SOPHIE GRENHAM talks to JULIA KELLY about her writing, coping with her partner’s EARLY-ONSET ALZHEIMERS and how he BECAME THE SUBJECT of her latest book …
When I reflect on the first time I met artist Charlie Whisker, I am immediately transported to his airy, light-filled Sandycove home studio in the summer of 2007. At the time, I was a fledgling journalist compiling a feature about Ireland’s best painters for Social & Personal. Charlie’s contribution to the piece involved a small photo shoot, where we positioned him in front of one of his favourite paintings – of a bare-breasted nun. Between camera clicks, I busied myself by asking about his impressive collection of classic books and vintage toys. My gaze eventually wandered over to the fireplace, where a black and white portrait of a striking young woman with curly blonde hair sat on the mantelpiece.
“That’s my girlfriend, Julia,” Charlie announced, proudly. “She’s written a book, which is coming out soon. You should interview her.”
His “should” felt like more of an instruction than a suggestion, but that was Charlie. I quickly got a sense of bestselling author Julia Kelly’s great love, mentor, second agent and over a decade later, the subject of her latest book – Matchstick Man.
When I meet Julia at her Dalkey apartment with one heck of an oceanic view, I bring my old press cuttings with me. She hasn’t seen my profile on Charlie before; an affectionate smile quickly grows on her face, and she says that he looks handsome. I also show her the interview that we eventually did for the Sunday Independent in 2008, about her debut novel With My Lazy Eye. In her picture, she stands under one of Charlie’s animal skulls, sporting a rare flash of cleavage – rare because she’s not typically a cleavage kind of gal. She chuckles at the image of her younger self, and snaps the shot of Charlie on her phone. She will show it to him later at the nursing home where he now lives.
In April 2014, Charlie was diagnosed with early-onset Alzheimer’s disease, a blow that would eventually unravel him – and their time as a couple. They have a young daughter, Ruby-Mae (9).
When Julia explains the timeline of Charlie’s recent medical history, a piece of the puzzle quickly slots into place. I last saw Charlie in Hodges Figgis, at the launch of Julia’s second novel, The Playground in September 2014. The floor was absolutely jammed with friends, family, journalists and literary PR figures, yet Charlie spotted my face in the crowd and tipped his trilby hat to me from across the room. I waded through the throng and we chatted about what would become his last project: a lift-door for his close friend Bono that his grown-up daughter Domino completed on his behalf. Something seemed off, but I couldn’t quite put my finger on it. In hindsight I know that it was the Alzheimer’s. Charlie just hid his condition well, an ability that would gradually slip away from him, like nearly everything else.
“It’s interesting the people Charlie would remember,” Julia observes, when I recount the story. “There are some very famous people that he wouldn’t recognise. It’s an equalizer, really. There’s a beauty to Alzheimer’s in some ways with Charlie, because he used to be very interested in having a lovely home, a younger girlfriend, and beautiful things around him. Now, everyone has the same status. He sees beauty in the tiniest things.”
Her latest book was originally meant to be about a wedding in Italy. Instead, Julia found herself writing about Charlie, as their predicament consumed most of her waking thoughts. Matchstick Man begins with their first meeting in Annaghmakerrig, the iconic artists’ retreat. On the first night, Charlie rocked up late to the dinner table with Skippy, his prized six foot long pet iguana, tucked under his arm. Before long, the painter and the writer were joined at the hip. Julia certainly got more than she bargained for. She arrived to work on her first novel, and left with a teacher. Charlie regularly produced lists of words for her to use, pages of notes and sometimes harsh advice. The result was her award-winning With My Lazy Eye, anointed by John Banville, who said, “Julia Kelly’s is surely the freshest voice in Irish fiction since the wonderful early novels of Edna O’Brien.”
Of her evolution as an author and Matchstick Man’s creation, Julia says, “Charlie was a mentor from the very beginning. I really depended on him for a long time to tell me that my work was good enough. I leant on him – probably too much. Charlie had no involvement in Matchstick Man, apart from asking me to write it. He’s not able to help. He can’t read anymore. I think halfway through my second book, when he was becoming ill, I realised I need to take flight on my own. It’s a natural progression. Eventually I have to trust my own judgement.”
