Between Two Worlds

Fresh air

I recently read the book “Between Two Kingdoms” by Suleika Jaouad. It is a memoir about cancer, told in first person by Suleika who was diagnosed with leukemia when she was 23 years old. The book documents her journey before diagnosis, through treatment, and during her recovery and reintegration back into “the kingdom of the well”.

I came upon this book not because I was looking for a “cancer story” to relate to, but because I was looking to write my own memoir and wanted to read something in the same genre. It just so happened that when I went looking, the memoir that came back to me was extremely close to home. And so it became my companion during Violet’s first and second stem cell transplants.

It’s a beautiful book, and one that I sincerely recommend. But what has stuck with me about the story is that its focus is on life “after cancer”, and the challenge of living life in a kind of new normal - somewhat forever apart from a world of people that cannot relate to her experience, trying to figure out an identity after such a significant period of transformation.

This morning I woke up with a hangover. On a whim yesterday, Matt invited our friends over for a campfire in the backyard after Lucy finished school. A year ago, a last-minute barbecue would have sent me into a tailspin of anxiety, ensuring the house was clean, the food array was bounteous, my hair was done. Priorities are different now, and the self-inflicted pressure to impress is muted by a more urgent desire to enjoy myself.

And so I did. I thoroughly enjoyed myself, savoring the precious time with friends and milking the minutes that Violet was up off the couch and lost in an imaginary world with friends in the fresh air.

For a brief period, I forgot that things are “different” now. It was just an evening like old times, enjoying the spring air and drinking too much wine on a weekday.

This morning I woke up, poured myself a coffee, and sat down to skim through Facebook posts before waking Lucy for school. The first thing that came up on my feed was a post from a friend in the BC Children’s ward whose sweet young girl is currently fighting her way through a very challenging second transplant. She is right in the thick of it – right where Violet was when things looked the darkest. Immediately I was right back there, sitting beside Violet’s hospital bed, watching her swollen face breathe through an oxygen mask that cut off the circulation in her skin. Waiting for the next doctor to come in to update us on what factors we should be worried about – what details threatened her recovery and eventual discharge.

Not only did my friend’s post outline her daughter’s struggle, but she also called my attention to another awful piece of information. As of this morning, three warriors have lost their battle in the oncology unit since they were admitted a few weeks ago. Three children, likely whom Violet smiled at in the halls only weeks ago, are gone from this world.

Violet came up the stairs hours after Lucy had gone to school. She was up until midnight – still on hospital hours, where the pain had kept her awake throughout the night. Her skin on her mouth and chin are raw now from the side effects of the immunotherapy. But she had a smile on her face, despite cracked lips and bleeding gums. 

“This isn’t over,” was what the voice screamed violently in my head. “Don’t get too settled.” Because we are not yet “in” this world, not yet “out” of the other. We are visitors, trying to establish a presence at home that is both comfortable and temporary. Yes, we are home. Yes, we are through the thick of it, we hope. But we are not on solid ground. We are not out of the weeds. We are not yet in the kingdom of the well.

It is a delicate act of faith, and a deliberate feat of storytelling, to keep things in between the lines – in between these worlds. There really is no finish line, though there will hopefully be a time that we can take deeper breathes and relax a bit more into routine. And there are pros and cons to that. Getting settled in means less attention is paid to the immediacy of the moment. Routine means letting habit take over a bit, and falling into old stories helps the efficiency of life. Constantly looking at everything through a magnifying glass is exhausting and sometimes anxiety inducing. 

This is particularly true, for me, when it comes to socializing and being a part of the community again. Because I don’t quite know who I am within it anymore. I don’t quite know what to talk about aside from her illness.  I don’t entirely know what to let go of and how to do it.

But I think that’s ok. I think that’s the delicate dance I’ve always wanted to perfect. I want to be able to be consistently flexible in life, no matter what comes up. I don’t want to have to lean in to the rigidity of the expectations I think others have of me, and I have of life. I want to take things as they come and go with the flow – be the person I am in the moment and not worry too much about who I have been or who people think I should be. I don’t want to need anything to be any certain way in order to feel comfortable and secure and happy.

I think about those families who are in mourning now, and everything they have gone through. I think about my friends who are there as we speak, clinging to moments of hope and evidence of improvement. I think about how it will be to go back in next week and once again be admitted into the kingdom of the sick, trying to keep our heads above water and not be too indoctrinated into that universe and the expectations that come with it. 

Violet is doing so well. Remarkably well. And it could have gone the other way. It can still go anyway, now. There is no finish line.

There is today. There are weeds to pick in the yard, and homework assignments to complete, and medications to take, and Roblox games to play. There is work to be done, and people to visit, and sun to soak up, and blogs to write. There is life to live, even in limbo. There is trust – faith is the string that pulls us through and keeps us on track. Binds it all together. Clarity and confidence and security exists in that place in between where there is no struggle to define ourselves by the constructs of any particular kingdom.

Lucy has told all of her friends at school that Violet’s cancer is gone. And it is. And it can come back. And we are still fighting hard to ensure that it doesn’t. It’s not over, but it never really will be, and that’s ok. Because if it was actually over, then we would settle back into routine completely, and then there is some magical piece of this that is lost. That inability to put the blinders up and run on autopilot. 

This morning Violet put some cream on her skin and settled into the couch to watch a show. The lanolin erased any evidence of dehydration. She waved me away when I brought her anti-nausea meds. “Don’t need ‘em today,” she said, not looking up from her screen. I shrugged, then realized the significance of that step toward healing. I almost took it for granted, that little sign. But I didn’t. And hopefully I won’t next time, either. Hopefully I never take it for granted again.