Leading with Joy
"You must be very angry."
This was the (rather leading) question of one of the journalists I spoke during my brief tenure of being a spokesperson for the Health Council of Canada. We'd been discussing the eight months I waited for funding approval for Enbrel, of how the RA ate my life and made me more disabled, to the point that I never regained the ability I had before the flare. And likely never will. The reporter seemed to very much want me to be angry, to hold forth with a blistering indictment of the system, to grieve the loss still.
And I'm not, I didn’t and I don't. I think I may even have looked a little puzzled at them before I answered. Because seven years ago, I thought I was going to die. At this time seven years ago, I thought it might very well be my last Christmas. And seven years ago, I was absorbing everything I could, mentally recording and honouring my life and the people in it because I had begun to say goodbye to the world.
I didn't die. I found a medication that gave me back my life. And sure, it’s taken me seven years to fight back, to get to where I am and sure, I’ll never get back certain abilities, but y’know?
I thought I was going to die. And I didn’t. I thought I was losing my life and instead, I got a second chance.
The reporter tried again, from a slightly different angle and I must've sounded like some blessed-out nincompoop, because there was a smile on my face and my answer kept being "I thought I was going to die and I didn't." Eventually, they gave up but I could tell from the expression on their face that they didn't understand.
There are things I cannot do anymore, things I used to love and would love to be able to do still. Using my manual wheelchair and popping into a friend's car for a road trip. Packing a suitcase, grabbing my passport and taking a plane to another country. Getting through a day without having to lie down for a couple of hours in the afternoon. And so on. I will happily offer myself up as a poster child for a campaign to reduce the wait times for funding to medication, would share my story everywhere if it could help protect others from losing ability and health. But I have no intention whatsoever to devote my life to regret.
I could wallow in what ifs, look at what I don't have, take a ride on the bitter bus. After all, it's what you're supposed to do when bureaucratic nonsense derails your life, isn't it? But here's the thing… When you are given the gift of life, why would you waste that gift with anger? When you are given a gift as profound as getting back your life, you jump into it with both feet, you fly into the mystery and every day is a bit delirious with joy.
At this time of year when I look back on for another year of living and forward to the adventures of a new year, it keeps coming back to this: it's all relative. I have had seven years of life I didn't think would happen and there is every reason to believe I will have many more. Time to share with the people I love, to pursue my dreams, to laugh at Lucy's antics, to meet up with friends both in my living room and on the Internet and to see the sun shining through the tender leaves of spring.
It is all about the joy. Thank you for sharing it with me.
Happy new year!