Julia’s memoir not only covers the course of their relationship, but it recounts Charlie’s earlier years in Northern Ireland. There are many pivotal moments in his life that Julia has preserved on paper for their daughter. One memory in particular seldom strays from Charlie’s mind. In 1974, he witnessed the brutal murder of sixteen-year-old Michael Browne in his home town of Bangor. As he cradled Michael in his arms and waited for the police to arrive, he smoked cigarettes, leaving a trail of butts and matches on the ground. Charlie’s trademark burnt match symbol is a personal reminder of Michael. It appears in most of his paintings, including the stunning images chosen for Matchstick Man’s cover and inside sleeves, and on the pages themselves.
In my opinion, Julia’s new work is a perfect tribute to her life with Charlie. It honours his legacy with a memory box for their daughter, and albeit inadvertently, the story is an education in Alzheimer’s. Among the many lessons learned are key characteristics of the condition, including the intense heightening of senses and the ability to be completely present. There are great pearls of wisdom to be gained from observing a patient.
“Watching Charlie is a lesson in how to live life,” Julia says. “In the moment and with gratitude for even the smallest joys. Alzheimer’s is a return to childhood – it’s a return to innocence. Charlie has this E45 cream in his room, and I rub it on his head each day and he lies back and says “Oh, this is bliss – I’m in heaven!” He’s in a pretty basic room in a nursing home and he’s incredibly grateful to have his head rubbed. All he will eat in the home, all he demands is ice-cream and whiskey, and he’s happy. He gets through whole family packs of Werther’s – he devours them. Alzheimer’s patients are very tactile. They’re hyper sensitive too. If you or I were to get a chest infection, it would be uncomfortable, but with Alzheimer’s it is acutely painful. Everything is heightened, really. I have a nephew who has Autism and it’s quite similar in terms of noise. The sound of plates being stacked in a restaurant or a kid screaming is utterly intolerable to Charlie – same with my nephew.”
It becomes obvious from Julia’s stories just how much love and affection remains for this man, even though they are no longer a couple. Her eyes often light right up and her pitch grows slightly excitable, as recollections of heart-warming incidents occur to her.
“When we visit Charlie, there’s positives, laughter, or something that you take from it. He’s still very funny. He has a big palm tree in his room. The other night he said, ‘This is the most enjoyable thing!’ and he walked really quickly, straight at it, right through the leaves! ‘This feeling, it’s amazing, Julia – you have to try it!’ It’s so amazing – the feeling of the leaves on his face. He’s incredibly proud of this plant in his room.”
While there are plenty of uplifting moments in their daily lives, the circumstances are no less heartbreaking for Ruby-Mae, who has developed a remarkable resilience for someone so young. However, helpful as her inner strength might be, she remains vulnerable to future challenges.
“The average lifespan of someone with Alzheimer’s is seven to ten years, so I’d say Charlie’s eight or nine years now,” says Julia, her tone steady but sad. “Eventually people forget how to swallow or they get an infection, and that’s usually the end. It’s like a freight train coming down the track, and I cannot protect Ruby-Mae from that other big blow. She sees him maybe once a week now, and I have to keep visits very, very brief. She’s nervous about being in the room with him on her own; if I pop to the toilet or to the nurse, she wants to come with me. Charlie and Ruby-Mae are very fond of each other, but they’ve never really known how to relate to each other in any kind of deep way. It’s been just me and Ruby-Mae for a long time, so the thing she really panics about is when I get sick. She hates when I’m upset, if I trip or fall. Kids hate seeing vulnerability in adults, because it makes their world a little bit shakey.”
With everything their daughter has witnessed, Ruby-Mae is gregarious, responsible and well-adjusted; qualities no doubt aided by watching her mother and her female circle move mountains without the visible support of a partner. Nonetheless, she is still hugely dependant on Julia when it comes to bedtime.
“Ruby-Mae moved into my bed at the age of five, and I can’t get her out,” Julia says, bemused. “She’s a real Type A personality. Her schoolwork has to be absolutely perfect, and she’s very good at art – she’s got that from her Dad. She’s very spirited, very confident, very strong in herself. She’s very plucky, which is going to really serve her – thank god she is, because of everything she’s been through. She’s also got a great sense of humour, we have a lot of fun together. She’s quite a winning kid, if I say so myself, but she’s definitely suffering from anxiety. She’s seen one counsellor, but that didn’t go anywhere, so I’m trying again next week. I got Ruby-Mae a brand-new bedroom for her birthday, and the plan was to get her and the dog in there for good and bloody lock the door! But it hasn’t worked – she’s still with me.”
