Always out here. Looking for . . .
I don’t remember exactly how I “found” Suleika Jaouad, but I discovered her Isolation Journals project in the early days of the pandemic back in 2020. It was such a refreshing little island for me in that sea of despair. Maybe you’re familiar with Suleika yourself . . . through her Isolation Journals project . . . or maybe from her poignant “Life, Interrupted” column written for the New York Times (a decade ago now) about her life as a young woman with cancer. . . or maybe you know her as Jon Batiste’s wife (which she is) . . . or maybe you’ve read her beautiful memoir, Between Two Kingdoms. And if you haven’t “found” her yet, well. Maybe you’d like to. (Click any of the links I’ve provided for a way in to Suleika’s world.)
Suleika, you see . . . is a force.
She has a particularly nasty and aggressive form of leukemia, diagnosed at age 22 — just as she was embarking on her life post-college, full of dreams and aspirations and hope. She’s gone through unimaginably difficult treatment protocols for her cancer. She’s suffered side effects and related, life-threatening infections from those treatments. She has relapsed. She has gone through it all again. She has survived. She has thrived. She has figured out how to live with this disease hanging over her head. And . . . she’s figured out how to hope.
Often, when I’m feeling overwhelmed or out of sorts or worried about the world or just plain feeling sorry for myself, I ask myself . . . What would Suleika do?
And sometimes, I get an answer.
Yesterday, for example, I opened up Instagram and saw a post from Suleika. This post featured adorable photos of a new pup she had just adopted, adding a second dog into her life. The post included her explanation . . . of how she came to choose adopting another dog when her life is always teetering at the edge of a relapse. Here is part of her comment (you can click here to read her entire post, which includes photos of her most precious and beloved dogs).
Of course, the prospect of a second dog brought up concerns that had nothing to do with a puppy, but the question that haunts every major life decision: my health and the possibility of relapse.
But I know in my bones that to be cowed by the specter of relapse is no way to live. To make decisions with that fear as my focal point makes it very hard to get out of bed. It would be impossible to make any long term commitments. The usual markers, like the five-year milestone where you’re considered cured, no longer apply to me.
What to do in the wake of that—when time feels like a waiting room? The conventional wisdom here is very carpe diem. It’s that you should live every day as if it’s your last. But I’ve left that adage behind. Not only does it have a doomsday cast to it, when we think in those terms, the focus is on what we can take. It’s “What can I wrench out of life?” as opposed to “What can I give?”
Instead, my guiding principle is to meet every day as if it’s my first—to welcome each new morning with the wonder and curiosity of a newborn. Rather than what I can get out of this life, I’ve reoriented my gaze to what feels life-giving—both to my own sense of well-being and to those around me.
— Suleika Jaouad
That, my friends, is what hope is all about.
Here’s to a good weekend for all of us.
A weekend filled with hope.
See you on Tuesday!