'It was worth the fight': Disability campaigner finally moves into her own home

Earlier this year, Geraldine Lavelle told the 'Irish Examiner' about having to spend a decade in an institution. Now she tells SORCHA CROWLEY about her delight at having her own home

After almost a decade in a care home in Sligo, Geraldine Lavelle has moved into her own home in Castlebar, after the HSE confirmed it would provide care to enable her to have a place to call her own. Picture: Karen Cox

Pat Lavelle has to buy a bigger turkey this Christmas and he couldn’t be more delighted. His daughter — the disability rights campaigner, neuroscientist, and author Geraldine Lavelle — is finally back in her native Castlebar. Not just for Christmas, but for good.

Ms Lavelle knows more than most that change can happen in an instant, or sometimes a lot longer. Her destiny changed in a heartbeat one morning in October 2013 when a lorry knocked her off her bicycle, leaving her paralysed from the chest down. She fought for her life that day but didn’t know her longest fight was yet to come, one it would take a decade to win.

Her victory eventually came to pass last month when the HSE finally provided her with the 56 hours a week of care support she needs to live independently in a specially-adapted home of her own, like any other 37-year-old. 

It meant she was able to leave the residential care home in Sligo she had been stranded in for a decade and move into a bungalow in a quiet suburb of Castlebar just a few weeks ago.

Being back in Castlebar means Geraldine sees family members, including her niece and nephew, Saoirse and James, much more often. Her new year plans include returning to the workforce, writing her second book — and a ‘lovely summer holiday’. Picture: Karen Cox

“It was worth the fight,” Ms Lavelle tells the Irish Examiner as she gazes around at her new living room with a look of disbelief. A silver-baubled Christmas tree stands proudly beside a high insert stove which her 11-year-old nephew James has assumed special responsibility for lighting regularly; he even advises on fuel quality. A jolly Santa sits on the mantlepiece above, his green and gold legs dangling off the ledge. To think that this is all her own still feels “surreal” to her.

It hasn’t fully sunk in yet. She even wonders if she has to return to the care home. “I haven’t fully realised that I’m here now. The fight’s over,” she says. “I can relax. It’s the calm after the storm,” she says, closing her eyes with relief.

The “fight” was a 10-year campaign Ms Lavelle took all the way to the Dáil in her bid to live as an independent woman. It took “about 90%” of her energy, strength, and willpower between day-to-day meetings, emails, and calls. 

It was a “constant drain” on her personality and motivation levels. “It just consumed all your free time. You’d wake up at night thinking about it. You’d go to bed thinking about it, it was just constantly there, like weights, or anchors and now I just feel like they’ve been released,” she says.

Geraldine Lavelle says of her new home in Castlebar, County Mayo: 'It’s far more relaxed. And even outside there’s no constant traffic all the time, morning to night. It’s definitely a lot more peaceful.' Picture: Karen Cox

Between her ongoing battle with the HSE for care hours and the busy physical environment of the Sligo care home fronting a noisy town centre road, Ms Lavelle was living in constant “fight or flight mode” and felt like she was living on “a conveyor belt system”.

“I think I was really running on adrenalin in the other place because there was nowhere to relax, to just shut down and have quiet time,” she says. She can’t get over the calm of her new neighbourhood, both inside and out. “It’s far more relaxed. And even outside there’s no constant traffic all the time, morning to night. It’s definitely a lot more peaceful,” she says.

Moving wasn’t easy once she finally got the go-ahead. Self-doubt had set in. “Am I making the right choice? Will I be able to manage?” she asked of her care staff in Sligo. Yet she kept going.

They’ve since texted her saying how sad they feel passing the closed curtains of her former room — “but at the end of the day they know I made the right choice,” she says.

“The first few nights were a bit trickier going to sleep.

President Michael D Higgins with Road Safety Association chairwoman Liz O’Donnell lighting a candle in Áras an Uachtaráin during the event in November on World Day of Remembrance for Road Traffic Victims. Picture: Maxwells

“It was my first time sleeping alone in a house in the guts of 10-15 years. That was at the beginning but now it’s grand. I’ve settled in. I have my home alarm system and I don’t need help at night.

“I thought I would because I had been getting help at night time in the home so that was a fear, will I be able to manage when I move out? But it’s been fine,” she says.

It’s gone even better than she hoped. The talented artist is now sleeping a solid nine hours every night.

“In Sligo I can’t remember ever getting nine hours sleep in one go. I was getting on average six hours every night,” she recalls. Another worry was having to get to know all the new care staff, wondering if she’d get along on with them, if they’d handle her routine but it’s all gone very well and the extra care hours have changed her life: “They’re lovely, it’s great. I actually don’t know how I managed on so little [care hours]. Now I don’t know myself. It’s definitely mind over matter.”

