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‘I see my diagnosis as just a new chapter in my life’

by Louise Doyle

ON an ordinary day in 2006, Pat McCarthy finished up for the day as a social worker in Letterkenny University Hospital. Ten hours later, he was rushed back to the hospital in an ambulance having suffered a massive seizure.

The no warning incident would see the father-of-two diagnosed with epilepsy and spend the next six weeks in rehabilitation learning to walk and talk again.

In the almost two decades that have since past, Pat has been giving a voice to those with the hidden disability in his own community and beyond.

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Today marks International Epilepsy Day. As part of the day, Epilepsy Ireland has devised a new campaign aimed at increasing public understanding and awareness of epilepsy, as well as promoting knowledge of seizure first aid and the key words of Time, Safe, Stay.

Having qualified as a social worker, the Ballintober native moved to Donegal in 1996 to take up a six-month contract with the HSE. Having started his working career in Inishowen before moving to Altnagelvin Hospital in Derry, Pat then secured a full time post in LUH. He happily settled into life in Donegal meeting his wife, Heather along the way. The couple have two daughters, Katie and Jane.

Pat is no stranger to receiving more difficult news, having been diagnosed with Multiple sclerosis (MS) when he was student in 1994 while at college in Coventry, England.

Speaking to the Donegal News, Pat said having a good perspective in life has helped him face adversity head-on. “I was living with MS fine right up until 2006, when, in the middle of the night, I had a seizure in my sleep. I remember I had left work that day at 5pm and came back in at 3am the following morning by ambulance. I was taken to intensive care. When I came around I was told I had epilepsy. I couldn’t move from the waist down. I was transferred onto the ward and then to rehabilitation for six weeks, where I was taught how to walk again. I also had speech therapy.”

Pat said he viewed rehabilitation as a series of challenges to meet.

“When I could move my big toe that was a huge achievement. Rehabilitation was very challenging. It was very much about being disciplined, coming from a sporting background I knew that. I enjoyed the challenge. The encouragement was always there.

“When I was discharged from rehabilitation, someone asked me at the door what I was going to do next, and I responded, ‘I’m going to do the 5k’. I could hardly walk but that was the challenge, and I did the 5k.”

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Suffering eight seizures since his diagnosis, of which he has no memory of when he comes around from them, Pat has also experienced absent seizures.

He said humour plays a great role as a coping mechanism.

“I have found a lot of humour in situations. I remember coming around from a seizure one time and I began speaking Irish fluently, despite only knowing a little bit of the language,” laughed Pat.

“I just get on with it. I could have a seizure at any time but I can’t stop my life because of it. I wear a seizure bracelet which is helpful when I am out in public as it tells a person I have epilepsy.”

Though having to give up his much-loved job and having to stop driving, Pat said he doesn’t feel a sense of loss because of epilepsy, but rather that he is living his new chapter.

“I see my diagnosis as just a new chapter in my life. I always see the opportunity. I can stay at home or get out and meet people and have a cup of tea, so I choose to do that. I am involved with Letterkenny Gaels, with Epilepsy Ireland and other community and voluntary groups.

“I’m also involved with groups in Donegal working with the council to see how Donegal can be more accessible for those in the county and tourists with disabilities. The access officer in the council is so forward thinking, and they are always looking at ways to improve access.”

Asked if he missed being spontaneous in life, Pat said he didn’t.

“Having epilepsy is about forward thinking. Everything I could do before, I still can but just with that little bit of extra planning. I’ve had to adapt. This is my next chapter. I look at what’s out there. I can’t drive anymore but I don’t miss it. The town bus service is great and the drivers couldn’t be nicer. I have an analogy of the cup verses the mug If you have the mug you don’t miss the cup. Not driving opened up more avenues of meeting people on the bus. When there’s a change, it’s up to you how you deal with it. I’ve seen my life changes as an opportunity to get involved with a broad range of services like Cara House, the GAA.

“It is humbling. I am quite fluid in terms of how to make the best of a situation. My big ambition is that once I achieve one thing, I am onto the next. I never lost confidence, and if I have a down day I turn to sport.

“I don’t miss what is behind me. I have a calmness within me, and a new way of looking at things.”

Pat said he would like to see more funding for services and a greater awareness of the work of Epilepsy Ireland. Asked what advice he would give a person receiving a diagnosis of epilepsy today, he said: “I would tell them that it is going to be a change. There will be good and bad days, it is about how you approach it. I’d also advise them to speak with their GP and support worker. Great strides have been made regarding epilepsy awareness. It is a hidden disability, so it is about offering people with epilepsy opportunities to ensure they are included. Greater funding is needed to roll out programmes and provide opportunities to those with epilepsy.

“Epilepsy needs further research, as well and greater involvement in education and tourism. People with epilepsy living rurally also need to know supports are in place.”

Pat praised his wife, children, brothers and sisters.

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