This was the morning I almost gave up on myself. It was another September 11th in New York, and I’d woken up in my matchbox room with ninety-degree heat seeping through the seams of my AC window unit. There were only a few more weeks of summer weather left, but I had barely gotten to the beach. This is remarkable for me because I love summer—no, live for summer. For the beach, to be exact. And yet that summer of 2013 I had barely left the confines of my room.
For over a year, I had been dragging myself from doctor to alternative health practitioner to doctor. My life had been completely sidelined by an escalating slew of symptoms: fatigue, facial numbness, full-body aches, hard-to-explain anxiety. My right leg had a bizarre hollow feeling like moving it was a mechan ical not organic process. I’d come to think of it as my “peg leg.” None of the doctors got that one. I was endlessly inventing ways to describe what I was feeling in hopes that some key word or words would trigger a diagnosis. The fatigue is like . . . the fatigue is like . . . You know that new feature on Netflix that it’ll now automatically play the next episode of a show you’re watching, so you don’t have to lift a finger? That feels like a godsend.
My descriptions, elaborate or straightforward, only led to prescriptions for antidepressants, which I never filled. I didn’t know how to translate what was happening to my body into language because it was like nothing I had ever experienced before, and I was so in it that it was like describing water from the bottom of a well.
I have lost my taste for metaphors. Illness as metaphor. No, it is not . Sontag knew.
My last-resort doctor, who claimed to catch whatever slipped through the cracks of Western medicine, dug out of my stack of medical records a test for Lyme disease that a rheumatologist had ordered earlier that year. The rheumatologist had told me I didn’t have Lyme, but my new doctor said that the results were positive, even by the CDC’s narrow diagnostic standards. At first I was confused. Then I was angry. Then I cried, relieved to finally know what was wrong with me. This doctor put me on doxycycline, the first-line antibiotic for Lyme disease. But I felt worse on the antibiotics, and she took me off them after four months. Then she took back her Lyme diagnosis and gave me the business card of a cognitive behavioral therapist so that I could work on my “fear-based thinking.”
This is where I was when I woke up that September in 2013: sunk in despair. Doctors had given up on me, after taking my money. I didn’t know if anyone really believed me. I remember feeling utterly alone that morning. I remember lying in my sheets and wanting to die. I remember thinking, Why would I choose this life that feels this unlivable? I remember believing that I wasn’t a strong person.
I don’t know what it was in me that suddenly screamed: You have to DO SOMETHING! Maybe it was some sort of animal survival instinct that propelled me to reach over to my desk, which was right next to my bed, and retrieve a business card. Not for the cognitive behavioral therapist, but a black business card with white script that simply read: Locals .
It was a surf school at Rockaway Beach. My sister-in-law had picked it up for me. I looked at the card thinking that I must be crazy to even consider this, because some days even the walk to the subway felt impossible. But I called. I didn’t know if I could do this. I was hoping for voicemail so I wouldn’t have to go, but then one of friendliest voices I had encountered in a long time answered. And he sounded stoked. We scheduled a lesson at noon that very day. He told me which A train to take and how long I should give myself to get to the 67th Street Beach at Far Rockaway. It was precisely the guidance I needed.
I had been watching surf movies since that winter. I’d found that they offered me some relief. I started with the obvious: The Endless Summer movies. At first, the only surfer I really knew was Kelly Slater, from his cameo on Baywatch when I was a tween. I had also seen him surf in person two Septembers prior when the world tour blundered into Long Beach, New York. Owen Wright, a lanky Australian, won that contest. So I guess I knew who he was too. I had gone with my friend Aaron and his wife Angela because I had never outgrown my adolescent love for surfers. This was back when I was well, another lifetime ago.
Aaron and I were friends from grad school. During the two years of our MFA program talking highfalutin’ literature, I had no idea that he grew up surfing in San Diego. But once I got sick, I’d lost all cultural and intellectual curiosity and only sought the most gratuitous escapism. (I read all three books of the Fifty Shades of Grey trilogy, which my brain could manage but then promptly forgot . ) So Aaron and I began nerding out in a new way: over surfing. He educated me on different surfers, and got me watching John John Florence (my favorite) and Dane Reynolds (his favorite) on YouTube. We livestreamed competitions in his Carroll Gardens apartment. He explained to me repeatedly what a foam ball was. I ended my subscription to The New Yorker and started one for SURFER.
As winter raged white and gray outside, my tiny room was filled with the soothing light of blue and turquoise waves from my laptop. Then it was spring, then summer, and I was mostly confined to my room. Aaron and Angela brought me DVDs of Kelly Slater to watch when it felt too overwhelming, sensorially, to go to the movies with them. Good surfers, like Kelly Slater, make their tremendous expenditure of energy look effortless. I envied any sort of effortless expenditure of energy. As the cicadas outside in my charming Brooklyn Heights neighborhood felt like they were buzzing insanely inside my body, I watched Slater carve waves.
