After yet another fit of laughter – this time, about how getting a catheter allows one to put Freud’s theory of envy between the sexes finally to the test – Veronica Steele sighs, like she has suddenly remembered something.
“I’ll stop being able to smile,” she says, as a thin but determined crease plays around her lips.
“Even now, when I’m tired, only one side can smile and only one eye crinkles, which is odd.
“But again, I remind myself: ‘Just be.’ And I keep looking in the mirror and smiling.”
Those two words, ‘just be’, came to Veronica on a card from an artist friend, bold red letters on a hot pink card, as she spent a month recuperating in St James’ Hospital after an emergency tracheotomy last spring.
Just a few months before she had travelled to Ethiopia to share her cheesemaking skills, just like she did with her fellow farm women in West Cork in the 1970s, after starting Milleens Cheese with a one-horned cow called Brisket – striking the match that reignited a renaissance in Irish food and she the flaxen-haired trail blazer.
Now she was lying in a hospital bed, confronting one of the first real stages of multiple system atrophy (MSA)– a rare, degenerative neurological condition for which there is no treatment and no cure.
“But it was what I needed that day,” Veronica says. “Stop thinking about it. Just be.”
The card sits on her bedroom windowsill so it’s the first thing the 66-year-old sees when she wakes at the home just outside Eyeries she shares with her husband, Norman. They met in UCC when Veronica, then a philosophy student, attended his guest lecture on Ludwig Wittgenstein.
A running joke is that she was the only person there who wasn’t wearing a nun’s habit or a dog collar.
“I said to him: ‘Will you smoke a Major?’” recalls Veronica. “And he said: ‘No. I only smoke Gold Flake.’ You could say that cigarettes brought us together.”
“Actually, it was her sense of humour,” counters Norman, as he searches through a stack of philosophy books – Wittgenstein, the unlikely matchmaker included – in their summer-lit sunroom.
It quickly becomes clear that Veronica’s spark, or spirit, has never been stronger, despite being dealt a diagnosis that few of us could contemplate coping with, which she compares with Alzheimer’s in reverse, where her mind will remain alert while her body slowly, but steadily shuts down due to the degeneration (atrophy) of nerve cells in the brain.
She is sharing her story to raise awareness about the little-known disease, thought to affect just five people in every 100,000, but her broader message about living with MSA – or as she defines it “living with dying”– is unexpectedly uplifting.
While Veronica was not diagnosed with MSA until January 2013, in retrospect she believes the first symptoms manifested in 2007.
“I kept having funny dreams and falling out of bed,” she recalls. “But you don’t go to the doctor when you fall out of bed, do you?
“Or you’d be on the trampoline and you’d have an accident, but when you’d go to the supermarket you’d see the shelves lined with pads, so you just thought it was a normal part of getting older.
“I never imagined it was my autonomic nervous system giving up.”
However, she did seek medical advice when she began to experience shortness of breath, which at night would manifest as a “terrible whistling noise,” so severe that while staying at a friend’s house on one occasion, Veronica slept in the attic while Norman bunkered down in the basement.
Initially written off as snoring (one doctor glibly recommended that a pair of earplugs for Norman should solve the problem), it persisted unsolved until an ear, nose and throat specialist was able to attribute it to paralysis of the vocal chords, which eventually led to the discovery that it was, in fact, MSA.
“Well, they come and sit by the bed and look very sad with a big, long face,” says Veronica of receiving the diagnosis.
“One of the symptoms of MSA is emotional incontinence, which means you laugh a lot and you cry a lot, so that’s an excellent symptom.
“So if someone comes along and tells you you’re going to die of this horrible disease, slowly, you go...” she breaks, then bursts into a deliciously throaty “ha-ha-ha”.
“I seem to have developed this symptom as well,” says Norman, raising a smile. “So we laugh and cry together.”
Not that the reality didn’t sink in. She discovered that a UK- based specialist didn’t agree with tracheotomies for MSA patients on the grounds that the procedure would only “prolong the agony”.
“So I thought: ‘I’d rather die than have a tracheotomy.’ But no, not true,” she says, lifting a bib around her neck to reveal a beautifully crafted silver tracheotomy collar that she had designed by a jeweller in Kenmare after her operation last March.
Don’t give in
The silver collar is almost symbolic of how Veronica has chosen to deal with her diagnosis. While she can’t control MSA, she can call the shots on how to cope with, or even challenge it.
When her handwriting started to become inscrutable? She took up calligraphy.
“I practised doing big writing and now I can sign cheques no problem,” says Veronica. “The response to it is not to give in. Your handwriting is going? Work on it. You don’t just sit back and let it happen.”
If a picture paints a thousand words, it has never been more appropriate than in Veronica’s case. In the corner of the room is vibrant artwork, a dazzling sun suspended between sand, sea and violet sky. It commands attention. Veronica first started it 35 years ago, before cheesemaking took over. When she was diagnosed with MSA, she became determined to finish it, training herself to paint with her left hand when the right lost its strength.
