It’s hard to do justice to the way in which Marie Loftus captures Eugene Loftus when she speaks of her late husband.
Her stories (many of which won’t fit within the parameters of these pages, unfortunately) paint pictures of their adventures together, across the country and around the world. She portrays his love of nature, people, art, music and drama, as well as conveying his appetite for fun and his fierce determination.
Mixed in among all this, Marie also tells of Eugene’s illness, motor neuron disease (MND). How they faced it together, receiving support from family, friends and organisations.
We speak for a long time. There’s love and laughter, tears and sadness. In the end, however, Marie sums up their relationship very succinctly: “I was blessed to know him.”
In the kitchen of her home just outside Ballina – near the Sligo border but firmly green and red – Marie settles down over a cup of tea and begins by explaining how she and Eugene met.
They were both into drama and both teachers, Marie primary and Eugene secondary. When Marie first came to Ballina, she joined the local drama group.
“I met him the first night there. Very shortly after we met, we went to a dinner dance together and the rest is history, as they say. We were married a year later. He just had everything I ever wanted. He was into art. He was creative in every way. There wasn’t a thing he couldn’t do.”
Alongside teaching, Eugene also farmed. Soon after he got married, Eugene went farming full-time, milking a small number of cows, eventually going back into sucklers. Their son Shane now farms alongside working as a tree surgeon.
When Shane was born, Eugene combined farming alongside subbing in primary schools. Something he loved.
So much so, he decided he would go back and do his primary school teaching. Having completed the interview stage of the process, Eugene found out upon requesting his Leaving Cert results that he had only gotten a ‘D’ in Irish.
Undeterred, he began studying for his Leaving Cert Irish exam. Marie remembers: “He did the exam the first year and he didn’t get the mark he wanted. He went back in and did it the second time. Into St Muredach’s in Ballina, can you imagine,” Marie smiles. “A grown man going in and doing his Irish Leaving Cert. He got his honour the next year.”
In the end, although he got the necessary grades, Eugene didn’t do the post-graduate course. They weren’t sure if it would be manageable with the farm and he had gotten work in a secondary school. Still, he achieved what he set out to do.
Eugene loved teaching in general, Marie says, because he loved being with people.
“He was a real people person. There were guys coming in here years ago selling insurance and if they could talk football, they got a cup of tea. If they couldn’t talk football, they were out the door,” Marie laughs, as she does often when remembering Eugene.
“Football was his other thing, Mayo football. For about three or four years in the mid-90s he was with the under 16 Mayo team. He was in his element that time.”
However, Eugene’s interests were not confined to football, by any means.
He loved archery and was into cycling. He was outdoorsy and liked camping. He loved nature and animals. He sketched and painted. He played the mandolin, banjo and Spanish guitar. He was in the choir and drama group. He liked woodworking and played tennis.
“Eugene just had such passion for life. If you met him and he had a new passion, he’d convince you to do it,” Marie explains. “He really was absolutely passionate about everything.
“Eugene adored being out on the bog. As in doing turf. I hated the sight of it. He absolutely loved it. I blessed the day when we stopped doing the bog. But anything he did he was passionate about. He was great craic as well. He’d do anything daft just to make you laugh.”
In late 2014, Eugene was diagnosed with MND. The same year the ice-bucket challenge was sweeping the country raising funds for the Irish Motor Neuron Disease Association (IMNDA).
Marie got nominated for the challenge while at a wedding in Portugal that summer. She retired in August.
Eugene began to notice the muscle between his thumb and forefinger was reducing, but didn’t think it was anything serious at first.
“It was when he would be rattling down the ashes more than anything, he would notice that his hand would get stiff,” Marie explains. “He would say, well there’s something funny here now. He said, ‘I must have carpel tunnel or something.’”
Eugene went to his GP and was referred to a neurologist in Galway on 3 December 2014.
“I’ll never forget that date,” Marie says.
The doctor noticed fistulations (twitches) under the skin on Eugene’s arm. This was the nerves misfiring. That day, after tests, Eugene was told he had MND. Both he and Marie were in shock.
He was sent for an MRI to confirm the diagnosis and was referred to Beaumont Hospital for a second opinion. In March he attended the multidisciplinary clinic in Beaumont, which he would return to regularly in the coming years.
After visiting Beaumont in March, they began to tell people close to them.
“Eugene was telling friends of ours, Eddie and Mary. And Eugene said, ‘Well, I’ve come to accept it.’ We knew this since 3 December and this is the middle of March. I’m sitting at the table listening to him saying, ‘Well, I’ve come to accept it.’ I’m thinking, what’s he talking about, sure this is going to go away.
“Then it really dawned on me. This is not going to go away. It’s funny how your mind works. I would be great at reading all the paperwork and knowing what we have to do. I missed the motor neuron bit. It was written on everything we read, but somehow it didn’t go in. It really hit me like an absolute block.
“Around St Patrick’s Day I came home from town, Eugene was standing out the back. I got out of the car and I just broke down. He said, ‘Marie, what is it?’ And I said, ‘This is not going to go away.’ He said, ‘I thought you knew. I thought you were just being brave.’ I said, ‘Eug, somewhere in my head there was a mental block.’”
After this came acceptance for Marie.
“Then we said, ‘Right, look, we’re going to live the best life we can. We’re going to do everything we can. We’re not going to let this dictate what we’re doing.’ That’s exactly what we did,” says Marie.
At this point Eugene was well. He was able to farm and do most things as normal. As time went on, he needed to manage his energy levels more. He was having occupational therapy (OT), some of which was funded by the HSE and some by the Irish Motor Neuron Disease Association (IMNDA).
