IT WAS November 6, 2018 – Election Day – and threatening rain by the time a New Jersey voter named John Lee arrived at the polls. As Lee made his slow and careful way toward the doors of Basking Ridge Fire Company No 1, a photographer’s flash lit up the gloom. Every few seconds, a burst of light would hit Lee’s face and the blue puffer coat that added significant bulk to his frail body. Voters exiting the firehouse were noticeably intrigued: Was Lee a celebrity? He was certainly being treated like one, with a Washington Post photographer crouched paparazzi-style before him, shuffling backward, clicking away.
Lee, a 49-year-old speech-language pathologist who lives in New Jersey’s 7th Congressional District, is not famous. But he walked the brick pathway toward the polls with a red-carpet sense of anticipation. For him, this moment was deeply significant: He had Stage 4 colon cancer, which meant this election could be his last.
It was this challenging circumstance that had brought me and the photographer out to see him. I had first spoken to Lee in late October at the suggestion of staff from the Cancer Support Community Central New Jersey, where Lee attended a support group. I was hoping to understand how a terminal diagnosis might affect a person’s sense of civic duty. Like others across the country who were voting while facing the end of their lives, Lee might not live to see the long-term effects of his ballot. Would it still matter to him who won or lost?
Given all that Lee was dealing with – chemotherapy, family issues, endless doctor appointments – no one would have blamed him for ignoring the heated national debate that enveloped our country during midterm season. And yet, Lee’s diagnosis 14 months earlier had quite the opposite effect: It had made him more interested in politics, not less.
Before I met him, Lee had become newly – and fiercely – passionate about the need for legislation that covered preexisting conditions. As a man living on borrowed time, he was thinking deeply about the legacy of his vote and the many people it might affect, especially since the congressional race in his district was considered a toss-up. “My prognosis is uncertain,” he told me. “I don’t know how long I’ll live. If I don’t do anything now, I’m wasting my vote. I’m wasting my voice.”
Lee, who is originally from Malaysia, has voted in most major elections since he became a US citizen in 2000. Like many immigrants, he did this out of a sense of duty and appreciation for his adopted country. “You’re given civil liberty and the right to exercise this great honour,” he told me during a phone interview shortly before Election Day. “People have sacrificed, and if we continue to be blasé or indifferent, that’s being ungrateful, in my opinion.”
In Malaysia, Lee’s family was part of the ethnic Chinese minority. According to Lee, his minority status limited the educational and professional opportunities available to him and his siblings. “It’s a complex feeling, being oppressed,” he said. “You [fight to] rise above the oppression, but we had to be realistic.”
Lee’s parents ran a noodle stall in Kuala Lumpur, and he and his siblings were expected to work there every day after school. “A one-for-all, all-for-one concept,” he said. “There was no individualism.”
In 1987, the family immigrated to Brighton Beach, Brooklyn, under the sponsorship of Lee’s aunt. From the moment they arrived, the entire family went to work: Lee’s parents in various factories, and Lee and his three siblings at fast-food restaurants. All of their earnings went into a family pot. He enrolled in community college, studying at night and working during the day. Though he read English fluently, he had trouble speaking it and was initially relegated to remedial classes, even in subjects in which he excelled. Eventually, Lee managed to prove his intelligence; a chemistry instructor was so impressed by his analytical mind that he recommended Lee for a job at Kodak. But that would have required Lee to move to the company headquarters in Rochester, New York, something Lee’s parents would not support. “At 20, I didn’t have the independence to make that decision,” he said.
After he became a citizen at 31, that same lack of independence swayed his decisions at the ballot box. “I was in New York, and people in New York mostly voted Democrat, based on the ads people put up and on TV and radio stations,” he said.
It was only when Lee finally broke away from his family and left the city – first to study medical technology at SUNY Buffalo, then to work in blood banking, haematology and chemistry at a small hospital in Lakewood, New Jersey – that he began considering more conservative points of view, especially about the economy. Lee now frequently voted across the aisle, though, in retrospect, he says he did not feel personally invested in the outcome of his vote or think much about how it might affect those around him. When President Barack Obama signed the Affordable Care Act in 2010, Lee was sceptical. He was especially turned off by the idea of an individual mandate, which required citizens to buy an insurance policy or suffer a penalty. “What happens to American rights?” he thought.
As the 2016 presidential election approached, Lee made up his mind to vote for Donald Trump. A child of entrepreneurs, Lee appreciated Trump’s business background, and he liked Trump’s promise to revitalise American manufacturing and reform the tax code. His scepticism about the ACA persisted. And he didn’t think that Hillary Clinton comported herself much better than Trump. He believed that both sides were smearing each other in equal measure, using the media to advance what he called “half-truths”.
But Lee never had the chance to cast his vote for Trump. In early November 2016, his father was hospitalised for a chronic heart condition. He died on November 8, Election Day. At that moment, getting to the polls was the last thing on Lee’s mind.