I had surfed once before when I was fifteen in Hawaii. My grandfather had taken my parents and me there. I remember listening to Luscious Jackson on my Discman in the backseat of a car watching sugarcane fields rush by and thinking, This is Hawaii. I remember Granddad’s red duffel bag clinking with his personal stash of vodka bottles as we boarded a small plane. I remember my mom crying to my dad about something my grandfather had said or done. I remember a helicopter ride over the lush cliffs and waterfalls of Maui. I remember looking at something barely visible in the water and it was Pearl Harbor. I remember meeting Don Ho. And then there was a memory so separate from the rest that it belongs out of place and time and in eternity.
I’m not sure about the whys or hows of it, but I went off on my own to take a surf lesson on Waikiki Beach. We paddled out far. The water was warm. My surf instructor kidded with me about wanting to catnap me—whatever creepy thing that meant—but men didn’t come on to me yet, so it felt thrilling. And so did being out there. I was free from parents, a world away from the high school I hated, and had even left on the beach the embarrassment of a body I deemed too fat for a bikini. Paddling was hard and my instructor had to push my gigantic foam board over sets of waves. And then—a jump to the memory of standing on the board and riding an unbelievably long wave towards the shore that was coming at me in clipped sound, sun, wind, speed, beach, hotels. I was surfing. It was the best feeling in the world.
Three of the Local boys were waiting on the beach, and when they saw me, they waved me over. I couldn’t help but gush: Are you all going to teach me? They were so cute—tan faces, slightly peeling noses, bright white teeth—and so friendly. It brought me back to my girlhood, when I played sports with the neighborhood boys. A gentler time, before boys and girls were at such odds with each other, before the battlefield that is dating in New York.
Kevin— Kev! —was my instructor that day. He was twenty-one and was tall and lanky, like Owen Wright, and even called me love like an Aussie even though he was born and raised in Rockaway like the other two instructors, the two Mikes. He had total surfer hair: long, blond, tangled on top of his head.
The water was warm and the waves were gentle, maybe two or three feet high. The two Mikes, done with lessons for the day, surfed around me on their short boards and egged me on as Kev held onto my monster foam board and positioned me towards shore, which at Rockaway is close to where the waves break so he could stand in the water next to me. On the beach we had already gone over my pop up—basically, jumping up from chaturanga position in yoga to Warrior II. Kev was choosing waves for me and I could relax on the huge flotation device with my back to the waves—sun, warm water lapping over the board’s rails. Once in a while, a wave would come that was too big and suddenly breaking and Kev would throw his arm across my back and “seatbelt” me so I wouldn’t be torn off my board. A couple times he had to throw the entire length of his body over mine and, sandwiched like that, roll us upside down under the breaking wave in a “turtle roll.” It was thrilling.
I caught waves easily that day. Kev would pick one for me, position my board at the right angle, and then call out: Paddle! There were stages to paddling, different speeds and ferocity. DIG DEEP! An unexpected force would suddenly lift beneath me and my heart would panic. Kev would yell: Pop up! Pop up!
And then I was surfing.
The rides were short, but spikes of pure joy. Afterwards, I would laugh uncontrollably in the bubbling white water and then paddle back out for more. My arms started to feel like wet noodles. My whole body was shaking. But what I was feeling was—I felt well.
I came across the concept of a “surf cure” in the surfing memoir West of Jesus. Its author, Steven Kotler, writes about how, after two years of battling Lyme, he was still so sick that getting out of bed to make himself coffee felt like a Herculean feat.
My doctors had told me there was no way to know if I was strong enough to do anything unless I tried to do something. They claimed I wasn’t going to get any sicker, or not in a permanent fashion, but that wasn’t saying much. Truthfully, I went surfing because I was already done. My ass had been kicked but good. Illness had won. I could no longer write; I could barely walk across a room. Long ago I had decided that given the right set of impossible circumstances, calling it quits was always an option. I went surfing because I had been contemplating suicide for months and decided I could try one more detour before heading down that route.
With just a one-hour surf lesson, my despair was gone—and the fatigue and the body aches. Maybe it was just the shocks of adrenaline to my system. I didn’t care. If surfing was the panacea to my mystery illness, I didn’t care to examine it.
I did, however, remember another rheumatologist who, when he couldn’t find anything wrong with me, suggested prayer. He cost $800 out of pocket. I told him I wasn’t religious. He’d said then: Follow your bliss . Maybe I shouldn’t have dismissed him. Maybe this was all in my head and I just had to be happy. Maybe I just hadn’t tried hard enough.
I became convinced that as long as I surfed I would stay well.
I tried to get out to Rockaway once a week for surf lessons. I remember those hour-long rides on the A train. I would find the perfect song to listen to on my iPhone for that moment when the train crossed over the channel and the water glittered to the sea. As late summer turned to fall, I felt as if I were falling in love. I mean this. The feeling I had was exactly like falling in love, sans the other person. All I thought about was surfing and when I could go out again.
People become obsessed with surfing. Or, should I say, stoked. For me, I think what was addictive was the state of presence I experienced when riding a wave. Riding a wave, there were no thoughts; any intelligence was physical. There was only what was happening: sound, wind, speed. There was stillness in action. Calm. The opposite of the chaos and constant worry of illness.