In 2017, he partied the night away when Shane got married to Karen. Their wedding was on the farm. In 2018, he organised a trip to Prague for their 30th wedding anniversary.
Eugene and Marie had a camper van. When they would go to Beaumont they would make it into a trip, maybe stopping in Enniskillen and Belfast on the way. Marie says it kept the visits from being all about the hospital.
In April 2018, Marie went out the back one evening to put in the hens. She fell over the gate and broke her leg in three places, meaning she would be on crutches until that September.
By this time, Eugene’s use of his hands was really affected and he couldn’t carry things. He could walk, but was getting more frail. The couple were in a difficult position. They accelerated getting a chairlift installed. Friends and family rowed in, doing shopping and taking them to appointments.
“We were like Mutt and Jeff here in the mornings. We had a push table. I would load it up because I had the hands. Eugene could push it over to the table, because I couldn’t with the crutches. I could take everything off and feed us.”
Eugene got the flu and was upstairs in bed more. One day Marie tripped trying to send food up to him on the chairlift.
“I said, ‘This is cracked.’ So I rang the public health nurse and said, ‘I think we need help. I’m on crutches, he’s upstairs all day because he has the flu and I’m down here. I can’t get the washing out on the line and neither of us can carry things.’ She said, ‘You need Home Help.’
“So the Home Help came because I was on crutches, which was great in a way because it took the focus off Eugene needing it. It also was a step for us, because I’d be saying, ‘I can do everything. I don’t need Home Help to mind Eugene.’
“I remember I was sitting on the sofa looking out at the trees thinking, there has to be learning in this. Why have I broken my leg? There has to be a lesson in this. I realised as the time went on that it was to accept help.”
In 2018, Eugene began to use a wheelchair to conserve his energy. A motorised wheelchair specially tailored to his needs would come later. He still went out and about as much as he could.
“I remember one time he had wheelchair envy. We went down to a concert in Sligo and a lady had just gotten a new motorised wheelchair. They were the two wheelchair users in the front row. He said, ‘Where did you get your wheelchair?’ That’s a fine yoke. I’d love one of those. Do you want to swap?’ He was in a push one because we were waiting for his motorised one to come.”
In February 2019, the sitting room downstairs was converted to a bedroom with an ensuite.
MND affects everyone differently. For Eugene, it affected him physically. By April 2019, he couldn’t sit up for long and found the bed most comfortable.
Even with these changes and challenges, in September Eugene attended a concert organised by a friend of his in Grange, Co Sligo.
He passed away in December of that year.
Of course, for Marie, it’s not easy to talk about this time. She says going through MND with someone, there will be hard days, but she’s grateful for the time it gave her to spend with and say goodbye to Eugene.
“MND is a horrible disease, you know you have a finite amount of time. The message I would want to tell people is, live every moment you can. It gives you an opportunity to do all the things you want to do and say all the things you want to say.”
During Eugene’s illness, he and Marie accessed many services through the IMNDA. There was a visiting nurse and occupational therapy (OT) provided. The organisation financed a special mattress for Eugene and the wheelchair. Not having to worry about finances, Marie says, is relieving.
Invaluably, they also provided them with extra care hours. This gave Marie time to do the shopping, go for a walk and do whatever else she needed to. Both Marie and Eugene also availed of counselling through the IMNDA.
“They have thought of everything to make it as holistic a care package as possible. I knew the value of it. So I thought, there are other people after me who are suffering and need this. If I can keep up the awareness of this, I’m going to do that.”
In June 2019, she and Eugene hosted a Tea for MND event in their back garden, raising over €8,000.
In 2020, after Eugene’s passing and while in COVID-19 lockdown, Marie hatched another plan. She decided to walk the distance from her house to the IMNDA offices in Dublin, 230km, virtually within her 2km restricted radius during the month of May. That raised over €7,000.
In 2021, she undertook an epic walk with a friend who had lost her niece to cancer. They decided to actually walk to the IMNDA offices in Dublin, this time in aid of both the IMNDA and Cancer Care West. This was done over 14 days, but not consecutively.
“We ended up walking through the Phoenix Park at the end. I knew it was going to be emotional for both of us. I remember thinking, I can’t believe we’ve done this. I was walking down the Phoenix Park thinking, what are we like? I’m 64 for God’s sake, we’ve walked to Dublin. Anything is possible after this!”
Eugene loved his garden and Marie keeps it up for him still. It’s where she can connect with him.
“He said to me, ‘Marie, whatever you do. Keep the garden.’ The first year I was going around the garden and I was saying, ‘Eug, I don’t know whether I’m pulling a weed or a plant here.’ I really didn’t. Now here we are three years on and I’ve an idea of what I’m doing. I’m enjoying it and taking pride in it.”
Their granddaughter Runagh has inherited Eugene’s love of nature.
“I was bringing her out the road one day. It was September, so she was a year and a half. The swallows were lined up and I hadn’t even noticed them, because I was watching her. She said, ‘Nana, birdies.’ I thought, God, Eugene, you’ll never be far away. He always marked the coming and going of the swallows.”
In 2013, prior to his diagnosis, Eugene began planning a One-Act Amateur Drama Festival in Ballina. It took place the following year and was a roaring success. COVID-19 excluded, it has taken place every year since. Marie is still heavily involved in its organisation.
In the coming weeks, on 2, 3 and 4 December, the One Act Drama Finals will take place in Ballina.
“He’d be so proud of that, absolutely,” says Marie.
After all, for Marie and Eugene, it all started at drama group.