On November 6, 2018, Lee woke up feeling like a long-awaited holiday had arrived. The effects of the chemo often made it difficult to get out of bed, but on this morning, his excitement overcame the exhaustion. He had spent more than a month planning for this day. He had persuaded his oncologist to readjust his chemo schedule to make sure that he would be healthy enough to vote. He had then taken to studying the candidates, a little bit each day, since the chemo also tended to leave him brain-fogged.
It was just over a year before, in August 2017, when Lee started having gastrointestinal issues. He didn’t think much of it until early September, when his wife was scheduled for a consultation before receiving a colonoscopy – something her doctor recommended for people who have just turned 50. Thinking he’d like a professional opinion, Lee asked to see his wife’s doctor. “That turned out to be my lifesaver,” he said.
The physician was concerned by Lee’s symptoms and told him to return two days later for a colonoscopy and endoscopy. When Lee came to after the procedures, he saw that his wife was visibly shaken. She’d already received the news: Lee, who was one month shy of 48, had colon cancer. “Maybe it was the power of anaesthesia,” he said, “but I was so accepting of the diagnosis. I was like, ‘OK, what’s next?’ I was calm. I didn’t feel like my world was falling apart.”
That same day, Lee checked into the hospital for emergency surgery to remove part of his colon. “I consider myself fortunate,” he said. “We caught it early, and I don’t have a bag attached to my body. That is a miracle in and of itself.”
Lee was discharged from the hospital only days later and seemed to be doing well. But by mid-October, his liver had become engorged from new tumours that had metastasised from the colon and were occluding an important vein. Lee was taken to the hospital for two major surgeries, one to put stents in the vein and another to remove fluid from the abdominal cavity. He was in the hospital for nearly two weeks before he transferred to a rehab facility. Amid all the chaos, another election – this one to replace Chris Christie as governor – came and went. None of it registered with Lee. “My family was just trying to keep me alive,” he said. “Voting wasn’t even part of the equation.”
For months, Lee was so consumed with his health that he didn’t think much about elections or politics. What eventually brought voting to the forefront was something unexpected: the Cancer Support Community Central New Jersey, an apolitical nonprofit, where Lee had begun attending frequent support groups, wellness classes and nutrition workshops. The more deeply involved Lee became in this community, the more his vote – and the lack thereof for two years running – began to weigh on him.
CSCCNJ is housed in a 1760 farmhouse, at the edge of a sleek medical complex in Bedminster, New Jersey. With its creaky floors and crochet pillows stitched with pseudo-comforting affirmations the vibe is homey and relaxed. The space seems much too small for the vast number of activities on offer – from pet therapy to cooking classes for kids whose parents have received a diagnosis.
Lee has been coming here since he discovered the place online shortly after his diagnosis. According to Amy Sutton, the organisation’s CEO, this is highly unusual. Most people have to be coaxed into seeking out this kind of support, because doing so is an acknowledgment of how fundamentally their lives have changed. They are no longer just part of the general population; they are part of the cancer-affected population. In the face of this, the organisation tries to help people achieve as much normalcy as possible. “This is about people living in the face of a cancer diagnosis,” Sutton said. “Life doesn’t stop; it just gets more complicated.”
In addition to his regular participation in an advanced-cancer support group, Lee is also on the Participant Advisory Council, which represents clients’ interests and needs internally and educates the public about the organisation’s work. The month before the midterm elections, Lee and a fellow member of the advanced-cancer group gave speeches at CSCCNJ’s annual gala fundraiser. They were, he says proudly, the first people in active treatment for cancer – as opposed to a board member or CSCCNJ representative – to be invited to address the donors.
Over the past year, Lee’s battle with the disease, coupled with his active role in the cancer support community, has profoundly reshaped his worldview. It’s not the first time that personal circumstances have caused Lee to rethink his priorities. He has two teenage children with autism and, largely because of them, he returned to school at 38 and became a speech-language pathologist and advocate for kids with special needs. But cancer was different. In the face of a terrifying diagnosis, the support community became an existential lifeline. It saved Lee from drowning in his own despair, because it gave him a mission: to help pull others out of their own darkness.
“The more I participate, the more I realise this is where I belong,” he said. “This is who I am now.” The communication and empathy fostered in this small house, he explained, showed him “the core of what makes us human.”
For months, Lee listened to men and women with advanced-cancer diagnoses discuss their struggle to access health care and pay for their medications – what Sutton calls the “financial toxicity that follows people with a cancer diagnosis.” At first, none of this struck him as overtly political. These were immediate, practical problems that members of his community were facing. But after a while, especially as the midterm campaigns ramped up, Lee could no longer ignore the political implications.
