9 December 2022

Niamh’s Story

I don’t think anyone would sit down and have a chat with me today and know I had a brain injury. My injury was always invisible.

I don’t think anyone would sit down and have a chat with me today and know I had a brain injury. My injury was always invisible. But to those who know me best, my struggles weren’t invisible.

Back in 2008, more than 10 years ago, I became very ill out of the blue. I was just 19 years old and it started with a jerk in my leg. This was the first sign of a seizure which put me in Portlaoise Hospital on and off for weeks. I suffered multiple seizures and was transferred to Beaumont Hospital in Dublin. I was treated for many different neurological illnesses, but nothing worked. With every seizure, I was losing a part of myself and coming closer to death.

I even received the last rites twice. Doctors were fast running out of options. As a last-ditch effort to save me, I was blindly treated for an auto immune triggered Encephalitis (brain swelling), all while in a medically induced coma. Eventually, with treatment I started to come back to life. But I was a shadow of the person I once was. I was seriously compromised. My vocabulary was non-existent, and the psychotic effects of the illness meant I was hallucinating a lot. Recovery was not going to be easy. I received intense speech and language therapy as well as occupational therapy at the NRH. I could express myself and do things for myself again.

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But I wasn’t ready to face the world as a 19-year-old woman. My confidence was gone.

When I came home to Laois, I was lucky to get help and support with Acquired Brain Injury Ireland through their community keyworker, Sinead. My aim was to go back and pursue the second year of my degree. Sinead was someone I could talk to, who understood my confusion and frustration with my situation. My friends’ lives were moving on while I was struggling to keep control of mine.

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It helped more than anyone will ever know to have someone there who understood the ins and outs of my injury and the feelings that went along with it.

My ability to learn had changed too. Short term memory problems meant I had to change my approach to learning in order to get through college. Sinead helped me use different approaches to learning; the most helpful of which was mind-maps. I could approach learning visually and this tool helped me graduate from Maynooth with a 2:1 degree and saw me go on to pursue a Masters. My meetings with Sinead happened over the course of months leading up to my return to college. Without her support both psychologically and practically, I don’t think that return would have been possible.

I was so conscious of my speech for years after my brain injury and my confidence took a huge knock. I also struggled emotionally, and I suffered terribly with fatigue. I’d hit a wall and nothing would bring me back, only a long sleep. Simple things were overwhelming to me. Over-catastrophizing was one of my favourite hobbies

The first day of my Masters, I missed my bus in Dublin and the tears came. A 22-year-old standing at a bus stop crying, thinking nothing worse could have happened, that my day was completely ruined and nothing could fix it. It was a small thing, but I remember how the anxiety that runs through you makes nothing else matter in that moment.

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After the brain injury, having the emotional capacity to deal with certain things was not there.

Brain injuries can be invisible and the stories and struggles behind them can be too. As a person living with an acquired brain injury, the support I received from Acquired Brain Injury Ireland was invaluable to me. In so many ways, if life deals you a brain injury, the odds are stacked against you, because the whole area is under-serviced. But Acquired Brain Injury Ireland has been helping people to get back their lives all over Ireland for so long. They have given a voice to a group of people who may be otherwise voiceless.

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I’m so thankful to have found a community of people who understand my story and who fight for other people like me.

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