Writers usually know how their books are going to end. But just as award-winning Canadian author and playwright Ann-Marie MacDonald was completing the first draft of her latest novel, Fayne, she was swept into a story of her own.
Rheumatoid arthritis had crashed into her busy life, forcing her to dramatically modify her work and sending her on a search for answers.
Much like her character, Charlotte, in Fayne, MacDonald had a painful mystery to unravel for herself. We won't give away any Fayne spoilers, but here's an edited version of our conversation with its author. Be inspired by what MacDonald has learned about life because of her disease.
What is Fayne's story about for you, as its writer?
It's a story about the quest for identity and the quest for truth. It's also about the struggle to be able to look at truth with the kind of courage that requires, and to come out with love – which is different from love in the sense of "everything's rosy."
Fayne is set in the late 19th century, on the boggy border between Scotland and England. What was it about this period and setting that attracted you?
Jane Eyre [by mid-19th century English writer Charlotte Brontë] rocked my world. I was 10 or 11 when I read it for the first time. I love the size of the storytelling, I love the mystery, I love the voice and the power coming from the earth itself, that we are in relationship with the earth. The earth has a voice and it's magic and scientific and spiritual all at the same time. So the interconnectedness, the quest for identity is very front and centre with the genre of Victorian Gothic fiction. I know when I see a crumbling mansion set on a lonely moor, there are going to be secrets. I know that all is not as it appears to be.
This was also a time when people had all kinds of mysterious and known illnesses or "conditions," including Charlotte. What is it about illness that interests you?
When I went through the worst of my experience with seronegative rheumatoid arthritis, and I was also writing the character of Clarissa [Charlotte's aunt, who appears to have a condition of her own], I thought, "Wow, I've always been fascinated by pain and I've got chronic pain and this is terribly new." Then I realized that it is not new to me. As a child, I endured multiple fractures and two serious bone graft surgeries and chronic pain for years in my left arm. It was due to bone cysts. I finally had to put it together that right, for the thousandth time Ann-Marie, could you please remember that you are a veteran of chronic pain? Your lifelong fascination with pain is not simply outside yourself. It's always been there.
How did you discover that something was wrong with your health?
In November 2018, a collection of symptoms – each of which I had experienced for years, but would always be one at a time, and then they would go away – all came at once, and they didn't go away. And they got worse. And then began this slow-motion cascade where it seemed like there was no part of my body that was free of pain and, in some cases, terrible swelling. I got incredible rashes. I got weird nosebleeds. In addition to the more conventional and sufficiently horrible joint pain and immobility was this absolutely shocking nerve pain, which wasn't touched by any of the painkillers. There was not a particle of my everyday life that was not restricted and affected. I didn't know what to do and I didn't know if it would ever pass or if it would ever get better.
How did arthritis change your writing process?
I had to delay everything by a year right off the bat because I knew I couldn't stay on schedule. I had to absolutely just stop for a little while and then gradually re-approach the work and figure out what I could do within my limitations. I still discover strange props and support bands and all kinds of aids that I accumulated in order to be able to get through the day or really to be able to sit, which was terribly painful all the time, and find a position where I could be sufficiently supported and bandaged and propped such that I could type.
Arthritis Society Canada talks about "the fire of arthritis." Does that description resonate with your own experience?
If you've ever had swelling of the joints, it feels like it's boiling and expanding in there. Fire describes it very well – heat gone out of control. Of course, nerve pain is different. That's the scorch of ice. That's blue heat, where it's so cold, it's hot.
How are you doing now?
I am symptom-free. And I am being slowly weaned off of a low dose of a weekly immune suppressant which I take in pill form. I have a sister who went through a serious autoimmune disorder as well. In her case and in my case, it has left us with vulnerabilities, but we're both also incredibly grateful.
You have been busy with so many projects, in addition to Fayne. Do you have anything to share with other people living with arthritis about persevering through its challenges?
Anyone who is living with arthritis already means that you're persevering. Give yourself credit for that. You don't have to push yourself to prove how brave and persevering you are. What I still remind myself is that I have to trim my expectations. I used to think discipline was all about getting as much done as I possibly could. And now I understand that the higher level of discipline is doing less and doing it consistently, and that stopping work on time is as important as starting work on time. But self-compassion and kindness for me is the core.