New Museum Director of Exhibitions Management, Ian Sullivan, on What His Son’s Brain Tumor Diagnosis Taught Him



Every day we juggle. Maybe your version includes checking your phone as you power through lunch, or switching between 10 browser tabs strung across your laptop. If you’re a freelancer, you know about balancing assignments. That’s where Ian Sullivan, Director of Exhibitions Management at the New Museum of Contemporary Art in New York City, picked up his multitasking skills. Years of managing fulltime work at a museum alongside freelance exhibition-designer assignments made him fluid in this art. He never expected it would help him navigate the worst period of his life.

The initial balancing act for the California native began in July 2013, when his wife, Alexa Wilding, gave birth to twin boys, Lou and West. At the time, Sullivan was a dark-haired, punky exhibition designer at Bard Graduate Center Gallery who was partial to vintage western shirts. Wilding, a striking, pale-skinned and fine-boned musician, was a darling of the downtown folk rock scene. With her soft voice and ’70s vibe, she was referred to as “a neo Stevie Nicks” by The New York Times. They were a beautiful and unique family.

Almost a year after trading boozy brunches for milky burp cloths, and late-night rock shows for the cacophony of the wailing brown-eyed twins, life leaned in another direction. Lou stopped nursing, and he couldn’t hold food down. He woke frequently in the night. Multiple visits to emergency rooms yielded misdiagnoses but no real solutions.

It wasn’t until a new pediatrician decided to measure Lou’s head that the cause was discovered: a brain tumor. After surgery, the doctor determined it was an extremely rare and aggressive form of cancer that affects only two or three children in the United States a year.

I needed certain things to remain as normal as possible in order to feel like life was moving forward and not stopping.

“I recalled hearing a lot of different numbers and trying to make sense of it all, as if I could solve this math problem and find a positive answer,” says Sullivan. Per the recommendation of the oncologist, Lou underwent six months of in-patient, high-dose chemo and stem cell replacement therapy to make sure the brain tumor was completely gone. The couple traded their cozy New York City apartment for eight-day cycles in isolation with Lou at NYU Langone Medical Center, where they wore masks, gowns, and gloves and had to disinfect everything brought into and out of the room.

But when you’re going through hell, sometimes what propels you forward is simple. The momentum of their busy lives and a healthy child didn’t allow time to pause and feel sorry for themselves, Sullivan says. “I needed certain things to remain as normal as possible in order to feel like life was moving forward and not stopping,” he says. “With the treatment, Lou would be out for a few weeks, and we had to pretend like things were okay. We had West at home, so we just kept on that rhythm.” They divided and conquered, making sure there was always one parent with each child – or at the very least, a relative with West at home when both parents were needed at the hospital.

Of course, there was also work.

Wilding chose her music as a refuge. The singer-songwriter wrote an entire album on a toy piano that she borrowed from the playroom at the hospital. “The crazy thing is, while we didn’t get to sleep a lot of the night, there was this window from 7:30 to midnight that we wouldn’t have had at home,” she says. “It was weird, because I suddenly had alone time. Lou was out on morphine. It was horrible. But I thought, ‘I can crumble and feel like the world is over, or I can make the most of this time.’ I remember feeling guilty and miserable, but I knew that I had stuff to do.” Her album, Wolves, was released in July 2016.

I was working with horse blinders on while I designed this exhibition bedside from a children’s cancer ward.

Sullivan used this time to focus his energies at Bard. “I was working with horse blinders on while I designed this exhibition bedside from a children’s cancer ward, and all the while giving the project the time, attention, and design sense it required.” says Sullivan. “Somehow.”

Adopting his familiar “freelance mode” of focused multitasking made it possible. Over his career, Sullivan has produced exhibitions and environments worldwide, from the prestigious 55th Venice Biennale to the critically acclaimed “Hats: An Anthology by Stephen Jones” in New York and special projects in Beirut, Qatar, and South Korea. All while holding a full-time job. The months during Lou’s treatment proved trickier because it required physical time away from the office. Sullivan divided his work time into about 50 percent in office and 50 percent out. “Logistically, I just had to schedule my time so I’d make meetings at certain times,” he recalls. “Thankfully we live in an age when your phone keeps you connected.”

