How Sean inspired everyone he met

THAT first meeting went very well.

The members of the newly-formed Co-Action Drama Group in Castletownbere were full of enthusiasm. Everyone had ideas about our first project — what we should do, who should play what part and how on earth the Eastenders cast managed to remember all their lines.

We were to meet for two hours once a week and at the suggestion of Co-Action’s Conor McAtasney, began developing stories inspired by issues outlined in the Co-Action Handbook. Conor’s idea was that we would eventually film our three stories with a view to posting them on Facebook and YouTube.

And no one was more committed to this ambitious project than Sean Bartels. No matter what his own particular issues might be — and there were times when all was far from well with him — Sean was always a dignified and thoughtful presence, who inspired others to give of their best.

Sean and I often discussed the scripts we were in the process of developing, and despite the fact that he was battling serious health issues, he would often go home after our sessions and write out several pages of script ideas and pithy plot ideas to show me the next week.

It was after one such conversation that I realised how truly remarkable a person Sean was.

He was explaining why he felt unable to act with anyone other than his girlfriend in a sketch which depicted a young couple first getting together.

“Look, Denise, I’m really sorry but the thing is, I have to work with Colette on this,” he said. “It’s because I’m a hopeless romantic you see,” he concluded serenely. And who was I to argue with that?

The next week I bought him in a copy of Shakespeare’s Love Sonnets, in recognition of his unique character, a gesture, which pleased him no end.

Mildly affected by Downs Syndrome, in later life Sean developed a serious kidney problem and had to spend many hours on dialysis with frequent visits — and admissions — to hospital when the dialysis failed to work.

One of the most difficult side effects for this fiercely independent young man was the loss of school time and the fact that in order to retain his mobility he had to rely on a wheelchair.

Sean eventually underwent a kidney transplant, which greatly improved the quality of his life.

But then some years later he lost a part of one leg to the cancer, which would eventually claim him at just 36 years of age.

It was obvious that behind such determination there was an extraordinary support network — his mother Mary, siblings Adrian, Edina, Siuna, Esther, a caring community and his friends and staff of what came to be Sean’s second family, at Co-Action.

When the call came early one morning to say that Sean had passed away in the night, I wasn’t surprised. Sean had become increasingly unwell over the last few weeks. But such knowing hasn’t made the loss of this rare soul any easier for the many who miss him still.

It so happened that it was Drama Group day. We spent our time together talking quietly of Sean and eventually wrote a lovely poem about him that was read out at his funeral.

“Sean was not only a great communicator but also a fantastic mediator here at the Centre,” Co-Action’s Conor McAtasney said. “He will be sadly missed by so many.”

Sean’s mother, Mary Bartels, kindly shared some of her cherished memories of Sean with me.

* The house must seem very empty without Sean.

>>It does. Sean was a rogue, full of fun. He loved socialising, going out with his sisters to discos, parties or just out for a pint. Sean enjoyed all the good things in life.

* I believe you were in Africa when Sean was born?

>>Yes. We were in Kenya. My husband, who passed away last year, was Dutch.

He was a horticulturist and he was working in Africa at the time.

Sean was assessed for Downs Syndrome. Fortunately he had no other ill-health problems.

In 1986, my husband contracted a rare viral infection of the brain and we moved to Holland. Sean went to a special school there. He had mastered French easily enough but he didn’t get on so well with Dutch.

* You are not originally from Eyeries, are you?

>>No, I’m originally from Dublin, but we had bought a holiday home there several years before, and we were beginning to find Holland too crowded — so we decided to give Eyeries a try. And we’re still there today.”

* Did you find the services that you needed to help with Sean’s development?

>>Not locally, no. At first Sean attended the Girl’s School in Bantry where there was a Special Needs Class and in next to no time he had settled in well and made friends. But Sean always made friends, no matter where he was.”

* Then Co-Action came into being. Not having to travel so far must have been a relief.

>>“Yes it was. Before the Castletownbere Centre opened we would drive Sean into town to catch the bus for Bantry. When Sean had kidney failure he had to have dialysis four times a day and that made school and travelling difficult. But as usual, he dealt with it and got on with enjoying his life. He loved his box sets, PlayStation, socialising and chatting with his friends. He was always just so brave, so matter of fact, and he came to the conclusion that, considering the alternatives, the wheelchair wasn’t such a bad bargain.”

* Sean’s independence is something everyone remarks on.

>>“Oh yes. He insisted on travelling to Dublin on his own and he visited his sister in the UK. We were lucky in that Sean’s speech was good, so even though I worried like mad when he went off, I knew that he would always speak up for himself. , When he was 21, Sean decided he wanted to live in the Co-Action Group Home in Casteltownbere. He had his own room, his special chair, a television his music and his friends around him”

* Not long after I first met Sean, he had to go back into hospital.

>>“It was for a kidney check. But it was then that they diagnosed the cancer and it was decided that amputation was needed. Sean’s attitude was, as ever, if it has to be done, then let’s just get on with it. But then he got pneumonia and had to go back into hospital.”

* And yet through all this, he was still coming to the centre whenever he was able.

>>“Yes, The centre and everyone there were his second family. On his last night, Sean asked for his favourite tortellini and went to bed early to catch up with a couple of episodes of Fair City and Home and Away. He’d just finished making a complicated Lego Star Wars model and he was tired. He became increasingly weaker as the evening progressed until eventually, he just slipped away; it’s such a huge loss.”


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