One Saturday night, I felt the fatigue start up again but I pushed it back to go to an acquaintance’s birthday party. There I met a boy who was tall and whose presence made me feel calm. I launched into a conversation about surfing, naturally. He was the complete opposite of the chaotic poet-bartender types I had dated; he worked in private equity. But being sick had changed what I wanted: I craved stability and security. And I liked him. On our third date, he told me he wasn’t looking for anything serious, that New York boy anthem.
The next day, I had a surf lesson. The temperature had dropped thirty degrees overnight. Indian summer was over. One of the Mikes was already waiting for me in the water, trying to stay warm by catching waves, and he signaled to me to put on the thick wetsuit that he had left on the beach. Apparently, the conditions were perfect—I don’t know what goes into making that statement—but I had never seen waves like that out at Rockaway. They were also bigger than what I was used to.
I paddled out alone, something I had never done before and made me feel like a real surfer. Probably because it was freezing, only one other surfer besides Mike was in the water. It was quiet out there. That day was daylight savings and the light was slanting in golden, enchanting light. The glassy waves turned over beautiful colors. This was why people surfed. Mother Nature kept furling and unfurling her beauty. We were in her cradle, at her altar, in her clutch.
The waves were big. Mike would give me the best ones and let me know it to motivate me to stay on my board. I was determined not to fall off because it was so cold. I was learning to turn and ride down the wave—lefts mostly at Rockaway—instead of straight into shore like a kook. I was still upset about the guy from the night before. I threw myself onto these perfect waves and caught them all. I did this until I was no longer upset. After the session, Mike had to sit with me in the Locals van with the heat running and pull off my booties because my fingers were frozen. He told me I was one of their top five students. This fed my ambition.
The next day I got sick. Cold water had been flushing through my wetsuit that whole hour session because I had put my booties on wrong. It was just a cold at first, but then felt like pneumonia. It triggered the fatigue, the body aches, everything again. I never got better. Surfing, it turns out, could not save me.
Aaron used to tease me about my “surfing Sherpas,” as he called my surf instructors. According to him, the only way you learned to surf was to paddle out uninstructed and wipe out a bunch. Maybe this is true but I knew on days when the rip tide was a little too strong or when a rogue wave appeared, my surfing Sherpas couldn’t rescue me from the panic in my mind. It was up to me and only me not to open my mouth underwater. One time, I went out to Montauk to take a lesson and my less mindful surfing Sherpa kept ditching me to catch awesome waves. I got pummeled by a big set and caught in the impact zone. When repeatedly pushed underwater, it was up to me to fight to the surface for air. Bravery, I believe, is not the absence of fear but rather, in the full experience of it, the decision to not give up. It’s up to you and only you to save yourself.
This is what I learned from surfing and this was what kept me going when the illness wiped me out again. I had to dig deep and find that part of myself that was unbreakable. And this is when I became someone I never thought I would be: a strong person.
I had never before understood why people who have recovered from intense illnesses feel the need to push their bodies to the physical limit and run marathons as “survivors.” As if your physical trials hadn’t been enough. I don’t think when I get well I’m going to be training for the next Ironman in Hawaii. My daily visualization of recovery, done religiously every morning because this level of devotion and belief is nothing if not religion, is of myself in a white bikini frolicking in full health on a beach in Hawaii. Yes, frolicking. And yet there I had been on a surfboard throwing myself onto wave after wave, pushing my body to its limit, even though its limit was dictated by something else, some foreign illness. Maybe that’s what it’s all about for those marathon survivors: reclaiming your body. My body was mine to push to the limits—not yours—mine to put into danger. Not by the mysterious invasion of illness. Mine .
I was conclusively diagnosed with Lyme disease that next summer of 2014. I had been sick two and a half years. A “Lyme literate doctor,” as it is known in the chronic Lyme community, diagnosed me using a more sensitive test by the IGeneX laboratory. He wanted to start me on two different antibiotics and possibly switch to IV antibiotics, which would mean implanting a Hickman line in my chest. I decided to go out to Rockaway for one last surf lesson before starting my treatment. My friend Katherine came with me and fell asleep tanning on the beach while the waves worked me over. The shore was too close because some post-Hurricane Sandy reconstruction had caused some filling-in of sand. I was working on turning again, and whenever I wiped out I was ground into the beach. Sand got underneath my rash guard and rubbed my skin like sandpaper. I was eating shit but with a shit-eating grin. I knew now to bask in moments like these. I never knew when my body would cooperate and today it was and today I was out at Rockaway Beach with one of my best friends and I was catching short joyrides on waves. Moments like these felt stolen. Why does joy always feel stolen, not mine for the taking? Mine, mine, mine.
Later would come the endless antibiotics and pills, the googling of “ Jarisch-Herxheimer Reaction . ” Later the flights back and forth across the country to a top Lyme specialist back home in California. Later would come the heartbreaking move out of New York so I could be near my parents and doctor, coinciding with an actual heartbreak. Later, the mental confusion, the brain fog, and more fear. Later would come the slow, arduous climb to health. Later would come.
But for now is joy.