There was a problem when I was writing My Grape Paris, and it wasn't one of my usual struggles with dialogue, overwriting, or pacing. The problem was that I knew I might be too dead to finish.
Exactly a year ago I was dying. My body was letting me know loud and clear that it was shutting down. The smell of my beloved chocolate made me nauseous. An impenetrable fog had rolled into my brain and wouldn't clear. My skin was the delicate shade of a Chiquita banana. All I wanted to do was sleep, all the time. Everything hurt.
And yet, I kept writing My Grape Paris. Some days a word or two was all I could manage. Sometimes five hundred words, or even a thousand. Not quality words, but each one was a microcosm of hope that I would be around to make it better.
Even though I was on the transplant list at the U of A hospital in Edmonton, my blood test scores weren't bad enough to put me high enough on the list to qualify for a donated liver. That's the way it is with the auto-immune disease I had (PSC)—the standard tests rarely reflect how the disease is killing us.
One amazing friend had been tested as a living donor and was rejected after a surgery date had been scheduled because our bile duct anatomy didn't match up. Another was approved but backed out because of understandable personal reasons. A third donor, my friend Nyssa, was being tested in Edmonton, but I was too battle-scarred to let myself hope anymore. Plugging away on My Grape Paris was the only way I would allow myself to keep faith.
Just in case the third time (or, in this case, the third potential donor) proved a charm, I was doing all the paperwork for the transplant to go ahead if Nyssa was approved. I remember having to decide the exact number of days I wanted to be left on a respirator before they could unplug me. Twenty? Thirty?
Death was riding shotgun with me all day, every day, but in that paradoxical way of being on the transplant list, I had to simultaneously prepare for my demise while hoping for a rebirth.
I knew I could die waiting for transplant. Many friends of mine in the PSC community had, and it was devastating and unreal every time. Even if I did get a transplant, I was informed by my transplant team of the numerous ways that the high-risk surgery could kill me. They wanted to make sure I was heading into my uncertain future with my eyes wide open. Mission accomplished. They were pried open with toothpicks of terror.
Still, I kept writing. My Grape Paris reminded me of the amazing experiences I had been privileged to have. I found myself circling back to the theme of choosing love, again and again.
A week later I was typing more words for My Grape Paris (on the couch, between multi-hour-long naps) when the phone rang. It was Nyssa calling from Edmonton.
"What are you doing next Wednesday?" she asked.
"I don't know."
"How about you come to Edmonton and I give you a piece of my liver?"
Exactly one week later, Nyssa and I waited on our gurneys with our ridiculous puffy hair caps in the waiting pen of our side-by-side ORs. Were we actually doing this? We held hands and cried. When they finally managed to detach us from each other, they wheeled me into a massive OR that smelled like disinfected steel and was filled with about thirty people bustling around.
I had time to think. None of these people were paying any attention to me; they were too busy making sure everything was ready so they could save my life.
I could never live with myself if Nyssa died, but if I died...for the first time in my life I could envision that possibility without fear. By some miracle, I felt at peace with this thing I was never able to reconcile with before.
I had chosen love in my life, and without me realizing it, love was turning out to be the main theme of My Grape Paris. If I didn’t make it, I knew I had left some of myself for my daughters in my books. Of course I wanted more, but if it ended there...that was enough. Plenty, in fact.
Looking back, I can now see that writing My Grape Paris was my way of holding space for miracles.
The fact that it will soon be in your hands is proof they happen.