The Mysterious Medical Condition That Defined All My Relationships

Photo: J.V. Aranda

At the end of our first date, I looked at Lucas in his Bad Brains T-shirt and worn-out Chucks and thought: “Oh, we’re meant to be friends.”

It had been, in many respects, an unusually good first date: We’d been instantly comfortable with each other, laughing over drinks even as we talked about some of the hardest stuff of our lives. But between us there was less spark than familial warmth.

Still, as we paused at the gate of Thompson Square Park, the summertime drinkers stumbling around us, he leaned in to kiss me, and I let him. A cab rolled up to the curb. Lucas opened its door. “Green Street and Wooster,” he said. He motioned for me to climb in, and I did. We were going to his apartment. He was 35, and I had just turned 20.

What can I say? I lived in a rented room in a condemned building where sex workers used abandoned apartments for their clients. Lucas’s Soho loft sounded like a palace, a welcome escape. Perhaps most all, I needed someone to take care of me — though I didn’t realize that I was searching for that at the time.

Three years earlier, I’d left my hometown for college in New York City, freeing myself from family drama only to pursue my own youthful drama: a volatile first love and brutal breakup, weekends lost to alcohol and drugs, a series of low-paying jobs, and a string of men I kept at a distance so they couldn’t see what lay at the center of this chaos: I was in pain. And no one could figure out why.

After contracting a series of urinary tract infections my first semester of college, my symptoms lingered and then worsened, even after my urine cultures came back clean. The pain was constant, sending me jumping off the subway mid-commute to find the nearest bathroom. As the months, and eventually years, went by, no doctor could name what was wrong.

“It’s just anxiety,” one older male urologist told me, and patted my knee.

The pain grew deeper and aching, as though it had burrowed into my nerves. At night, I drank to numb it. Sex left me feeling bruised and burning — a fact I told no one, not even the men who made me that way. I gave up on doctors and began to feel like a diagnosis, much less a cure, was an impossible dream. Pain simmered beneath the surface of my days, barely hidden from the world.

Despite Lucas’s age, I felt safe with him, compelled, from the beginning, to hide very little from this man, who seemed to me like an overgrown kid: vulnerable and quick to laughter, his puppyish hair shaggy around his ears. He was more playful and transparent than any guy I’d dated before. He cried watching romantic comedies and teased me for taking life — and myself — too seriously. Being with Lucas felt easy, like there was no chance he could hurt me.

Lucas ran a record label, and he lived in its offices, shipping boxes of CDs and rolls of packing tape covering his bedroom floor and kitchen counter.

I worked down the street at a performance venue on the Bowery, so I began stumbling to his place at night, emerging from his bedroom in the morning, hungover and smelling of beer, running late for class. His secretary, answering phones, pretended not to watch this daily spectacle.

“You dog,” she said to him when she found out how old I was.

“She’s not your average 20-year-old,” he told her.

I thought that maybe he was right — but not in the way that he guessed. I suspected, in fact, that I was the dog, the one taking advantage of Lucas. He was going all in with me. I liked his husky laugh and barrel chest, the way talking to him opened a kind of valve in me: I, usually so guarded in those days, would chatter incessantly over French fries at his local pub while he looked at me, bemused. A quiet tenderness for him was certainly blooming in me. But love? I’d always imagined that love was a kind of divine insight two people had into each other, and I doubted we really saw each other like that.

On weekends, we’d rent a car and drive up to Long Island, where his art-dealer mother owned a Victorian with wraparound verandas and slate-colored floorboards, the kind of house I had only seen in movies. We’d ride bikes to the Sound, watching the homes go by like a film reel, fantasizing about which one we might live in. His Soho apartment became my retreat. I passed up nights of drinking for ’90s rom-coms in his bedroom. I began to wake up not smelling of beer.

And — most shockingly to me — I allowed him to see my pain up close: In the middle of the night, he’d find me doubled over the toilet in tears. During sex, I’d clench my eyes shut, and he’d actually retreat.

Lucas never asked me about it afterward, never tried to diagnose or prescribe. Instead, he witnessed my pain. It wasn’t love, but it was something I needed much more at the time: the relief of coming out of hiding.

Six months into our relationship, Lucas moved out of his offices and into a pre-war apartment in Chelsea, with an elevator and doorman and ivy-covered brick walls. He took me to see the two-bedroom, which was empty and echoing, the living room full of afternoon light.

“I want you to move in with me,” he said. I looked through the windows down at the tree-lined street, wondering what it might be like to wake to this each morning.

“And I want to get married,” he said.

I had not seen that coming.

A week later, I broke up with Lucas in his beautiful apartment. I didn’t know much, but I knew we weren’t each other’s lifelong match. Trudging home through the snow that night to my dingy apartment, I comforted myself with this thought: We’ll be friends. We’ll be what we were meant to be.

Lucas, of course, refused to return my calls. This, too, I’d been too naive to see coming. Because I was exactly what he thought I wasn’t — your average 20-year-old — I hadn’t paused to consider that a man his age might feel that he didn’t have time to waste. He had meant it about buying a house on the Sound. He had not been playing make-believe.

While Lucas built himself a life in that airy place, I returned to my tenement building, finished college and cobbled together a meager income between part-time jobs. But my symptoms were getting worse, leaving me dizzy and unable to stand all night at work. I yearned to call Lucas, to curl up and eat takeout Italian in his bed.

Instead, I picked up the phone and called the doctor. I went to one appointment, and then another.  And another. Until one day I was leaving a urologist’s office, frustrated and near tears, and his nurse stopped me, slipping me a piece of paper with the words “Interstitial Cystitis” scrawled across it.

“I think you might have this,” she said. “Go see Dr. Kappler.”

She was right. I had, it turns out, a severe case of a painful bladder condition that has no known cure. It had worsened significantly over the course of those four years. After months of trial and error, I found a medication that dimmed the pain. I quit drinking. I radically changed my diet and got a boring but secure 9-to-5 with health insurance and a decent apartment. I was a long ways from happy, but I could feel myself struggling toward something.

And then, a man — just my age this time — came into my life. Andrew looked at me with green, watchful eyes, and it felt like he actually saw me, perhaps because I let him. Slowly, we fell in love.

Around the time Andrew and I started dating, I ran into Lucas on the street. He had just moved in with his girlfriend of a year, a painter. He looked buoyant but less boyish, his hair shorter, his T-shirt replaced by a black button-down. He seemed settled in a way he hadn’t before, like he’d landed well and firmly. I asked him if he’d like to get a drink sometime and he nodded, but I knew from the wary look in his eyes that was never going to happen.

It occurred to me in that moment that maybe Lucas had seen me, just not in the way I wanted him to. He saw the evasive young woman, the pain, the shame. It’s true that I was not in love with him. But it’s truer that I was not in love with what he saw.

If we had gotten that drink, I would have liked to tell Lucas that this seeing was a way of holding me, the most profound kind of care I’d ever been given. I’d tell him that our time together gave me not just a respite from an unbearable present, but a vantage point from which to view a possible future. And from there, eventually, I summoned the courage to actually create one: to love and marry a man with whom I feel unshakably safe.

Andrew and I just celebrated our sixth wedding anniversary. Sometimes, when my husband sees me at my worst and doesn’t flinch, but instead takes in the full spectrum of what is before him, I manage to hold his gaze. Sometimes, I even love what he sees.