At certain points in her memoir, Julia implies that there was speculation around her relationship with Charlie post-diagnosis, particularly when it came to their separate addresses. Setting the record straight was certainly a more minor motivation behind Matchstick Man.
“I had it said to me twice, that I’d abandoned Charlie when he got sick, and the truth was so utterly different to that,” Julia wearily recalls. “I still see him six times a week and we’re closer than we ever have been. It’s not a romantic love, but it wasn’t really a romantic love beyond Ruby-Mae being a toddler. For a long time I wanted to leave, but I didn’t feel I could, because he was very dependant on me. But yeah, I wanted to put my side of the story across. Everyone in my life has been incredibly supportive and understanding, but there were people in Charlie’s circle. These were people who weren’t visiting him at all, so it annoyed me all the more. If you had been to visit him once, you would have seen the reality.”
The reality is, to put it lightly, cruel. Julia mentions that apparently fifty percent of eighty-year-olds will have Alzheimer’s, that it uses up more money than heart attacks and cancer diagnosis put together. So much about the Irish healthcare system is deeply flawed, with every resource stretched beyond the beyonds – where does all it end? She hadn’t originally intended for this book to have such an educative angle, but she is pleased that I interpreted it that way.
Along with Matchstick Man’s beautifully penned narrative, it’s easily distinguished from many titles on the subject, in that it shows how a child deals with Alzheimer’s. It’s fair to state that their family is unique. Charlie was sixty when Ruby-Mae was born, and most children of Alzheimer’s parents typically face this situation much later in life. What does Julia think readers can ultimately take from her words?
“What I’ve observed with him is that people are scared of Alzheimer’s,” she tells me. “Charlie felt very lonely and very cut-off for a long time and I think that’s a really unfortunate thing. If Charlie had cancer or something that people could better understand…I think some people are still scared of mental illness. So many people – his friends – just dropped off. People with Alzheimer’s thrive on distraction, they need friendship. Their world suddenly becomes incredibly small and lonely and isolated. Anyone in the full of their health would have kicked off in Charlie’s situation, with absolutely nothing to do all day. He can’t watch TV, he can’t read, so he’s just lying in a room with nothing. No exercise, no fresh air, he can’t go outside, stodgy food – nothing. He’s really scared, really confused and wants to be listened to. I had a nurse come to visit and she was just talking over him, asking me all the questions. I think it’s important to see that it’s Charlie and the illness, not Charlie defined by his illness.”
Julia’s next novel, while only in the early planning stages, is about an elderly person dying abroad. Her late mother’s life tragically ended while swimming in the Galapagos islands. It would seem that Julia, like many wordsmiths throughout history, is a fan of immortalising those closest to them. First with Charlie, now her mother – two of the great loves of her life.
“I feel like I’m honouring the person if I put them down on paper, and they’re there forever then,” she says, warmly. “You kind of feel you’ve got some sort of hold over them, when you don’t really anymore.”
Our conversation briefly brings us to Annaghmakerrig, the place that sparked the beginning of an epic journey, to which she has since returned.
“Often when you go back somewhere, it disappoints or it seems not as special, but actually it felt more special than I’d imagined, and also really lonely without Charlie there. The place felt like it was full of ghosts. I was very happy there, but I also wanted to leave, because it was very upsetting to me. I actually just wanted to go and see Charlie, and I’d love to bring him for a walk around the lake. I’ve been trying to arrange that – we will.”
I could listen to Julia talk about Charlie all day. While they will never be what they once were, her loyalty and unfaltering devotion to their friendship shines brightly. As I pack up to leave, she jumps when she remembers that some small children are due at their house shortly, no doubt friends of her daughter. Julia really doesn’t have a second to spare during this crazy period in her life, and all that it continues to throw at her. I hope she will one day find the peace she craves. For now, Julia Kelly is simply doing what most single working mothers do – the best she can – with flying colours.
Matchstick Man (€14.99) is published by Head of Zeus and available from bookshops nationwide. It has been chosen as one of Sinéad and Rick’s Eason’s Must Reads.
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