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My name’s Larry Masterson, I’m from Donegal and I had a stroke and brain injury back in 2015. I have aphasia now, so I have a story to tell – something I think is worth sharing.

Seven years ago I underwent heart surgery in Dublin. I was about nine hours on the table and thankfully came out the other side. During a visit by my wife towards the end of my planned stay in the hospital all I could say in response to her questions was: ‘I don’t know’. She knew I was having difficulty finding words, and it turned out I had had a serious stroke.

I couldn’t speak at first. I had episodes of short-term memory loss and some cognitive problems, but as I had no other physical issues it was hard for people to recognise what was wrong. Winifred got me help. I was very fortunate because she’s a Speech and Language Therapist. She understood what was going on. I’m forever grateful to my wife and family and need to thank them for what they’ve done for me. I didn’t get through this myself – it was because of them.

I don’t recall much in the days immediately after the stroke. I know I was in hospital for a couple of weeks and got great help with speech therapy, physio, and occupational therapy (OT). I got the support I needed, and I was lucky that the stroke team were quite optimistic about the eventual outcome. They arranged for me to see the HSE Community Neurological Rehabilitation (CNR) team when I got home to Donegal, as I had had the stroke on top of major heart surgery. Much of the first year was difficult and I needed that help.

Having a brain injury is like a grieving process.

Having a brain injury is like a grieving process. I was worried about my loss of identity. I went through shock and denial. I didn’t even believe I had had a stroke! Then there’s the pain and guilt of being an invalid, and of not being able to get up and do the things you want to do. But a brain injury doesn’t care that you have things to do or people depending on you. There was also depression – loneliness. After all, life has just changed forever. People come to visit you, and they say: ‘you’re fine!’ But brain injury can be an invisible disability. People can’t understand what’s going on for you.

I continued to go to a number of professionals for help and then I discovered, maybe after a year or so, that my speech was getting better. I could understand questions. I could sit in a room and take things in. But if there were bright lights, or four or five people there at the same time, it was overwhelming. I couldn’t have a conversation.

It was also around that time I started to think more about the stroke. I wanted to learn more, to work out what other help was in the community and what people could do for themselves. Before my stroke I had worked in the health services all my life: with children and young people; in residential care and aftercare; in foster support and in the community. I had worked in health promotion and public health and got involved in management. I had built up skills in bringing in money for projects, and I was used to being creative and resourceful.

It seems the support stops before the recovery does.

So, I started to meet people for cups of tea. I met up with my colleagues in the health services again and told them what I was trying to figure out, and they were very supportive. I learned that on average, 150 people in Donegal have a brain injury or stroke each year. There are rehabilitation services in the hospitals, but once you’re discharged, you’re really on your own. It seems the support stops before the recovery does. That’s not to take away from the work of the CNR Team. I was with them for five years and I owe a lot to them. But if you don’t have certain conditions, you won’t qualify for that service.

Donegal is a big county. It’s hard to find the services you need. I came across a lot of people over the years – hundreds of people – who had no help or support from community services after their brain injury. That can be a dark time, when you’re in the depths of no return, and it looks like nothing is going to happen for you. It’s then you need rehabilitation services to let you know what’s there to help you and get you into a group. Having peer support, and strategies to manage life at home, that’s vital.

Hope raised me.

Before my brain injury I had worked in Social Farming – a project started through my work in the health service – but I couldn’t go back to farm life and my old job so I decided to create a support network. I suggested to the CNR team that we set up ‘Different Stokes for Different Folks’, a peer-led group for people with brain injury and aphasia. We called a public meeting and a half a dozen people joined. We went on the local radio, did the local papers, and next thing we’d have around 25 people coming to the group. As the days and weeks went on, it continued to expand.

The group was about wanting to give people hope. Nobody tells you straight after your brain injury that there’s hope. The doctors are there to fix you, and I suppose they can’t build up your expectations. But hope raised me, and I want others to know that there is hope after a stroke and brain injury. The group lasted 6 years and has just closed, but other supports have been put in place in collaboration with the HSE and we’re moving on to new projects for the stroke community.

There’s a postcode issue.

When you accept that you have brain injury, you can start to regain some of the abilities you’ve always had. But you need the right support, and you need people around you. That’s the problem that a lot of people have in Donegal. There’s a postcode issue. If you live in a big city it’s one thing, but if you live in rural Ireland you have to fight hard for services. The health service needs to listen to people with lived experience, to find better ways to create more equal access to rehabilitation, and to improve understanding and communication about brain injury.

I think since Covid, things have come on a bit. We’re able to talk more to one another and some services have become available online. I’m involved in an Aphasia Home Café through Zoom, and stroke survivors should seek that out. It’s a gathering and it’s about conversation. Survivors need to talk about their feelings, and it’s useful to talk to your peers first. Once you have the confidence to do that, you can get out and do other things.

Social connectedness. That’s what really helps.

A big part of recovery for me is social connectedness. That’s what really helps. I’m involved in a group now called Yellow Wood Arts, which connects stroke and brain injury survivors with the arts. Recently we performed a piece called ‘Chasing the Light’, where survivors spoke about their experiences live on stage. Some of these people never thought they’d be out of the house, let alone out there expressing themselves through song, movement and creative arts. Afterwards we had coffee and a chat, a bit of craic. That’s what it’s about. Inclusivity.

Is there life after brain injury? Hell, yes there is! I was confused and scared when the brain injury happened. I remember lying on the couch at home, with no energy, barely able to make it through two hours in the day. Fast forward three years and my life was getting back to normal – a new normal, and a good normal. I have made an excellent recovery, there is no doubt about that. It was a lot of hard work and a lot of rehab, but I never allowed myself to give up the goal of getting back to where I was before the stroke. Even though my life will never be the same, I’d say I have happier life than I ever did. I have a lovely family around me, and it’s great to be with my wife, my son and his partner and our first grandchild. One of the greatest lessons I’ve learned from brain injury is that every year is a gift. You need to stop and smell the roses.

Rehabilitation is a human right. It shouldn’t depend on your Eircode. Support the Right to Rehab.

#RightToRehab #UNCRPD

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