‘If life deals a brain injury, the odds are stacked against you’ - Laois woman'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. 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 autoimmune-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.

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.

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.

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.

Reproduced with permission of Acquired Brain Injury Ireland

‘Don’t Save Me, Then Leave Me – give me a pathway home’ is a new campaign launched for improved rehabilitation services for brain injury in Ireland launched by Niamh Cahill with Acquired Brain Injury Ireland CEO and Co-Founder Barbara O’Connell at 14th World Congress  

Speaking at the event organised by the International Brain Injury Association (IBIA) in partnership with Acquired Brain Injury Ireland, Ms O'Connell called for an investment of €6 million per annum to meet urgent need to help people like Niamh.

“19,000 people in Ireland acquire a brain injury each year, and many of these end up unnecessarily in nursing homes long-term. This must end. The slogan of our campaign is ‘Don’t Save Me, Then Leave Me – give me a pathway home’.

“The truth is, in Ireland, there is no clear pathway for survivors of brain injury. Once they’re discharged from hospital, their future is in the hands of a geographic lottery – the system is under-resourced and under-funded. Assessment Teams and specialist brain injury Case Managers can play a key role in addressing these issues at minimal cost to the State,” she said.

ABII is calling for €2m to establish a nationwide brain injury Case Management service and €4m for three National Assessment Teams for young survivors living inappropriately in nursing homes.

“This would enable survivors to move much more effectively from acute hospital care, through specialist in-patient rehabilitation if needed, and on to community-based services. Doing so also avoids delayed discharges from acute hospitals, frees up beds in our National Rehabilitation Hospital, reduces the burden of care on families and creates significant cost savings to the State,” said Ms O'Connell.

ABOUT Acquired Brain Injury Ireland

Acquired Brain Injury Ireland says it is an internationally accredited provider of community-based neuro-rehabilitation services for people with an acquired brain injury and their families. The organisation says it works in communities across Ireland to support and empower people to rebuild their lives, as well as campaigning and advocating for the rights and needs of this hidden group in society. More at www.abiireland.ie