'I feel privileged to have had a very lucky life' - Riverdance manager suffering from the same illness that killed his father
When Ronan Smith found he was suffering from the same terrible illness that had killed his father, he sought solace in his friends
'Is this genetic?" Ten years ago this month that sentence jumped off the page at actor and producer Ronan Smith. It was from his own diary, but he had no recollection of writing it and no recollection of the thought. And, in a cruel irony, it came from an entry in which he had wondered about the cause of his own memory loss. "I had no idea when I read that that Alzheimer's could be genetic," he says. "It was like reading someone else's words. It seemed to underline to me what I already sort of knew."
Smith's suspicions had come after noticing that his short-term memory at work, following through on conversations, was worsening. He would read things he had written and not have any memory of writing them. Four years ago his GP referred him to the Mercer's Memory Clinic at St James's Hospital and within a matter of weeks he was diagnosed with younger onset Alzheimer's. He told his wife, Miriam and three adult children.
Medics told him what to expect, but his real understanding of what was to come was informed by personal tragedy. His own father - theatre legend Brendan Smith - had died from the illness and the family had struggled for years with the stigma and pain that the illness wrought on their father. The presumption might be that the illness must somehow have been passed on, but most Alzheimer's cases are sporadic - meaning they don't know what causes them. The intergenerational curse of the illness in the Smith family is likely just a cruel coincidence.
It meant however, that Ronan had seen the potential horror of the illness close up, the way it can take away huge parts of someone's life. His father was the larger-than-life impresario who started the Dublin Theatre Festival in 1957, presided over the Olympia Theatre, and ran the Brendan Smith Academy of Acting. Many senior figures in the Irish theatre world, including Michael Colgan and Julian Erskine - now a friend of Ronan - and Julian's wife, the late actress Anita Reeves, came up under Brendan. He cut a distinctive flourish in his Russian hat and made sure he was seen at every opening. He was renowned for his wit and nicknamed Captain Mainwaring after the Dad's Army character he resembled. Nobody could suspect that this brilliant, crafty and very assertive man could be faltering.
"My father was very devious," Ronan recalls. "He hid his illness from us for a long time. His office floor was covered with papers left on the floor to remind him of things. He really wanted to keep everything in his head. The desperate sadness of that, is that he couldn't share what he was going through with anyone."
Ronan was himself, by then, a noted actor and was touring Australia with the Abbey when he began receiving a series of increasingly distressed telephone bulletins from his mother. "She was getting more and more upset and disturbed because he was very stressed. He was very difficult to have a conversation with. Everything turned into a row. Everyone initially thought he was having a bad temper thing, some kind of mood issues or something. I heard so much of this down the phone from Australia, I thought when I come home I'll go into the office and try to help."
When he came back to Ireland, Ronan realised that his father was in danger of throwing away everything he had worked all his life for, if things continued as they had been doing. "Michael Colgan met me privately and said 'you've got to get your father out of this job'. He told me, 'it's a disaster'. My father wasn't functioning by then, or capable of the job. We were constantly trying to manoeuvre him and say you're stressed or you need to take a day off, but that was really not going to work. We tried to bring in board members to help him, too."
Eventually Ronan and his family had to take the difficult decision to have Brendan committed. "There was an enormous amount of stigma and I didn't even hear the word Alzheimer's until a month-and-a-half before his committal. I didn't know if he was having a nervous breakdown or what was going on. He was destroying his achievements and the festival and theatre would have collapsed."
The committal, itself, was a distressing process. "In those days you rang ahead to St John Of Gods where we had brought him for an assessment. He had been very bad tempered and uncooperative. We said this is still progressing and getting worse. We had to arrange committal. We brought him in for what he thought were tests and then we said 'you have to stay overnight now' when really he wasn't actually ever going to come out again."
Brendan lasted another year-and- a-half, and in that time Ronan saw his father change physically, as well as mentally. "The disease attacks the brain, the cognitive functioning is compromised, and finally the physical body is no longer serviced by the brain. Appetite diminishes, movement is affected. My father used to have the Alzheimer's shuffle - sharing a space with these other patients, all of them taking tiny little steps."
