Suleika Jaouad documented her nearly-four-year endurance of chemotherapy in her New York Times column, “Life, Interrupted,” which she followed with a 15,000-mile road trip to meet 22 of the many strangers who had written to her with stories of their own. That journey became the basis of her bestselling “Between Two Kingdoms: A Memoir of a Life Interrupted” (Random House).
In this excerpt, the author recounts how her friendship with an old acquaintance from band camp, Jon Batiste, turned into something much more.
Don’t miss correspondent Jim Axelrod’s interview with Suleika Jaouad and Jon Batiste on “CBS Sunday Morning” April 3!
I want so badly to be a normal twenty-six-year-old. I have no idea of what entails, so I look to healthy peers for cues. A little less than a month after Will moves out, my friend Stacie, a singer, invites me to hear her perform at the swanky NoMad Hotel. No part of me feels up to socializing, but I force myself to go anyway. I change out of my sweatpants and T-shirt and into a dress — a hip black dress with a high neckline that conceals my port. I fuss with my hair, trying to make it look a bit less post-chemo, more punk-pixie. At the last minute, I invited an old friend to join me, one who knew me long before my sickness. He’s a jazz musician named Jon.
When I arrive at the hotel, Jon is waiting in the lobby. The two of us go way back to band camp where we met as teenagers. Jon was gangly and awkward then, with a mouth full of braces and baggy, ill-fitting clothes, so shy he bordered on mute. He’s since undergone a transformation. Now, with his thick New Orleanian drawl, virtuosic piano chops, and dapper style, he has the kind of magnetic presence that turns heads and draws everyone in a room. Tall and slim, dressed impeccably in a tailored suit and leather boots, he’s handsome enough to startle me. His skin, a dark honey-brown, luminous looks, and his features — those lips, aquiline nose, and broad shoulders — give him the majestic air of a prince. Jon catches my eye from across the lobby, and as I walk across the room to greet him, I wobble a little under his gaze.
We take the elevator to the second floor and enter a small, cabaret-style club with ornate wallpaper and candlelit tables, and soon Stacie ascends the stage in a red gown. As she croons into the mic, her voice seductively envelops the darkened room. Jon and I are sitting off to the side, on a plush leather couch. It’s been more than a year since we last saw each other, and we have a lot to catch up on. Right away Jon asks about my health and then about Will. When I say that we are no longer together, Jon appears stunned. “Y’all seemed so…solid,” he says.
“It’s for the best,” I say with contrived nonchalance, ignoring the last four weeks spent on my kitchen floor.
“What happened?” he asks. He seems genuinely perplexed.
“The illness took a toll on our relationship,” I say. If I’m going to pick a perpetrator, illness is the easiest one to frame.
It’s the first time I’ve had to explain any of this out loud. I make it sound as if it’s all firmly in the past, as if it needs no untangling. I want to believe this — that moving on from my relationship with Will is going to help me move on from my illness.
“What about you?” I say, eager to change the topic. “Seeing anyone?”
“Also single,” he replies.
I haven’t thought of myself this way yet, as “single.” Though it’s technically true, I still feel in limbo. Single. I mouth it silently. The word feels strange on my tongue.
From the look on Jon’s face it’s also the first time he’s considered me in this light. There’s something happening between us, the air around us charged with possibility. We move on to other topics, but our conversation has taken on an edge and Jon seems to have suddenly reverted to his shy, gawky teenage self. “What’s your favorite sport?” he asks out of nowhere, rocking nervously back and forth on the couch.
“My favorite sport?I ask. I pause for a moment, then say the first thing that pops into my head: “Basketball, I guess.”
“Wow, me too! That’s another thing we have in common!” Jon says so earnestly that I can’t help but laugh.
Although I’ve known Jon for half my life, it feels as if we are on a blind date. It is awkward. Incredibly so. I wave down the waiter and order a cocktail; when it arrives, I take long swigs. As the evening progresses, I relax a bit, and Jon seems to recover from his shyness. The music turns from jazz to a thumping bass drum, and soon everyone is talking and laughing and getting up to dance. Stacie joins us, as do a handful of girlfriends. They keep elbowing me when Jon’s not looking, egging me on and telling me how it’s time to start putting myself “out there” again. For the first time since leaving the hospital, I’m feeling somewhat human, even attractive.