“All the kids loved it, so I decided I’d do one each and then I decided to do 10 portraits for the grandchildren,” she says, revealing a current work in progress of her granddaughter, Jasmine, in a white dress, wielding a wand, blonde curls flying.
Travel has also become a passion. Joking that being diagnosed with MSA at 65 was actually perfect timing, as her modest pension was just maturing, she has embarked on adventures with her children, including a train journey across America from Chicago to LA, a river cruise down the Danube and a trip to Vienna, where she went to a Mozart concert, ate hazelnut torte and zipped across the border to a Slovakian spa.
“I sat on a stool and played a piano in Beethoven’s favourite spa in Piestany,” she says. “I went there to drink the water, it’s sulphuric so it stinks, but I drank it all day long and it did me good.”
Next stop on her agenda? Japan.
“Years ago somebody sent a farmer with 10 cows from the island of Hokkaido here and I showed him how to make cheese and now I believe there’s over 40 or 50 cheesemakers on Hokkaido,” she says. “And I’d like to see the cherry blossoms.”
“What’s with the cherry blossoms?” Norman raises an eyebrow.
“Hey, I’m the one that’s dying around here,” Veronica protests in mock indignation. “And I want to see cherry blossoms.”
Veronica does not shy away from the reality of her condition. While her stance remains regal, her limbs no longer lend to hitting the road in her beloved camper-van or trampoline tumbles. Little things she did last week with relative ease are a struggle today.
Following on from the tracheotomy, she recently had a catheter fitted (hence the earlier giggles about putting Freud’s theory of anatomical envy to the test.)
Further interventions will be necessary as MSA tightens its grip on other functions.
“Walking, walking with help, wheelchair, bed, dead,” Veronica answers in her straightforward way when asked what her prognosis is.
“Different parts of the brain are hit at different times. But I avoid the stick very carefully and I’m avoiding wheelchairs because the bed is next. I suppose if you don’t use it, you lose it. So I never stop talking, for example.
“But if I’m having miserable thoughts, I’m usually on the broad of my back and the way to cure it is to sit up. It’s as simple as that, I find. Something to do with blood circulation. But it’s terrifying the prospect of not being able to sit up,” she says, before adding, like a CEO issuing a memo. “Keep me sitting up Norman.”
“Why do you think we have a bed that goes this way, that way, practically turns into a sandwich toaster?” he laughs.
“Well the prospect is I won’t be able to press the button,” she responds, as an almost imperceptible ache infiltrates the room, if just for a split second, then dissipates. Of course there are times when she and Norman just “break down and cry.”
“But I think Norman is actually suffering more than me from MSA,” she says. “I think you could say that without a doubt.”
“My parents lived until they were in to their 90s and it suddenly made me feel old,” he nods.
“The inexorability of the disease is such that you don’t have the positive outlook. One just needs to put up with it and one does, but it does take over both of our lives completely.”
However, the support of friends and family – especially children Susan, Jenny, Kate and Quinlan – has been immeasurable. Quinlan has now taken on the Milleens’ mantle, while Susan is chair of the Sea Fisheries Protection Authority, Kate is a court stenographer in the States and Jenny runs a multimillion food business, The Pure Package, in London, which like her mother, she started at her kitchen sink.
“They’re all very loving,” says Veronica, lighting up at once. “I’m very lucky.”
Veronica has also found solace and support amongst a community of MSA patients she has met online, as well as the MSA Trust in London, which has a specialist nurse who liaises regularly with the family.
“It’s really important not to put your head down,” says Veronica. “You need expert help when you’re dying and good drugs that work, especially if you’re ‘locked in’.”
This prospect of being ‘locked in’ loomed large after her initial diagnosis, but she no longer dwells on it.
In true Veronica style, the fact that her mind will remain resolute while other parts of her body may fail offers a certain fascination to the former student of philosophy and logic.
“It’s a fantastic opportunity to check out Descartes: ‘I think, therefore I am’,” she says wryly.
“But you start to believe essentially in your soul because you’re locked in at the end of this story; if you get to the final chapter. You become very conscious that your body and your mind are very separate, your consciousness is still there. That’s very interesting.
“It’s that ‘sense of self’ that disappears only when you go under a general aesthetic and that’s the bit that is not getting destroyed. In fact, it seems to be getting stronger.”
It’s not the only thing. Never has time with loved ones been more precious, strawberries and cream more delicious; and even frittering hours away playing Candy Crush more decadent.
“When I wake up in the morning, ‘Oh!’ I think, ‘I’ll just see if I have any new lives?’” Veronica deadpans, before erupting once again into that infectious laugh.
“But you know,” she says simply, once she recovers. “Everything you do gets better really. Everything ... gets sweeter.”
She smiles. Just be.