Ronan says that he missed the opportunity to ever really talk to his Dad about his illness. "That would have been impossible, because he was so determined to hide it. He had moved to a nursing home in Donnybrook. There, he underwent a serious deterioration. His language disappeared. I visited a silent but thankfully smiling, very ill person, at the end. When I got the phone call that he had passed, it wasn't a shock, in many ways it was a release."
In the years following his Dad's death, Ronan continued his career in the theatre world. In 1997 he received a call from his old friend Julian Erskine, who, a couple of years previously, had helped take Riverdance to the stage and was by then struggling to manage the enormous workload that came with meeting the unprecedented worldwide demand for the show.
"It was like getting a seat on a rocket ship," Ronan recalls. "I had one conversation with Julian and then I was on a plane to America. Riverdance felt like a three-trailer juggernaut thundering down the road, but the people driving it were almost being dragged along by the tarpaulin behind.
"There had never been anything like it. People all over the world were clamouring to see it. It was such a privilege to be part of it for those years." Ronan continued to work on the show right up until 2010, by which time his illness was becoming apparent to him.
Erskine remained close friends with Ronan and after his diagnosis, the Riverdance producer was a great help to his friend. The pair go kayaking together and any awkwardness around the condition is effortlessly dispelled by easy teasing between them.
On May 3, which is Alzheimer's Tea Day, Riverdance will put on an invite-only performance at the Alzheimer Society headquarters in Blackrock. The Alzheimer's choir, the Forget-Me-Nots, will also perform Cloudsong, the theme from Riverdance. "On June 21, we will also do a 12-hour danceathon at the Gaiety in aid of Alzheimer's," Julian explains. "We start dancing at 10 in the morning and dance until 10 at night. The Riverdance performers will be there doing numbers from the show as well."
Ronan has now retired from work - he was a line producer at the Gaiety panto until last year. "That was a decision that I would say brought grief and relief. When I looked closely at my stress levels, I realised the effort I was making was taking a great toll on my general health. I know that I would have to take two or three times' longer to do a task by now, if I had stayed."
He has thrown himself into advocacy. He is also the first board member of the Alzheimer's Society of Ireland to actually have the illness. "That is an important move, but of course, there have to be safeguards," Ronan explains. "If three members of the board have doubts about my capacity, they can refer to the chair."
Ronan's appearance of total normality (although he protests "I put on a good act, you are talking to an actor") underlines the fact that dementia and Alzheimer's are, in many ways, a fairly under-discussed issue which affects a vast swathe of the population. The Dublin man is now one of 48,000 people living with dementia in this country - 4,000 of whom are under the age of 65. The numbers with dementia are expected to double in 20 years and treble in the next 35. "One of the most difficult parts of the illness has always been the stigma around it," Ronan explains.
The society is running an 'Understanding Together' campaign, which is helping. It has always been such a difficult subject. The Big C was Cancer, everyone knew that, until we got mature about it. Alzheimer's also has that unsayable quality about it." A key aspect of transforming attitudes is going to be working together with people who have these conditions, he says. "Our mantra is: nothing for us without us," he says. "I take medication but it's really of little impact."
The life expectancy of someone with Alzheimer's is between eight and 20 years and Ronan is now on year nine, he explains.
"Only now in the last four or five months am I finding myself significantly compromised. The advocacy work is more challenging and onerous. Reading a book would be very hard at this point, unless I religiously did a chapter a night.
"The feeling of a ticking clock is inevitable. The drug companies are chasing a huge prize of a breakthrough, but until then we wait. Some people say why me, but I say why not me.
"I genuinely make no distinction. I have to have some hope and some optimism. I want to be able to manage, accept and accommodate the illness as best I can and try to make myself feel useful. I can only say I feel privileged to have had a very lucky life."
The Tea Day 2018 event featuring Riverdance and The Forget Me Nots choir in The Orchard Day Care Centre in Blackrock, Co Dublin is an invite only event. To attend a Tea Day event in your locality or to host a Tea Day of your own, log on to www.teaday.ie