Bernie Doesn’t Just Shake! Parkinson’s Disease & ArtFebruary 17, 2017
In April this year the Garvan Institute of Medical Research in Sydney hosted an unusual exhibition called Bernie doesn’t just shake! It was a four-day event, launched by an evening function that included speakers from many different walks of life – the majority were sufferers from Parkinson’s disease.
The star of the show was Bernie McGrath, a former commercial real estate agent who was given deep brain stimulation (DBS) to alleviate severe movement problems associated with Parkinson’s. What nobody suspected was that Bernie would enter the operating theatre as a real estate and emerge as an artist. Shortly after the procedure Bernie began experimenting with art materials, and discovered a passion for painting. Now he is a professional artist, working compulsively in a range of abstract expressionist styles. He may use brushes and palette knives, or simply pour paint onto the canvas. Making a massive leap from amateur to avant-garde he has even used a garden hose and a blowtorch.
The foyer of the Garvan was turned into a showcase for Bernie’s brilliantly coloured paintings. In the centre of the floor was an installation of wobbly dolls, each a miniature Bernie, dressed in a Hawaiian shirt. The dolls were for sale, raising money for a new initiative called It’s Not Funny, which aims to encourage a more positive approach to Parkinson’s.
It’s Not Funny was founded by John Peplow, a marketing specialist recently diagnosed with the disease, who argues that Parkinson’s can be viewed as a kind of awakening. Peplow likes to quote leading neurologist, Professor Anthony Cooper, who says that if you’re going to have an incurable, chronic disease, Parkinson’s is the most interesting one to have.
“They say that intellectual people get Parkinsons,” Peplow explains. “Because it’s so diverse and takes such a long time to evolve, your thinking gradually changes. You don’t panic – you start rearranging your point of view. You evolve as a thinking person instead of going the other way. For instance, if you’re about to retire from a job you could be closing your mind, but Parkinsons stimulates a new self-awareness.”
There are many myths and preconceptions associated with a disease which is essentially a disorder of the central nervous system brought about by the death of cells in a part of the brain called the substantia nigra. This leads to a lack of dopamine, an important organic chemical that helps nerve cells send signals to each other. Restoring dopamine is an obvious first treatment but there is no textbook way of fighting the disease because it affects everyone differently. It’s commonly believed that Parkinson’s sufferers shake uncontrollably, but they might just as easily stiffen up. The illness might develop quickly or slowly, with sleep and mood disorders. The symptoms are as individual as the sufferers.
In the world today there are an estimated 10 million people living with Parkinson’s, including 70,000 in Australia. It’s often seen as a disease of old age, but one may harbour the condition for many years before it is diagnosed.
Famous Parkinson’s sufferers include Muhammad Ali, Pope John Paul II, Billy Connolly and Johnny Cash. It’s widely believed that Adolf Hitler had the disease, judging by the way he carries his right arm in newsreels.
Having become aware of a number of prominent Australian artists with Parkinson’s, I’d originally hoped to talk about the way they’ve responded to the condition, but there is still a good deal of stigma attached to the diagnosis, and perhaps some concern that it will induce viewers to take a perjorative view of an artist’s work. One has to respect the choices an individual makes in relation to their own life and career, so I haven’t forced the issue.
Bernie McGrath’s case could not be more different. Having entered the art game late in life when his condition was already well advanced, he feels he has nothing to lose. On the contrary, he says: “If you don’t have a positive outlook it will drag you down… I think you need some sort of stimulus to keep depression at bay.”
Bernie doesn’t treat art merely as a hobby. It’s an all-encompassing preoccupation. “It’s a weird thing to say,” he admits, “but if it wasn’t for Parkinson’s disease I wouldn’t be painting, which I love!”
John Peplow says it’s suprising how many people say similar things. He has now heard many sufferers announce: “If it wasn’t for Parkinson’s I wouldn’t be doing the things I’ve always wanted to do.” It’s led him to identify two types of people with Parkinson’s: one type that denies it, and another that embraces it. He admits that this distinction only sets in after an initial period of shock and anxiety.
“You’re confronted by your mortality, and the prospect that you’re not going to be able to do the things you’ve always been able to do. You start to worry about a gradual lack of control, a loss of your sense of dignity and purpose. The first thing you have to do is come to terms with those fears.”
In such a predicament it’s understandable that sufferers become secretive about the disease and try to maintain normal patterns of life for as long as possible. Yet there is a minority that feels you’ve got to own it and talk about it almost straight away.