“I feel so much more ‘normal’, just having your own space, your own corner, your own time to have friends over. I just can’t even believe how I lived the other way for so long. My family are only 12 minutes away. They can just pop in and out, friends can come and go, it’s just so much better,” she says.

'It’s brilliant to have her back'

Almost on cue, the doorbell rings. It’s her father Pat with a gift of a bacon and chicken dinner carefully wrapped in foil. She doesn’t need it but the offer is touching. “There’s dinner there will you eat it? Arrah have another biteen, you’re getting thin,” he tells her gently, full of fatherly concern.

“It’s brilliant to have her back, it’s unbelievable,” he says. “Call me Pat. Or Pádraighín for short,” he chuckles.

Pat had a stroke four or five years ago which prevented him from driving to visit his daughter while she was in Sligo. But he can now happily manage the short drive along the back roads to her new home, especially since she’s on the “right side of town”.

“She’s a great little womaneen. I was always proud of this lady,” he beams with obvious pride. “She never caused us problems, good at school and everything. She was a great little farmer and everything. It’s great to have her back in Castlebar. It’s been rough,” he adds in an aside. “She’s still plenty far away from us though,” he adds with a merry wink.

He’s very excited about having Geraldine over for Christmas dinner, her first at home in 15 years.

“We’ll just get a size bigger turkey that’s all. An extra leg. You’ll be handy for the cooking. We’ll get a job for you!” he laughs. He jumps up to leave, winces at a pain in his leg then quickly stops himself — “mustn’t complain” — and he’s gone in a flurry of goodbyes and promises of more calls and dinners. 

In October, Health Correspondent Niamh Griffin, Special Correspondent Mick Clifford, and reporters Sorcha Crowley and Ann Murphy heard the voices of people affected by the care crisis, including Geraldine Lavelle. You can read the full series of articles online here or on the 'Irish Examiner' ePaper.

The 'Irish Examiner' is given a tour of the specially-adapted bungalow and all its smart technology which controls access to her front and rear sensored doors, blinds, lights, and heating. Friends are helping the University of Galway neuroscience graduate set up the smart tech that allows her control her front door from her bed.

“It’s amazing what you can do, once it’s set up.

“Friends have helped me too. In one way, I didn’t need that much [for independent living] except the doors — they were expensive because they’re sensored. I wouldn’t be able to pull them open because they’re so heavy — but they make it sound like you’d need so much more to live independently — not really. Just living space and accessible bathroom, just access to things and ramps obviously in and out.

“I can’t believe I fitted everything into one room. Before, it was all shoved into a bathroom, now it’s all clearly organised and labelled. Now instead of everything being cramped in one small spot, it’s all in places I can actually use them and don’t need to ask for help,” she says.

It’s been a busy end of year. In November, Geraldine was awarded a certificate by President Michael D Higgins at a day of remembrance for road traffic victims in Áras an Uachtaráin. She also presented him with a painting of her own. “I know it looks like I wasn’t a lucky one but at least I’m still alive. It was a lovely day, a great honour,” she added.

Ms Lavelle’s biggest goal of the new year — apart from a “lovely summer holiday” — is to return to the workforce, along with publishing her second book.

“I’d definitely like to enter the workforce for sure. Just even to get out, meet people, have a day-to-day routine. That’s not about just surviving, it’s about living and being part of a group, part of something. I haven’t given up on the second book, it’s just a way to word it.

Geraldine Lavelle's plans for the new year include returning to the workforce, writing her second book — and a ‘lovely summer holiday’. Picture: Karen Cox

“It’s about perseverance, that’s the element of my book I want to promote to people. It’s a good motivator. Even for my nieces and nephews, to see auntie Gerry has a disability but she can live independently, hopefully she’ll have a job, she has a normal life to everyone else despite her disability,” she says brightly.

Her positive outlook and determination comes from her mother Margaret who “never allows herself to complain.” Growing up, the Lavelle family “just got on with it”. Geraldine is determined to stay positive. “I don’t like negative energy because you just get sucked into a whirlwind that’s downhill. I’m strong, I’m a young person, I know I have a disability but there’s a lot worse off. Look at all you can do with technology, there’s no excuse not to get work and there’s no excuse not to live on your own. It’s just about things being more accessible,” she adds.

She shudders when she thinks of how close she often came to giving up. “There were so many times I was planning on giving up because the hassle was just unbelievable. I’m sure there are loads who may have just lost the will or the fight to try and get out,” she tells us.

“Keep going and keep trying. It might seem difficult and impossible some days but it is 100% worth it when you finally get your own home. Just keep trying.”