What we have once enjoyed we can never lose; all that we deeply love becomes a part of us.
~Helen Keller
I first met Gweneviere on Myspace (yes, that’s how long ago it was). She saw a picture of me dressed in a Borat costume, complete with lime-green singlet, mustache and wig. Bravely (or foolishly), she called me one night. I was just around the corner from where she was out with friends in the East Village. We saw each other every night after that for two weeks, and we fell in love. Soon, we moved in together, and we were as happy as two people could be.
Two years later, in 2008, Gweneviere started having dizzy spells and, later, blackouts. She was diagnosed with a brain tumor — “the size of an orange,” the doctors said. She had surgery, which was successful. But she also suffered a stroke during the operation.
When she finally woke up, she was really confused — not remembering basic things, like what city we were in. The diagnosis was anterograde amnesia, which meant that she couldn’t form new memories that would “stick.” In the early months, she was sometimes on a memory loop of 15 minutes, or even less. She also had something called “confabulations,” where her memories would mix up bits of reality with bits of imagination. We’d laugh about some of these later — like how she thought Barack Obama was a personal friend of hers, when in fact she’d just voted for him. Or how she sometimes thought we’d broken up, and when I’d ask her why we were still living together, she’d say, “I thought we were just cool like that!” It was always delivered with her buoyant, contagious laughter.
Over the next several years, we worked together on her memory and coping skills. That included living every day to the fullest, and making adventures and fun memories out of everyday tasks.
One of the strategies we came up with was to start running and training for a marathon. We had dabbled in running together before, but Gweneviere was never really interested in serious long-distance running.
But after the brain tumor, the idea of completing a marathon took on a different light for both of us. It became one of many symbolic goals that embodied what Gweneviere could achieve in her new reality.
As we approached our goal of running the 2010 New York City Marathon together, Gweneviere’s sense of fun and humor always came through. She was my inspiration throughout our training. We laughed together about how her short-term memory issues helped her run extended distances. During a long training route, she’d often ask me, “How long have we been running?” No matter how many times she asked, I would always answer, “Just about fifteen minutes,” and we would keep going.
When we crossed that finish line on the day of the marathon, she burst into tears when she realized we’d actually accomplished our goal.
Fueled by the success of our marathon training, we set other big goals that Gweneviere was able to achieve. Although her short-term retention of facts and details was still challenged, we found she could learn other skills that used different parts of her brain. We talked about it as an opportunity, literally a “do-over” of her life, to follow the path of what she was most passionate about. Gweneviere was a talented musician and writer, and she was able to complete a degree program at New York University on multiple academic scholarships, attend Juilliard for singing and songwriting, and was accepted to Columbia University’s prestigious MFA in Creative Nonfiction program. We also crossed eight marathon finish lines (seven in New York City, one in Harrisburg) together in those years.
On one cold winter day — February 2, 2013 — I dragged Gweneviere into Central Park for a training run near that familiar finish line. I had spent several months picking out the perfect, unique engagement ring — but I also needed the actual proposal to be really outstanding so she would be able to remember it.
We came to a clearing, and Gweneviere was surprised to see our friend Elaine there — apparently teaching an aerobics class (not something Elaine would ever do). Then the “class” turned around to reveal that they were all our friends, wearing costumes and disguises, and shirts that spelled out: “GWEN, WILL YOU MARRY YASIR?” After stripping off my tracksuit to reveal the original Borat lime-green singlet, I got down on one knee and proposed.
She said, “Yes!” And a little over a year later, on June 14, 2014, we were married on one of the most amazing and happy days of our lives. Elaine (the faux aerobics instructor) was the officiant, with all our friends and family gathered around. And I knew that Gweneviere would always remember that day.
Fast-forward to May 2018. We had just purchased our dream house, a big, two-story home with a yard in the Bed-Stuy neighborhood of Brooklyn. But only a few weeks after we moved in, Gweneviere developed a recurring cough that became persistent. She was diagnosed with stage 4 lung cancer — a very rare form of lung cancer found mainly in non-smokers.
We both thought this was just another hurdle that we would conquer together, as we had with her brain tumor. But it did not turn out that way.
Despite our aggressive efforts to get the best care, Gweneviere’s health went downhill rapidly. We made a road trip to the Dana-Farber Cancer Institute in Boston. We had always loved traveling and having adventures together, and despite the circumstances, we still made it fun. It turned out to be our last road trip.
As Gweneviere grew weaker, I still held on to the impossible belief that we would beat this thing, so I ran an idea by her to create a nonprofit foundation that would raise awareness and provide screenings for both brain tumors and lung cancer. She loved the idea. I was still hoping we’d do it together.
Gweneviere passed away on July 22, 2018, in our new home. She was 47 years old. I was beside her, with many close friends and relatives nearby. Her last words to me were “I love you, too,” and I treasure that memory.
After her death, I felt lost. I didn’t know what to do. I didn’t have a roadmap for grieving. So I fell back to what I always count on: finding good “coaches” (in this case, therapists and friends who had experienced loss), and then setting a “training” schedule. I also started work on our foundation.
Once again, running was key to my healing. I came up with the idea to run 50 marathons in 50 states in a single year — “50 in 50” — to honor Gweneviere, and to raise awareness and visibility for the newly formed Gweneviere Mann Foundation.
I knew from the start that running the races would be the easiest part for me.
When sitting at home on the couch alone, it can feel like there’s nowhere to go but down. But when I’m running, I can work mentally through the hardest and darkest parts of my pain and fear. The repetitive left-right, left-right — the ongoing progress through the miles — allows me to go deep into processing these thoughts and feelings, while always moving forward. I don’t spiral downward when I’m physically moving toward a goal.
Running a foundation is turning out to be more challenging. But I’m surrounded by friends and advisors, and we’re working on building this thing together.
As I write this, I’ve run 12 marathons so far on my road to 50 — nearly one a week. If I get through this year without an injury, I’ll log over 1,300 miles in marathon races — while processing what has happened, thinking about Gweneviere, and honoring her memory on every mile.
I’ll finish the “50 in 50” year at the New York City Marathon in November 2019 — where Gweneviere and I completed our first marathon in 2010. And she’ll be with me every step of the way.
— Yasir Salem —