The image I have of Ian at this time is of him in a plastic hospital gown, with Lou sleeping and him designing on his laptop.

Before Lou’s diagnosis, there were a number of challenging projects in the exhibition schedule, and Sullivan was looking forward to broadening his design skills to include costume display and textile conservation. In particular, they were in the planning and early design phase for a historical exhibition titled “Fashioning the Body,” on tour from the Musée des Arts Décoratifs in Paris. At night, he’d stay next to Lou as he slept and work in the dark with a laptop and a hospital rolling tray table. The opening on April 3, 2015, at Bard Graduate Center coincided with Lou’s completion of his chemotherapy treatment and the end of the family’s part-time residence on the ninth floor of the hospital.

“The image I have of Ian at this time is of him in a plastic hospital gown, with Lou sleeping and him designing on his laptop,” recalls Wilding.

Luckily, the Bard Graduate Center in New York, where Sullivan worked for more than a decade, was sympathetic and even helpful. “My boss was like family,” he says, still appreciative. “We lived in Bard Hall, and they gave us an apartment free of charge for family so they could be close and help out. They were so incredibly generous.”

Sullivan’s former boss, Nina Stritzler-Levine, gallery director and director of gallery publications, found that he continued to flourish creatively. “Ian managed three very demanding projects,” she says. “Every exhibition he designed elevated the practice of display. He did not let up on that objective.” She recognized his performance and promoted him to associate gallery director in July 2015.

If you’re lucky enough to get through a crisis, with distance comes perspective, and with perspective you fashion tools for your everyday life.

It all seems kind of incredible, considering that in addition to focusing on his day job, Sullivan was also working on exhibition design projects outside of BGC. He was freelancing for Massimiliano Gioni, the artistic director of the New Museum, on a curatorial project at the Nicola Trussardi Foundation in Milan, Italy. “The Great Mother” opened in August 2015, and it was featured in design reviews during the latter half of Lou’s treatment.

His work with Gioni on larger-scale projects outside of the New Museum, starting in 2009 with the Gwangju Biennale in South Korea, led Sullivan to his current position, which he began in 2017 after Lou’s health stabilized.

Today, at the New Museum, Sullivan oversees a department of seven full-time staff members, while managing the entire exhibition production schedule. This includes artwork fabrication, construction, installation, and the eventual deinstallation and dispersal of loan works back to lenders and other museums.

Life at home is less structured. If you visit Sullivan and his family at their home in Irvington, New York, these days, the proverbial welcome wagon meets you at the elevator. Now five, sandy-haired Lou and West play in the empty hallway, turning the carpeted area outside the elevator into a creative space for greeting guests enthusiastically with traffic cones on their heads or performing impromptu one-act plays with a miniature puppet-show stage.

What I learned from that whole process is the importance of advocacy. I learned how to advocate for myself.

There is palpable warmth and love in their airy apartment that overlooks the main street of the Hudson River town. Standing in their kitchen, Sullivan looks like a cool suburban dad, with rimmed glasses and tattoos peeking out from under his wool sweater. He drifts in and out of conversations with the adults in the room and playing with the carefree boys. You almost wouldn’t know that Lou beat cancer three years ago.

But if you’re lucky enough to get through a crisis, with distance comes perspective, and with perspective you fashion tools for your everyday life. 

Wilding is articulate about her hard-earned lessons. “What I learned from that whole process is the importance of advocacy,” says the musician, who, with Sullivan, had to push for everything from an in-room refrigerator to a private room during their lengthy hospital stays. “Not only as a mother for my child, but I learned how to advocate in a way that I wasn’t naturally good at. I learned how to advocate for myself.” The New York native is working on a book of essays right now, and she says these skills have actually helped her navigate the process.

For Sullivan, it has put his work-life balance in perspective. “I’m much more conscientious than before of my time away from home, whether it’s working later in the day or on weekends,” he says. “I just want to be home and with the boys more, and work can take a backseat more often than not. I still feel we are making up for lost time spent in the hospital.”

There’s another mantra they learned and continue to abide by every day. It’s the advice their surgeon gave them early into Lou’s diagnosis. “All I remember is looking at the surgeon and asking, ‘What do I do?’” says Wilding. “And he looked at me and said, ‘You’re going to be very, very brave.’” So they were.

And they still are.





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