The down-side was so obvious Peplow decided to look for up-sides.”Parkinson’s gets you straight,” he concluded. “It tells you there’s no time for bullshit. You have to focus on what counts.”
“As you become more familiar with the illness you realise there are a lot of unknowns. Because Parkinson’s affects every part of who you are, it’s like putting in a cheap battery. You never know what’s going to happen next. It’s not going to power up the right things at the right time.
“Parkinson’s highlights your personal peculiarities. If you’re a late night person you’ll become more late night. If you like listening to music you’ll want to listen to more music. It’s an odd thing. Bernie was a gentle giant beforehand, and now he’s more of a gentle giant.”
“When we started It’s Not Funny we set out to film and photograph characters that were living well in respect to the illness. Bernie came up as a great example of someone who didn’t worry too much, and just got on with enjoying life. Before his illness he was a very good, very rare, real estate agent because he was honest and trustworthy. He had ideals and morals, and was vocal in the battle against Westfield taking business away from Oxford Street.”
All Bernie needed in order to reinvent himself as a painter was a bit of canvas and paint, and a good glass of wine. Soon, in his limited movement capacity, he was throwing paint around, and from that point has never looked back. As Peplow describes it: “Bernie lived out in the country so he could turn the music up full blast and do what a lot of people are afraid to do – he just let go.”
The impression one takes away from Bernie’s self-reinvention is that we may all have some other person locked away inside us, knocking on the door trying to get out. Bernie’s creative impulse was sparked into action by Deep Brain Stimulation, but it must have been there all along. It’s a story that raises intriguing questions about the biological roots of creativity.
It’s important to see that for Bernie art is used as a vehicle, not as therapy. One should think of him as an Action painter, in the manner of Jackson Pollock, who uses colour with dazzling boldness and sees the process of painting as no less important than the finished product. But where Pollock’s work is distinguished by its complex dance-like rhythms, Bernie puts on the paint in a disjointed, haphazard manner, as determined by the limitations of his illness. He is “expressing” Parkinson’s in a remarkably direct fashion, responding to the dictates of the disease, but also battling against them.
This is very different from ‘therapy’, defined in the dictionary as a treatment intended to relieve or heal a disorder. In practise, therapy often becomes a way of passing the time for people afflicted with a condition for which there is no cure. Only on rare occasions does anyone begin making art as a therapy and find a true vocation.
While there is undeniably a therapeutic aspect to Bernie’s painting he doesn’t see it as a holding operation that keeps him from dwelling on his condition. Painting is now the driving force of his life, an essential, non-verbal way of expressing his feelings. This kind of focus owes a debt to Parkinson’s, which has enabled him to put aside those things now deemed less important.
One theory is that Parkinson’s helps the sufferer build an entirely new persona. Peplow discusses another It’s Not Funny participant who works as an actor but has begun to see his everyday life in terms of the creation of a character. “One of the reasons you’ll come across a lot of Parkinson’s sufferers who are a little larger-than-life,” says Peplow, “is because they’ve constructed a new persona for themselves. They’re constantly engaged in creating an alternative structure.”
This may be one outcome of having a slow-acting, chronic disease, rather than a purely psychological condition. While neuroses, phobias and anxieties can be eased and cured, there is no escape as yet from Parkinson’s gradual decline, which takes the sufferer in only one direction. The trick is to proceed as if that direction represents progress rather than deterioration. The potential health benefits may be analysed in connection with evolving theories of “neuroplasticity”, which argue that brain cells can be revived by undertaking activities that stimulate thought and problem-solving.
If I were asked to take a purely professional approach to Bernie’s work and judge its value as art, I’d have to say that it’s so varied in style it’s difficult to reach any overarching conclusions. His pictures are raw and confronting, although the rawness has more than a hint of chaos. If there’s an underlying structure to Bernie’s expressive paintings it follows the rhythms of the artist’s central nervous system. It’s not the product of a serene, calculating intelligence.
Bernie’s paintings are Dionysian in the truest sense – expressions of the emotions, unfettered by Apollonian craftsmanship. They are influenced by a pathology but demand to be judged on purely aesthetic terms. If we can only surrender to the experience they have the power to strike a note within the mysterious depths of our own minds.
John McDonald is art critic for the Sydney Morning Herald & film critic for the Australian Financial Review.