I was listening to a radio show featuring a veteran of the Iraq war describing how his decision to step out of the Humvee that his best friend was traveling in led to his survival and his friend’s death. He didn’t know why he’d decided to get out. They were in a calm area. The Humvee wasn’t attacked. He chose – for no clear reason – to step out and walk. His friend stayed inside the vehicle. The Humvee drove off. The driver lost control, no-one knows why, and everyone inside died. The inexplicable nature of that moment tortured the vet. That split second decision, made without conscious thought, yet with such massive consequences. One lives, one dies.
Two years ago I decided to do everything possible, and everything impossible, to live.
The veteran who lived couldn’t cope with the hand he’d been dealt. He relived the moment from when he and his friend changed from being as one to being at the literal opposite ends of life’s spectrum. He found himself caught in a seemingly forever freeze-framed state of PTSD, unable to ‘move forward’ as we might say. Eventually he sought solace in communicating with others. He joined an initiative which brings together vets with country music artists, allowing them to express their emotions. But it was in his meetings with his psychiatrist that he found the insight that got him through. He realized he had a choice. To stick with ‘what if?’ or to move to ‘what now?’.
Blindsided by my diagnosis of glioblastoma (GBM), I grabbed every treatment I could get. I switched doctor so I could have more than the Standard of Care, even if unproven. I embraced complementary therapies, adopted the ketogenic diet, fasted twice a week, walked every inch of the park. I couldn’t help but think about GBM all the time. I saw a psychiatrist.
I’ve been reading a fascinating autobiography by Kate Bowler, assistant professor at Duke Divinity School. Kate is an expert in the ‘prosperity gospel’, a branch of Christianity that promises a cure for tragedy. Its bold central claim is that God will give you your heart’s desires, whether that’s a buoyant bank account, or wonderful career. Or healthy life. Kate’s faith has been massively stress-tested since she received a diagnosis of stage 4 cancer. She has just published ‘Everything happens for a reason’. She writes about the contrast in how she viewed her life pre-diagnosis and post: “If I were to invent a sin to describe… how I loved – I would not say it was simply that I didn’t stop to smell the roses… I failed to love what was present and decided to love what was possible instead.
“I must learn to live in ordinary time, but I don’t know how.”
It’s taken me two years to live in ordinary time. It feels good.
Over the next few weeks I will complete two years of chemotherapy, two years of immunotherapy, and nearly two years of wearing the Optune device. I am extraordinarily lucky to have the body of a workhorse, able to withstand all these drugs and more. At the same time, I’ve fed my psyche by focusing on what I can do, rather than what I can’t. I can learn about the disease. I can stare down the dire survival statistics. I can face the challenge that no real progress in treatments has been made since 2005. I can turn these realities into challenges that we will and can overcome. So when I look at the scan of my MRI from last week and I see beautiful strange entrancing squiggles, but no bright alarm cancer lights, I feel the vibrancy of life in the here and now. And when I get up in the morning and think about my day, I find GBM doesn’t pop up as the irritating alarm in the way it did a year ago. GBM will never let me be considered ordinary, but I’m starting to live in ordinary time.
I continue to benefit from constant, real-time infusions of interaction treatment from friends, family, colleagues, others with GBM. I wonder how anyone can ever survive solitary confinement. Because each interaction feeds what is left of my brain with new thoughts, new springboards that help refresh me, keep my internal dialogue alive, and help me find the right path for me today.
In just over two weeks (what is it with the number 2??) the OurBrainBank app goes live. Yes! Can you believe it – it’s really happening and it’s really bloody brilliant! We’ve built a board of outstanding human beings, spanning medical and tech experts to lawyers, marketeers, and people with glioblastoma. Check out my fellow GBM traveler, Adam Hayden, who joined us most recently and who writes like a dream https://wordpress.com/read/blogs/118032889/posts/3592
OurBrainBank is founded on the belief that if you design a treatment for a disease around the person experiencing it, you will have a better chance of meeting need. Our initial tool makes this happen by using uMotif’s brilliant app. I’ll blog as soon as we’re good to go. But the point is that we are hoping – determinedly so – to bring together people like me and Adam who are living with GBM, with people like you, who are anxious about people like us. We want to use our collective power to make it possible for everyone with GBM to live way beyond two years post diagnosis. And to live in ordinary time.
But these are extraordinary times. Technology allows us to connect, collaborate and, we believe, conquer. Charles Darwin was right on the money when he wrote: “It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is most adaptable to change”.
Which leads me to one of my all-time favorite lines from the Bard himself. Coriolanus’ mother says: “Action is eloquence, and the eyes of th’ ignorant more learned than the ears.”
OurBrainBank allows us to monitor and manage the change that GBM provokes in our lives. In so doing, our lives will morph into data, and transform again into medical currency that can fuel research and, ultimately, a cure. That is our long term goal. Capturing our symptoms is gold dust for the learned medics. But Our data is the first step. Unlocking the extraordinary power of patients is the key. People like me and Adam have learnt more about life and death in the last two years than most people will ever get a chance to. We are students of the University of Creativity in the face of Adversity. Our first step is to engage many more people living with GBM and their caregivers. From Day One, I reckon the OurBrainBank app is going to help people like me adapt, to move from supposed ordinary lives to extraordinary, and back to ordinary. To do so smoothly, effectively… and eloquently.
And perhaps to a New Ordinary.