An award-winning writer faces terminal illness by pursuing beauty

Brian Brett is a self-proclaimed rural renegade and an eloquent, award-winning writer. His memoir Trauma Farm, about his life on Salt Spring Island, B.C., won the 2009 Writers Trust Prize for nonfiction.

Brett was born with a rare genetic condition called Kallmann Syndrome, which left him biologically androgynous, unable to produce male hormones, and led a doctor to declare that he wouldn't live past the age of 40.

He far outlived that prediction, but four years ago, he had to sell his farm because his health deteriorated. A combination of an opportunistic hospital infection, a heart condition and cancer meant he needed to live in Vancouver, where he had better access to specialized care. 

I decided that if I was going to die ... then I would like to be surrounded by beauty.- Brian Brett

When his doctors told him his diseases were terminal, he wrote about it in a moving piece for The Tyee called "If Your Doctor Said This Was Your Last Spring, What Would You Do?"

• Listen to Brian Brett talk about his life as the other

Brett spoke to The Sunday Edition's host Michael Enright about his health and dreams for the future. 

Here is part of their conversation. 

Michael Enright: How are you doing? How are you feeling?

Brian Brett: Not very well. They've extended my death sentence since that article for another year. But you've got to remember, with me and my previous history, this has been going on for a long time. They actually diagnosed me at the age of 20 and they told me all the horrors I would have to go through. I came and asked, 'what does this mean for my lifespan?', and that the doctor said, 'your kind has no history of living beyond 40 years'. So I've been getting this death sentence for 50 years now.

You're getting treatment and medication?

I have to go through all that and of course the medication half the time is worse than the disease. But I am in pretty rough shape. I have less than 40 percent of my heart functioning and no visible liver according to the liver specialist. It's completely covered with scar tissue. They don't even know how my liver is functioning.

How does that affect your energy and your day-to-day?

Bad. That's the problem for me because I still have the mind of a 19-year-old, but my body is going slow. Since I've been alone for days at a time, just working and trying to finish these last two books, I've realised that I'm probably going to need a caregiver when I come home. I can do everything, but I'm just so slow that nothing gets done right.

One of my great sorrows is that I have trouble reading now.- Brian Brett

So you're under pressure to finish the book? I hate the use of the word, but you're facing a real deadline?

The problem is I still don't know when it is with my condition or what's going on. I have a remarkable ability to survive, that's for sure. After two months in the heart ward the doctor came up to me and said, 'all your doctors had a meeting and came to the consensus that you're incurable and unkillable. So we're letting you go home.' 

I think every one of us has imagined what it would be like to hear those words that speak about the end. How did you respond to those words?

It's an interesting world. I'd like to write about it one day, about the doctor-patient relationship issue. One doctor cried when he was telling me I was dying of liver cancer. I got this miraculous operation that got me through that about three or four years ago, but other doctors react differently.

It's always on your mind and I find that one of my great sorrows is that I have trouble reading now. I'm very slow. I used to read a book or two a day. I had a huge mind for books, love the adventure of reading and still do. But I'm just so slow, and so that's very depressing.

Do you find you're taking on projects with a greater focus?

A greater intensity. The problem is that I could last another 20 years and I have this sort of remarkable ability to survive all these death sentences. It's incredible. I'm now calling this my 'last farewell' tour of Toronto. They're getting sick of it, I've already had two farewell tours.

• How Brian Brett faces mortality

I want to talk about this remarkable essay. It's entitled, "If Your Doctor Said This Was Your Last Spring, What Would You Do?" What did you do? 

I decided that if I was going to die, if this guy was really right this time, then I would like to be surrounded by beauty. I had taken to buying orchids so that I had a couple of orchids on each side of my bed so that when I shut my eyes at night the last thing I will see will be a beautiful orchid. But then I got really carried away. That's when I got into trouble.

You got yourself a pair of pruning shears? You'd go out at night? 

I'd take a walk in the day. I would go out and sort of check everything out and memorize where I wanted to go and then I could I would go out at dusk, because it has to be light to be able to see what you're doing. I only went after stuff that overhang the fences. 

I called it 'vigilante pruning' ... I would go out and clean up the trees and I would take my wages in flowers. 

• Why Brian Brett surrounded himself with flowers after his diagnosis

You talk in the essay about remembering how many shades of blue there are. Why blue?

When I was a child discovering the world it was all so bright and amazing. I get obsessions, and one of the obsessions was trying to count how many blues I could remember. I got myself up to two hundred and eighty seven before I scrawled it on the back of my dresser in my bedroom so that I would remember it forever. You know, this is the kind of thing you think when you're in Grade 6. 

Can you connect for me the nighttime forays into flower land and your health?

I think it's just the rage to live. I want to die the way I've lived, which is more or less at full speed.

This Q&A has been edited for length and clarity. Click 'listen' above to hear the full interview.