‘I’d fall. They’d laugh. I didn’t know what a brain injury was’

Falls, assaults, car crashes, heart attacks, strokes, suicide attempts: there are many ways in which people can acquire a brain injury.

"Sufferers may have more intense or less intense feelings than before," says Dr Brian Waldron, a clinical psychologist with Acquired Brain Injury Ireland (ABII). "Damage to the frontal lobes can lead to anger outbursts and, sometimes, physical aggression.

“Brain injury can affect cognitive functioning including memory, language expression, visual perception and motor skills. Relationship breakdown can happen and people can lose friends. There is a short period of time after an injury where the brain can rewire some of the cells, but other areas of the brain may not get full function back.”

Between 9,000 and 11,000 people suffer a traumatic brain injury every year – a small percentage as a result of suicide attempts. A further 8,500 people will have a stroke or heart attack that results in an acquired brain injury. A blow to the head may shake and damage the whole brain, whereas strokes or heart attacks may only impact on particular parts.

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There is no cure for brain injury. It's about management

For sufferers and their families, acquired brain injuries can be life-changing. Studies show that at least 40 per cent of people with a brain injury will suffer from depression, while 15-20 per cent will develop an anxiety disorder such as social phobia, panic attacks or obsessive compulsive disorder. Post-traumatic stress is a common outcome. The likelihood of suicide increases and, while precise figures are not available in Ireland, a US study suggests that up to 23 per cent of people with a brain injury will think of suicide and around 17 per cent try to take their own lives.

Utterly changed

“These mental health problems could be caused by stress or the brain damage itself, but, largely, they come from trying to manage an utterly changed life, where all you had been hoping for is different,” says Waldron. “People’s sense of self can be shattered when they see that their new difficulties may be permanent and lifelong. Regret can be huge. There is no cure for brain injury. It’s about management. We help people with developing an external memory system such as calendars and lists. Cognitive behavioural therapy can be very effective.”

Services are creaking and families are struggling

Much of the specialist clinical psychological services are provided by ABII and Headway, another brain injury support organisation, but are limited to parts of Dublin and some other urban areas, including Waterford and Sligo. Generic counselling services often feel that they don’t have the skill set to help people with brain injuries, and so refer them back to primary care services, or to the suicide and self-harm centre Pieta House.

“Overall, there is not enough support for people with brain injuries, and the funding we get is not enough to meet demand,” says Waldron. “There is a lack of resources such as funding for community rehabilitation or respite care. I’m not placing blame anyone and I know there are competing demands for money, but services are creaking and families are struggling.”

‘He told me I was brain-dead, stupid and worthless. I believed him’

Emily’s story

I don’t remember being knocked down. I don’t remember waking up. I remember the doctors and nurses asking me how I felt, but I didn’t know. I didn’t even know who I was.

“You’re 15,” they told me. “You have loads of friends. They’re all asking for you.”

But those friends quickly drifted away and they rarely came to see me. My cousin, who I knew I had hung around with, came to see me once, stayed for a few minutes and got out of there as fast as she could.

I was in a wheelchair then.

Until my brother told me, I’d forgotten that I’d been a champion Irish dancer, that it had been my plan to do this for the rest of my life. All I’d ever wanted to do was dance.

I started having dark thoughts. Everything would go black and I didn’t know why. “You freak me out,” my sister said. I didn’t know I had a brain injury; I didn’t even know what a brain injury was. I was learning to walk again; I’d fall, and they’d laugh at me. I was furious. I was hurt and I’d lash out.

I started going for walks on my own, thinking I have no friends and nobody wants me. One night, I walked down a lonely, dark road and hoped that a truck would hit me. Another time, I tried to drown myself in the bath.

I got into the rehabilitation hospital, and I was so hopeful that they would make me better and I could go back to my dancing. Nobody would be laughing at me then. Of course, nobody was laughing at me at all, but I didn’t understand that at the time.

Having a brain injury can make you more vulnerable. I was grabbed at by a man who shoved his tongue down my throat

I’d lost feeling on one side of my body and walked with a pronounced limp. The physiotherapists said there was nothing they could do for me. I had wanted so much to be better; I was heartbroken. I went home, took my teddy bear, and wandered into the forest. I thought I would die there, but nothing happened, so I got up and went home.

