This transcript was created using speech recognition software. While it has been reviewed by human transcribers, it may contain errors. Please review the episode audio before quoting from this transcript and email firstname.lastname@example.org with any questions.
From The New York Times, I’m Anna Martin. This is Modern Love. In this week’s essay, Ari Diaconis writes from a place of deep physical pain. He has a chronic illness, and he’s trying to figure out what his future looks like, with the career he’s put on hold, the daily chores he can barely manage, and the woman he really loves but can’t show up for anymore. His essay is read by MacLeod Andrews.
The wristwatch collection at the Tourneau showroom on 57th Street fills four stories. I was on the ground floor at the Rolex booth. The salesman fit a black-faced Datejust around my wrist. “The Datejust is the classic Rolex,” he said, “the foundation.” I had tried on the watch four times. I knew it was a new foundation I wanted.
For two years, I have been treading water in a sea of obscure neurological illness. It feels like a serious and unrelenting flu, and it keeps me in bed unless I make a major effort to get out. My eyesight is warped and psychedelic. I’m always nauseous, and there’s a constant throbbing pressure in my head. No doctor has been able to tell me definitively what it is. I’m 32.
Dunia’s is most of what remains from my old life. In our cozy bed, my disability disappears behind muzzles and entwined legs. We have a connection strong enough to convince me that there is still a world outside of my discomfort and twisted vision. We met in law school when I was a chiseled rock climber with outstanding career prospects.
I watched her sheepishly from my nook in the law school reading room near the nine-foot tall grandfather clock carved with a statue of Lady Justice. We eventually bonded over hamburgers at a campus cafeteria. A week later, I organized a group paintball outing, mostly as an excuse to invite her. Then we got together for a bike ride and brie-stuffed French toast at a local breakfast spot.
Six years later, our refrigerator is decorated with souvenir magnets from our trips across America. She’s my girlfriend and partner in life, even in my sickness. I massage her knotted shoulder when it freezes up, and we find pleasure in hashing out legal issues from Dunia’s job as a corporate lawyer.
When I’m well enough, I go with Dunia to the dozens of weddings she is invited to every year. Apparently, she still relishes having me as her tuxedoed guest. And that makes me happy.
“These watches keep time perfectly,” the salesman said. I was coming off a month of almost constant bed rest. I was antsy and overcome by a compulsion to do something — stomp my feet, scream, buy a wrist watch, anything. Maybe a watch would be an important investment, a commitment to my future during this difficult time. Just do it, I told myself. Do something.
It was an extravagant purchase, worth more than three months of rent. I had managed to hold on to the hefty bonus I had earned three years earlier before taking medical leave from my Wall Street law firm. I’ll buy it. The salesman, suddenly quite spirited, set into motion a cascade of fanfare. His assistant produced a miniature bottle of champagne from a back room, the mere sight of which triggered my nausea.
A young man in a slim suit peeled the protective wrapping from the sapphire crystal of my chronometer and began to polish feverishly. A barrel-chested technician emerged from behind an elevator door and measured my wrist, saying, “Sir, we should remove one link.” While the watch was being adjusted, I handed over my debit card and gulped. Part of me felt as if I had purchased a distant star and named it after myself.
Chronic illness is a grind. Renowned neurologists have told me I have disorders I never knew existed — dysautonomia, autonomic failure, persistent visual snow. They’ve assured me these conditions aren’t terminal, but I’m less concerned with death. Rather, I am concerned with how to live, how to maintain health care coverage, how to sustain disability insurance.
As my roommate and sometimes caregiver, Dunia has witnessed my struggles, including ambulance rides and crying fits. She stands by me nonetheless. Maybe it’s no coincidence that Dunia means “the world” in Arabic, because having her with me is everything. We would be married if I wasn’t sick.
I left the vast Tourneau showroom that day lighter in the wallet but heavier on the wrist. The watch felt dense, luxurious. It delighted me. I shuffled toward the subway and wondered what Dunia would think about the small fortune dangling from my arm.
Our bedroom is a cloud of freshly painted white walls, soft sheets, and warm bedside lighting. This is our hideout, a tree house floating above the pandemonium of New York. “You’re still the smartest and most handsome man I know,” Dunia says to me in our hideout. “I’m proud of you, proud of how you’re handling this.”
Then, at other times, she’s lost to me behind an invisible wall of uncertainty and fear as we talk about the future.
A load of laundry over-tires me. I can’t imagine the marathon of work, parenthood, and home ownership.
Lately, I have thought that the best thing for Dunia would be for me to leave her. It would free her from the burdens of a disabled partner, provide her the opportunity to find someone new and healthy to build her life with.
I said nothing of the shimmering fixture on my wrist when she arrived home from work. “Wait,” she said, “what’s that on your wrist? It’s so beautiful,” she said. “I fully support this. You deserve it.” She asked to try it on. I watched Dunia as she studied the Roman numerals on the dial, and I was overcome by the notion that she and I were moving through time together, like musicians playing from the same sheet music. Our future may be unsure, but isn’t everything?
As the second hand on the Datejust skated forward on Dunia’s wrist, I saw that it meant nothing other than the now — the togetherness of Dunia and me, alive and undeniable, good and right.
