Fraser paints with his eyes
In May 2022, Fraser Holden was given a devastating diagnosis. He was told he had motor neurone disease (MND), a fatal neurological condition where motor nerves in the spine and brain slowly lose function. There is no cure and sufferers eventually can no longer move or speak. It is a cruel condition.
Not long after the 53-year-old Australian was diagnosed, he was given Eye Gaze, a piece of machinery which is attached to a laptop. These devices capture eye movements and give people with MND — and other locked-in diagnoses — the opportunity to communicate, use the internet, operate a TV, and control lighting or music.
But for Fraser, it instantly became a way for him to live his life-long dream: to be a full-time artist.
It is fitting. Before he fell ill, Fraser, an amusing and amused man, had always been excessively creative. An architect by day, he spent his spare time making electronic music, painting and creating striking graphic designs. He'd written and illustrated a children's book about a little girl giving up her dummy.
Orlagh and Fraser. The photo was taken by Sharon who is @placesnspacesphoto
The once chatty and friendly Fraser can no longer speak or move so I am hearing about his world through Orlagh, his incredible wife and a dear friend of mine who lives in Dublin. She explains they were initially told the Eye Gaze software would help him communicate—he would use his eyes to type words. “But because Fraser is so creative, he took the Eye Gaze and quickly downloaded what he needed to create art,” she says.
Amazed at what her husband was doing, Orlagh posted the works on social media. As she puts it: “Some of the art is really uplifting and motivating, and then some of it is really dark.” Soon, people soon began asking if they could buy them. At last count, 25 pieces have been shipped across Ireland and around the world — Sydney, Birmingham, London and New York.
No longer able to work, Fraser now spends his days “drawing” and is — incredibly— also doing a course at a music production college.
“It’s amazing that Fraser has been told — like we’re all going to die — but Fraser has been told, ok, your life is shorter than most. But in that, he's managed to actually pursue his dreams,” she says.
While their lives have been completely upended and his terminal diagnosis stares at them daily, Orlagh has chosen to grab this situation and shake the best out of it. It’s extraordinary what the couple have been up to.
They have raised around 55,000 Euros for motor neurone disease research. They put on a fundraising exhibition of black and white art, which included several works Fraser painted before he lost the ability to move. The couple featured in “Inside the Hospice”, a three-part documentary on Irish TV highlighting the positives and wonders of hospice care. Orlagh has appeared on various programs talking about the disease and has also started giving talks on the power of having a positive mindset when life takes a shocking turn.
She regularly posts stories of herself jogging — reminding us all to move while we can. She posts frank updates on Fraser’s health— she was recently given a machine to use when he starts to choke. She recently did a shout-out to get tickets to a sold out Depeche Mode concert. Sure enough they got tickets to see Fraser's favourite band. "I keep saying step outside your comfort zone and amazing things can happen," she says.
Fraser at Depeche Mode in Dublin with his buddies.
Nobody knows what causes MND — around 10 percent of cases are hereditary while the other 90 percent develop randomly. Over 420,000 people are living with the disease worldwide. Fraser’s first inkling that something was wrong was when he had a fall and he thought he had a trapped nerve in his shoulder. After a series of tests, the couple were given the dreaded diagnosis and told he had two to five years of life. Unfortunately, his disease has moved at a much faster pace.
Thankfully, while he can’t move or speak, Fraser will always be able to move his eyes.
Orlagh says the work is going to be a wonderful legacy for their eight-year-old daughter Oonagh. “When Fraser passes, he wants me to do another exhibition and the money raise can go to MND research.”
I tell Orlagh that their situation is both fucking horrible and fucking beautiful.
“That’s exactly what it is. I said to Fraser the other day that we are better people with MND in our lives,” she says. “Fraser is a better person. I’m a better person. For everything it has taken away from us, it's really enhanced our gratitude, our outlook on life, our passion, our love — all those things are more because of MND.”
“I would say it's such a humbling experience. And honestly, I could write you a list as long as my arm about all the things we're grateful for. I don't think I could have done that year and a half ago.”
If you are interested in buying some of Fraser’s work, check it out at black and white movement on Instagram. Fraser is also up for commissions.