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Illustration by Alex Siklos
A year ago a specialist in hematology and oncology told me I probably had a rare disease – a cancer of the blood and bone marrow called myelodysplastic syndrome, or MDS. My appointment with this doctor lasted only a few minutes as he stared at a computer and rattled off the highs and lows of blood parts I’d never heard of. My actual diagnosis would come with a bone marrow biopsy a month or so later, which left me time to do some research, or at least try.
Information about MDS is hard to find because the disease is uncommon, and not a subject of general interest, and because it takes many forms. Most of what I found online was either general overview material or overly technical. (My best source of information, found months later, would be a Facebook page for people with the disease. Those folks got down to the nitty gritty.) Still, several worrisome and easy-to-understand tables popped immediately from my computer screen. These tables featured prominently in the articles and websites and suggested I had between a few months and five years to live, depending on the “risk level” of my disease, which I wouldn’t know until the biopsy. There was also a variable but real chance my MDS could evolve into acute leukemia.
Oh boy!
To be honest, after the initial grim shock, I was not alarmed by the diagnosis or even my prognosis, whatever it turned out to be. I have had a good life. I have a wife and adult children who love me and whom I love. I have a wonderful granddaughter. I have a large extended family and a few very good friends. I have seen large chunks of the world and have lived for a time in far-off parts of it. I had an interesting career that helped people and have fulfilling interests and hobbies. In other words, I don’t feel cheated in any way. I feel lucky and thankful.
And bizarrely, there was something vaguely comforting about a short but somewhat predictable timetable.
As I got older, my biggest fear had been a prolonged mental or physical helplessness at the end of life. Some of the brightest people I have known spent their final years confused by dementia, and some of the most active and physically gifted lost the use of their bodies. No one wants either destiny.
A contrary fear was an unexpected death so immediate that I didn’t have a chance to get my affairs in order or say goodbye to the ones I love.
As it turned out, my bone marrow brought glad tidings. My MDS is considered low risk and requires no treatment for now. The affected genes are the least ominous. When my hematologist mentioned the five-year prognosis, he also said that he had patients still going strong after 20 years, one nearly 100 years old. Of course, that could change.
“Could things go south?” I asked
“It’s an unpredictable disease,” he told me.
He described my status as “watch and wait.” It was good news, even if the term was ominous.
I thought of Vladimir and Estragon, waiting endlessly for God knows what.
I thought of a cold and lonely member of Night Watch in Game of Thrones, waiting for the White Walkers to bring certain death.
Still, it was the best diagnosis I could have hoped for. What it means is that, like you, I could live to be 100 or die today, or tomorrow, or a year from now.
I am currently reading the Booker Prize-winning novel Orbital, by Samantha Harvey, which recounts 24 hours in the lives of six astronauts and cosmonauts on the space station. They are aware their lives could end instantly with an unexpected malfunction or a stray meteor. They understand implicitly the fragility of their own lives, and each seems to appreciate life more than ever. One tells experimental mice who are clinging to the bars of their cage in the weightless environment, “Life is short (yours especially). Let go, be bold.” A few days later she finds them drifting through the space of their cage.
I hope in whatever time I have left, be it years, be it months, to be as bold as those mice, even if I someday experience the helplessness I have long feared. Every one of us has a terminal condition. We are all on “watch and wait.” Our lives are short, achingly hard and incredibly beautiful. May I let go, be bold, and experience the mundane and incredible beauty that surrounds us every day.
Peter O’Neil lives in Seattle.