Eventually, I went back to school, but I was 18 in a classroom full of second years. They were good to me, but I couldn’t cope and I left.

Having a brain injury can make you more vulnerable. I was grabbed at by a man who shoved his tongue down my throat; I was felt up by a healthcare worker. When I told, I was asked: “did I make those men do it to me? Had I led them on?” I hadn’t. It was so upsetting.

I met a man and I believed he loved me. I was only 21 when I fell pregnant. I wasn’t ready, but I fell head over heels for my daughter. He took control straight away. He was burning through my compensation money. He decided what I could wear and who I could speak to. I was carrying his child when he hit me for the first time. He told me I was brain-dead, stupid, thick, worthless, and I believed him. Brain injury destroyed my confidence.

He was having an affair when I had our second baby and he left me at home to give birth by myself. Eventually, the money was gone and I’d had enough. I threw him out. I begged him not to forget about his two daughters, but he never bothered as much with the youngest.

I wanted to die many times and I thought about how I would do it. Sometimes I stopped myself because I’d think: who will buy a house that someone died in, and then what would happen to my girls?

It got harder when my eldest was a teenager and she seemed to hate me. My youngest was five when she was sexually abused by a teenage girl we had trusted. I was devastated and I blamed myself.

My children are adults now. I idolise them, but they don’t talk to me. I always did my best and I’d love to have a relationship with them.

I can say it’s not so dark anymore. I’m 44 now and my counsellor and the team at Acquired Brain Injury Ireland have given me a sense that I’m not thick and brain-dead. In the past few years, a new physiotherapist has massively improved my walking. I’ve gone on courses, I’ve started working in the old folks home – I have such fun there, I fall around laughing – and I’m in a relationship with a good man who treats me well. I look after my daddy, who has dementia. I tell stories to kids in the library. I am good with people. I still struggle with my confidence and self-belief but I have something to offer, and it’s worth getting out of bed.

‘I can still do anything, just at my own pace’

Liam’s story

I wish I had spoken to someone. I wish that, instead of taking the car that night when I was 16, I’d told someone what was going on in my head. In primary school I was quite active in sports but the academic pressures in secondary knocked the confidence out of me and I lost interest in everything.

Mum and Dad were away that night when I took the car and I’d been drinking. I didn’t plan it, but my car crash was a cry for help rather than a deliberate suicide attempt. The car was destroyed and I suffered a fractured skull, a broken leg and a chipped tooth. I was in intensive care for five days.

Once the family are there to support you, services are sparse, and my parents had to go private a few times

In the immediate aftermath, I spent a month in the National Rehabilitation Hospital. I was able to speak, but my memory and left frontal lobe were damaged. I couldn't recall details and I'd forget things shortly after being told. I felt lucky to have survived such an accident and saw that there were many people in the NRH who were worse off than me, but I felt people were looking at the scar on my head and this made me paranoid, self-conscious and even more socially anxious than before.

Once the family are there to support you, services are sparse, and my parents had to go private a few times. I went to various specialists after my injury: neurologists, psychologists, speech and language therapists and occupational therapists. They did all sorts of tests and told me that, although I didn’t have a learning disability, I might find some aspects of life and work more challenging and that, if the accident had happened when I was older, it would have been harder for my brain to heal.

I went back to school and had great support from my teachers. I doubted my ability to comprehend information compared to other people and found school and exams tough, so I was proud to pass my Leaving Cert. I love to read and I devour books, but at my own pace. Since then, I’ve gone back to education and I even got a degree, but I couldn’t get work in that area.

I’m 38 now but I’ve struggled to find employment and this knocked me back. I did get a job recently and was delighted; I enjoy it, but the hours are long. I’ve never told employers or colleges about my injury, although my parents think I should have.

Since the accident, I have suffered socially. I worry about my health and future and I struggle in large groups. I’ve been depressed and worried.

I’ve been with ABII for the past year and their support has been vital to me; they help lift the clouds and give me a ground to work from. I know that I can still do anything, just a little slower and at my own pace.

*Liam and Emily are pseudonyms