“It’s like a dark cloud of loneliness surrounding my life.”
That’s how Jessica Keegan, a 29-year-old woman with cerebral palsy who lives in Limerick City, describes the isolation she has suffered during Covid-19 restrictions.
Jessica endured months of restricted day services that left her battling isolation and boredom for hours each day and has difficulties communicating with masked care staff.
“I’m really, really lonely and sometimes it can become so bad that I am emotionally in pain; I can feel it inside of me,” Jessica says.
“I don’t want to feel like a burden to other people. I use the word ‘sorry’ a lot. The boredom and loneliness makes me end up comfort eating, and there are lots and lots of tears. That happened a lot during Covid: The tears.”
Jessica was born with cerebral palsy. She needs assistance with every aspect of her daily routine, from getting to and from bed, to dressing, and preparing meals. She can’t read unaided due to a visual impairment.
“Cerebral palsy is a physical condition,” she says. “I’m able to talk and I have the same intellect as an able-bodied person, but I can’t put my ideas down on paper.
My inputs are good, but my outputs are damaged.”
She says she struggled to adapt to carers wearing masks, in part due to her vision.
“I hate people wearing masks,” she says. “When I was younger I was really scared at Halloween; I need to be able to see people's faces. It makes me very uneasy when I can’t see who is behind the mask.”
Jessica was born in the UK but moved to Ireland aged seven to live with her father in east Clare. By the time she was 19, their relationship had deteriorated, and she moved to emergency accommodation in Ennis.
Seven years ago, she moved to a ground-floor apartment in Limerick, in HSE accommodation designed for independent living.
But Jessica says her needs are too great for the supports available in independent living accommodation: While Covid-19 exacerbated her loneliness, she says, there are lots of pre- existing problems.
She would like the HSE to act, to move her to accommodation with more built-in supports.
“The staff are only there to cook peoples’ dinner and do laundry and go away again,” she says. “They get me up in the morning, make my tea in the evening, and then they go away for hours and come back and put me to bed at night.
“What I need is assisted living, not independent living,” she says.
Under Covid-19 restrictions, Jessica and other service users were reassured they’d receive the same level of assistance always available in their accommodation, but Jessica says that was untrue.
“They said they were providing the same service that they always do, but they didn’t,” she says. “We had even less contact. There was an atmosphere of fear, especially in the beginning, so no-one would even stand and talk to you.
"They were advised to keep their distance: they wouldn’t chat.
“Because they could see I was upset, they often used the phrase ‘we’re risking our lives’ when they were working with me, and that made me feel like it was my fault,” she says.
“Maybe they were, but they made me feel responsible.”
Jessica’s social life revolves around her week-day visits to Enable Ireland’s day services centre in Quinn’s Cross. Under Covid restrictions, the day centre was closed from March to August, cutting Jessica off from vital contact with others.
Visits to her accommodation were also halted. Jessica relied heavily on phone contact with Enable Ireland staff during those months of isolation.
“I didn’t realise how strong the bond was with the people in Enable Ireland until Covid. I owe so much to them.”
Enable Ireland also loaned Jessica an iPad, which she could use to watch YouTube videos to try to combat the boredom of the many hours each day she spent alone. She also listened to audiobooks.
Although Jessica normally loves the festive season, this year she’s worried that Christmas will exacerbate her feelings of loneliness.
As to 2021, Jessica hopes to see Covid restrictions eased in the new year, but she also wants a longer-term solution to her accommodation problems.
“I hope things will be different with the Covid stuff,” she says. “But mostly, I want to move to new accommodation because I don’t think independence should mean loneliness.”