It’s well past midnight, the latest I’ve been out in ages, but I don’t want the night to end. I want this feeling to follow me home — I need this feeling to follow me. Jon and I linger on the sidewalk. When he kisses my cheek good night, I feel a jolt. Deep inside, some part of me knows I’m in no place to be entertaining the idea of anything more than friendship. It’s a brief moment of awareness about the state of affairs: My personal life is a mess. My body is a mess. I am a mess. My illness has left so much collateral damage in its wake. But to acknowledge that wreckage is to have to contend with it, and I don’t feel strong enough—not yet, not anytime soon. Then the awareness passes, and I am on the other side of it. Maybe things aren’t so bad. Maybe seeing other people is part of moving on. My mind will do anything to avoid a reckoning — it confuses and contradicts itself until I can no longer distinguish what is real from what is not; it convinces me that I’m fine when in fact I couldn’t be further from it.
It isn’t long before Jon and I are talking nearly every night on the phone, for hours at a stretch. He’s on the road with his band, but when he returns to the city a few weeks later, he asks me out on a real date to a comedy show and dinner. Afterward, he walks me home and kisses me—this time, on the mouth. The prospect of starting a new life seems much less terrifying with someone else by my side.
I like everything about Jon. I like how his brain froths with a million ideas and his fingers stampede across the piano keys. I like his galactic ambition, which makes me want to expand the scope of my own. I like that he maintains his limitless drive without caffeine, his equilibrium without alcohol, his sanity without substances. But more than anything, I like the way I feel when I’m around him. Jon treats me like a healthy, normal, capable person — like the wild-maned, mischievous girl I was at thirteen when we first met. He treats me like I’ve never been sick, and even though that doesn’t necessarily align with the way I see myself or feel, it makes me want to play the part. And for a while I do. I play the part so well that I almost trick myself into believing it’s the truth.
Although I can’t admit it to myself, I’m as seduced by Jon as I am by the idea that a new relationship will help expedite my return to the kingdom of the well. Over the next few weeks, I cannot see him often enough. I join him on tour for a couple of days. We wander around strange cities hand in hand, talking for hours and making shy declarations on park benches. We stay out all night with his friends from him, bopping from jazz club to jazz club until dawn. I never let on how exhausted I am, I never say no, determined to prove I can hang like everyone else.
But back in New York, when we spend our first night together at my apartment, I am as shaky and uncertain as a lamb. It was one thing to be intimate with Will, who witnessed my body undergo the metamorphosis of illness; it is another thing entirely to be intimate with an outsider, a civilian. As we undress, I feel exposed and insecure. My body reveals a different story to the one I’ve been presenting: I’ve lost nearly twenty pounds from the recent bouts of C. diff, and my ribs protrude through thin flesh. Bruises and needle marks from IV lines, injections, and blood draws cover my arms. Scars whorl my neck and chest from the multiple central venous catheters I’ve had over the years. And my port: I still have that, too.
A round plastic butte beneath knotted scar tissue, the port juts up conspicuously above my right breast, hard to the touch. I don’t know if I should explain why I still have it, or hope Jon somehow won’t notice it in the darkened room. There’s so much he doesn’t know. If things get more serious between us I’ll have to delve into the supremely sexy topics of infertility and chemo-induced menopause, among so many others. The mere prospect of these conversations is enough to contemplate celibacy. Breathe in, breathe out. I don’t know how to do this.
Jon traces a finger from my lips down my neck to the swirl of scars on my chest. Leaning over, he gently touches his lips to my port then says, “You’re the most beautiful woman I’ve ever met.”
The summer feels like falling in love, not only with Jon, but with the promise of a different life. The only problem is, I’m building this new existence on top of the crumbling foundation of my old one. In late August, after not seeing each other for many weeks, Will and I decide to meet. We grab iced coffees from our favorite breakfast spot across the street and head up to the roof of my building. “I have something I need to tell you,” I say, as we sit down at a picnic table.
“Me too, but you first,” he replies, ever the gentleman.
I came here planning to tell him about Jon. My announcement isn’t coming out of nowhere. Earlier in the summer, I’d warned Will that I was thinking about seeing other people, but he wasn’t dumb — he knew that by “other people” I meant Jon. I’d mentioned that we had been hanging out, and I remember Will saying, “Let me know when you’ve tired of your rebound.” He seemed confident that it was just a temporary fling. The remark infuriated me, in part because Will did n’t seem to mind as much as I’d hoped and in part because so many of his assumptions about him were right — about my anger at him, about my inability to be on my own. But since then, what started as a rebound had turned into a meaningful relationship and I felt like I owed Will the truth.
I had rehearsed all morning in my head, telling myself that if I could choose the perfect words, if I said everything just right, I would understand. We would be able to forgive each other and find closure, maybe even lay groundwork for a lasting friendship.
From “Between Two Kingdoms: A Memoir of a Life Interrupted” by Suleika Jaouad. Copyright © 2021 by Suleika Jaouad. Published by permission of Random House, an imprint and division of Penguin Random House LLC. All Rights Reserved.
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