I can no longer say whether time is kind or just, if I ever could. Dunia and I may adapt fully to this life. Maybe not. It may be true that time heals all wounds. I can’t say.
Who am I to judge time?
Ari Diaconis died in 2018. He was 33.
After Ari died, his essay was published with the help of Dunia and his family, including his little sister Alex.
Ari’s younger sister is a lot younger. There are seven years between him and Alex. Alex’s childhood memories of Ari all happen outside — climbing trees, playing Frisbee, summers at the swimming hole.
And growing up, Ari was kind of Alix’s idol. Everything he did, she’d do too. Ari was a drummer, so Alix learned to play drums. Ari got into filmmaking and Alix studied filmmaking in college. When Ari moved to Brooklyn, Alix moved just 10 minutes away. Alix says when they were growing up, it was instinctual for her to look up to Ari, just like it was instinctual for him to care for her.
Tell me a little bit more about what Ari was like as an older brother. Was he like a protector? Did he tease you a lot? Was it a mix of both?
No teasing. I was way too sensitive for that. He was very, very protective of me, and in a quiet way, though. He would not ever be overbearing. I remember my dad, myself as probably a two-year-old, and Ari were going on a bike ride. And my dad had me in the little baby backseat carrier on his bike and didn’t have a helmet on me. My dad didn’t put a helmet on me.
And Ari, who was eight years old probably, maybe nine, he looked up and was like, put a helmet on her! And I actually fell off the bike and cracked the helmet and was fine.
Wait, so your dad did put a helmet on you after Ari said, as a nine-year-old, put the helmet on my sister?
And then you did fall off the bike, but you were OK.
Yeah. My dad told that in the eulogy at Ari’s memorial, and I was like, oh, wow, he — I realized, I was like, he actually saved my life possibly.
Two years before Ari died, Ari and Alix went on another bike trip as adults, and not just any bike trip, a 3,000-mile Florida to California bike trip. Ari was sick at the time, but he was determined to push through. And the only person he wanted by his side was his sister. Alix and I are going to talk about that bike trip after the break.
Alix, I’m really excited to hear about this bike trip you took with your brother, Ari. It sounds incredible. Who had the idea for the bike trip in the first place?
It was 100 percent Ari’s idea. Before college, he had gone on a bike trip from New York to Florida, so it seemed like, oh, let’s pick up where I left off. Let’s go from Florida to California. So I just said yes, and it didn’t seem at all crazy, other than that he was sick. At the time, a lot of doctors advised him to exercise to help with his illnesses, so I think this was him being like, let me exercise and also spend time with my sister and go across the country.
So you get on the road, you kick off the trip. Tell me about how the two of you were riding on this road.
Yeah. It looked the same for 3,000 miles, which was us on the road with the same exact bike, but his was bigger. And he was behind me the whole way. When you do long distances, you often draft off of the strongest rider.
What does that mean, draft?
You get as close as you can to the bike in front of you, within a few inches, and it cuts the wind for the rider behind. And so he was drafting off of me. And maybe from an outsider’s view, this big, strong man, it would typically be the opposite, but it’s because he was actually weaker. He would tire easily, so he drafted off me the whole time.
How did the route affect Ari’s health?
There was one moment where we’re out in the middle of nowhere and it was like an 80-mile day, and I think he literally just screamed in pain and pulled over and just laid down. And his head was just like exploding, and he looked really sick, really, really pale.
I think my mind would freeze at those moments. There were some times where I would try and instinctually try and flag someone down. Any Ari would be like, don’t. No one can do anything. It was a panic, total panic. And we didn’t have phone service. No one was around. So I just was dependent on him to hopefully feel a little better and get back on the bike, which he did pretty shortly after.
And it’s hard when, yeah, he’s the person I would go to for help and support. And when that person is collapsed at your feet, it’s really scary.
Tell me about the end of the trip when you arrive at your final destination. How did that feel when you finally got off the bike and the trip was done?
The last day was not a joyous day. It was a relief to get to San Diego, but it was the one day Ari and I got into an argument on the whole trip. We were frustrated and having trouble entering the city with directions, and he was frustrated. Anyways, it was very unusual and I was confused. He started pedaling another direction, and I started pedaling in another direction. It was very dramatic. And he turned around and gave me a hug and just said, I’m sorry, I thought I’d be feeling better at this point by the end of the trip. And that was heartbreaking to hear. I knew he had hoped it, but he really felt it, and it was hard.
Alix, thank you so much for telling me about this trip and about your brother Ari.
Yeah. Thank you for listening and caring.
Alix made a beautiful website for Ari’s memorial that has a bunch of photos from their bike trip. If you’d like to see them, she’d love to share in memory of her brother, and you can find the link in our show notes.
“Modern Love” is produced by Christina Djossa, Elyssa Dudley, Julia Botero and Hans Buetow. It’s edited by Sara Sarasohn. This episode was mixed by Dan Powell, who also created our wonderful “Modern Love” theme music. Original music in this episode by Dan Powell and Elisheba Ittoop.
Digital production by Mahima Chablani and Nell Gallogly. A special thanks to Anna Diamond at Audm and also to Alix Diaconis. The “Modern Love” column is edited by Daniel Jones. Miya Lee is the editor of “Modern Love Projects.” I’m Anna Martin. Thanks for listening.