared out of my mind.
I had been an active grandmother who worked and looked after her grandchildren. I enjoyed being very independent.
Yet here I was in hospital and I couldn’t see a thing, while my whole side was weak.
After a few weeks I ended up being moved to Musgrave Park Hospital, where I stayed for months while undergoing extensive rehabilitation.
I had to learn to walk and talk again.
I had a group of friends in the hospital and we tried to keep each other’s spirits up and support each other. We were called the ‘Rakers’ — I used to hold on to one of their wheelchairs, so I could be directed where we were going.
I made a lot of good friends in hospital, but being honest, I don’t remember much about that time.
I also had an operation which restored a small bit of my sight, but I can only see very little. And I had a lot of physiotherapy on my legs to make them stronger and help me walk.
John tells me that he was there every single day, but the truth is that while I know that he must have been, I simply can’t recall details such as those.
My stroke has been very tough on me, but the whole experience has certainly taken its toll on John and has been very difficult for him to come to terms with.
Prior to falling ill, I took care of everything in the household, such as paying all the bills. Now, he has to do all that, as well as look after me.
John lost a lot of weight with all the stress of me being ill. I know it has been difficult for him to watch me struggle.
We just have to try and make the best of it.
One of the hardest aspects of it all was that my granddaughter was just a few months old when I had the stroke and so I never really got to see her.
I really miss doing all the things a grandmother takes for granted — I used to look after the children and play with them and take them out, and now I am not able to do any of those things.
Not being able to drive has been another blow, as I used to love getting out and about.
The stroke left me with a brain injury, so I go to Brain Injury Matters once a week and I really look forward to it.
We do art and writing and, as I can’t see properly, I know there will always be someone there to help me.
The social aspect helps — it’s great to get out and about and meet other people.
I know I am lucky, as it could have been a lot worse.
Oh, and John says I never stop talking, so I suppose I’m not that bad really.”
Hugh: ‘At first I cut myself off from a lot of friends, but now I’ve had to get out and about and make new ones’
Hugh McNally (40) lives on his own in Belfast. He has six children with two previous partners. He says:
While I was out watching a football match in a bar four years ago, a group came in and started smashing the place up. That is the last thing I remember and then I woke up in hospital. I had been hit over the head in the attack and my brain was left swollen.
After a month, I was moved to Musgrave Park Hospital. My parents have both passed away, so my ex-partner, brother and sister and friends came to visit me. I don’t remember much about being in hospital, though.
Before this happened to me, I was a caretaker in a school, but I had to re-learn how to do everything.
What I find toughest is not being able to play properly with my children.
I have been left with a bad limp, so I can’t go out and run about with them and play football. I started going to Brain Injury Matters and found that it helped my confidence. I do art and drama there. I go one day a week and I also volunteer for them on a Wednesday and help out any way they need it. It gets me out of the house and it is good to meet other people and hear their stories. You realise you are not the only person coping with this kind of injury.
The charity has been so good to me that I want to give something back to them. One of the hardest things about having a brain injury is that initially I cut myself off from a lot of my friends as I didn’t want them to see me, but now I’ve had to get out and about and make new friends. Brain Injury Matters helped a lot with that.
My short-term memory has been affected and I can’t remember dates or appointments that I am meant to go to. I have to keep reminders about everything on my phone.
Learning to walk and talk again was difficult and my speech was slurred, so people couldn’t understand what I was saying. I do try to be as active as possible and make the most of the life I have been given. I also spend as much time with my children as possible and they make it all worthwhile.”
Charity provides helping hand to people in need
Brain Injury Matters is a charity dedicated to supporting people affected by brain injury. The aim is to help them rebuild their lives and gain independence.
All services, which are delivered by professional clinicians and staff with specialist knowledge, include:
- Wellbeing programme. A specialist, community-based support including neuro-physiotherapy, exercise programmes, art, drama workshops and other activities
- Younger Person's Network. Combines emotional and practical support for young people with a brain injury
- A counselling service
- A training service . Information on all aspects of brain injury for professionals
- The Family First Project. A specialist support service for families to support children who have sustained a brain injury
For further information, go to www.braininjurymatters.org.uk or tel: 028 9070 5125