Queer couple on life with terminal brain cancer – and turning pain into art
When Gordon Shaw was diagnosed with a brain tumour 10 years ago, it plunged his life into uncertainty and fear.
Overnight, everything changed. Gordon’s cancer is terminal, something he is aware of every second of every day.
It was shortly after he received his diagnosis in 2012 that Gordon started exploring his experience through the comic book format. At first, the focus was very much on what it was like for his loved ones – that all changed following some incisive criticism from a friend. He channelled his pain into art, and over the last decade he’s turned his tumour into an antagonistic and cruel comic-book character named Rick.
“My friend who helped me create Rick, he was very, very drunk one night and he said, ‘The comics are very good, you’re doing very well, but you’re not really speaking about yourself here, Gordon. You may not actually reach yourself before you die.’ So it wasn’t a good report,” Gordon tells PinkNews.
The next day, that friend texted Gordon and apologised for what he’d said – but it actually ended up being a good thing. It inspired Gordon to go deeper into himself and to explore his own experience in a more meaningful way. That led him to Bittersweet, the comic that explores his feelings of guilt, shame and sadness about his own diagnosis.
All of this and more is explored in the emotionally bracing documentary Long Live My Happy Head. It’s film about the realities of cancer and the power of art, but it’s also a bracing film about the resilience of love – even in the face of a global pandemic.
Gordon met Shawn Puller, an arts administrator from Virginia in the United States, in 2017. Their relationship has flourished ever since – but it hasn’t always been easy.
Long Live My Happy Head follows both Gordon and Shawn as they go through the process of accepting that he isn’t going to get better. By now, Gordon says he’s “used to” living with the brain tumour. There’s never a moment when he’s not aware that he has a tumour – he can pinpoint just one moment over the last 10 years when he briefly forgot, only to be reminded seconds later of his daily reality. It’s been different for Shawn, as is always the case – loved ones experience cancer in different ways to those with the illness.
“I think others outside of him have to struggle with the reality that there will be a point where we continue on without Gordon, and Gordon has to come to terms with his death. We all have to come to terms with living after that,” Shawn says.
In the early days of the pandemic, when international travel was an impossibility, Gordon and Shawn were separated by the Atlantic ocean.
They’re are no longer living apart – a few months ago, Shawn travelled over from the United States to be with Gordon. During his trip, doctors discovered Gordon had a second tumour.
“When I came over in September it was for the next round of scans and follow up medical appointments, and it was then that we learned the tumour not only was not responsive to the chemotherapy that we had tried again, but worse yet, a second tumour had cloned itself and was aggressively growing,” Shawn says. “In order to preserve Gordon’s life for as long as possible with quality they were recommending surgery as soon as we could arrange it.”
Gordon’s second tumour was operated on successfully in November, but it was a difficult procedure. He recovered well, but it hasn’t changed the overall prognosis. The original tumour, the one Gordon named Rick, is still there. There’s no way of removing it because it’s buried too deep in his brain.
“It’s inaccessible without lobotomising him, so they still have the bulk of the tumour that’s unresponsive to chemo,” Shawn explains. “They don’t have anything left to throw at it.”
When Gordon and Shawn spoke to PinkNews, they were isolating together in Leith, Scotland.
Shawn runs a chamber music centre back in Virginia but he’s been facilitated to stay in Scotland to be with Gordon and has applied for permission to remain in the UK on humanitarian grounds.
After two years of dodging COVID-19, they finally contracted the virus. That meant they were unable to attend the premiere of the film at BFI Flare in London. It’s a sore subject for the couple, although they’re grateful they had the opportunity to see it in full at a private screening for family and friends in Edinburgh last October, specially arranged because of Gordon’s health, and attended by family and friends.
Viewing the completed documentary was painful for Gordon and Shawn. Together, they watched as some of the most traumatic moments of their lives were replayed before their eyes. For Shawn, it was devastating to have a glimpse into what it was like for Gordon to live in total isolation in Leith during lockdown.
“When I start talking about it, it clutches at my throat,” Shawn says. “Watching him in isolation was traumatic, and it brings back instantly the frustration and the fear of the pandemic and not being able to come and be with him… To just feel the weight of his isolation, it haunts me. He had to live that alone.”
Part of the reason Gordon wanted to share his story in his comic, and in the subsequent documentary, is because he wants to raise awareness about brain tumours. They’re notoriously hard to treat – more research is needed to improve outcomes for people like Gordon.
“While there are lots of medicines available that target cancers, there are not a lot of medicines that can be delivered into the brain itself, making treatment almost impossible. The brain is very protected,” Shawn explains.
“It’s the biggest cancer killer for people under the age of 40, and yet, very little is known about it and very little research is done by comparison to other cancers.”
“It’s horrendous,” Gordon says. “My mum died of breast cancer back in the ‘80s. With breast cancer, they took action.”
Despite this, progress has remained slow when it comes to brain tumours. They both hope Long Live My Happy Head can put a spotlight on the issue so that one day, others won’t have to face what they’ve had to endure.
Long Live My Happy Head is streaming on the BBC iPlayer now.