“Can you imagine if [the government said], ‘Sorry, you have a preexisting condition. We can’t cover you’?” Lee shook his head. Dying “doesn’t scare me anymore,” he said. “What scares me is a law that takes away our rights as American citizens or New Jersey residents and limits access to health care. I don’t want America to go into a Hunger Games [scenario] where you fight for your own survival.”
Before Lee had gotten sick or knew people without insurance, American rights had meant the freedom to opt out. But there was no opting out for Lee now. Cancer was a four-storey building, he said, and once you reached the top, “it’s not like you can go back to the third floor.” Lee wasn’t just thinking about how a lack of health care could conceivably affect his own prognosis. He was embedded in a community of people who were suffering, some of whom didn’t have great – or any – insurance. From this vantage point, how could you talk about the American right to liberty if the country fell short on its first promise: life?
“Taking our voice, our ideas, our ideals and collectively what we have to say and translate that into a goal, a plan, a programme – let’s get it going,” he said. “I don’t know my schedule next week. I don’t know how long I’m going to live, but as long as I have this energy, I will give back.”
Lee’s family did not expect the cancer diagnosis to ignite such passion in him. “The moment he had that diagnosis, one thing came back in almost every conversation,” said his older brother, Hing Foo. “John wants to do as much as he can, contribute to his community, share his views. There are four of us siblings, and we were looking at each other like, ‘Where did this come from?’ “
Even before I contacted him, Lee had been eager for a platform to share how cancer had changed his perspective. It’s why, among all the people involved with CSCCNJ, Sutton and her staff had pointed me to him. His brother agreed. “I think his dream is to be a talker and give a speech before the people at TED,” Hing Foo said.
Lee’s model in this regard was Chesley Sullenberger, the heroic pilot who managed an emergency landing on the Hudson River. “Captain Sullenberger used to call himself a regular Joe,” Lee would tell me shortly after voting. “Then all of a sudden, he had some celebrity status. And he said, ‘I’m going to make good use of it.’ “
In New Jersey’s 7th District, the Republican incumbent, Leonard Lance, had voted to repeal the ACA. Lee was also increasingly frustrated by Trump’s lack of empathy – precisely the opposite of what he experienced weekly at CSCCNJ. In 2016, he’d found Clinton and Trump to be equally hostile and petty as presidential candidates. Now, he felt the President and his congressional supporters were making that Hunger Games scenario a reality.
Lee said he missed John McCain, who had died of brain cancer 10 weeks before. Sitting in his usual chair at CSCCNJ on election afternoon, he spoke with emotion about the former senator: how McCain’s father had tried to get him out of prison in Vietnam and how McCain had refused to leave unless his men were also released. “Being a true leader means not just caring about yourself but the people you’re with and under you,” Lee said, his eyes tearing up. “[It’s] that self-sacrifice.” Now, he said, “we have someone in power saying: It’s for me, by me. All by me.” Lee saw the midterms as a referendum on precisely this: Were we a nation of “me” or a nation of “us”?
Lee knew he could have saved himself some of the trouble and voted by mail. In fact, one of his friends from CSCCNJ had chosen this route as a safeguard. But Lee felt it was important to go to the polls in person. The very act of presenting oneself was a statement, he explained, a demonstration of your identity as an American and your belief in the democratic process.
Around 3pm, after Lee had spent the day working with his students, he and I drove to his polling station. The car wended through the wooded roads of Basking Ridge, the wealthy suburban neighbourhood where Lee and his wife had bought a fixer-upper back in 2013. The November foliage was beautiful and bright against the darkening sky, but Lee’s thoughts were a world away. He was telling me about Brent Taylor, the former mayor of North Ogden, Utah, who had been killed while serving in Afghanistan just days before the elections.
“He wrote on Facebook about the throngs of people who showed up to vote and had their fingers printed,” Lee said of the local elections where Taylor was stationed. Lee had found the description awe-inspiring. “A sticker is transferrable. But an inked finger speaks of a more pronounced dedication.”
We were now driving alongside a cemetery adjacent to the firehouse, but Lee didn’t seem to notice. We arrived and parked. As we sat in the car, the conversation turned to the President. “I really have to thank him,” Lee said of Trump. “Him being true to himself has energised this country.” He was joking – sort of.
Despite Lee’s desire for a platform, he had initially balked at the idea of sharing his candidate choices on a national scale. “Isn’t that private?” he asked, incredulous, when I first approached him. Given the partisan nature of the electorate, he worried that talking about candidates – instead of just the issues – might cause people to ignore or reject his arguments out of hand. But a few days later, he changed his mind. He’d come to realise that sharing his vote, however uncomfortable, was central to his mission. His friends at CSCCNJ deserved no less.
“I would love to hope that my vote continues to benefit my family or neighbours or the state in the long term,” he’d said after he made his decision to talk with me. “It’s no longer about me anymore.”
We arrived before the evening rush, and Lee was able to check in right away. He had worried about the physical strain of waiting in a long line. Instead, within moments he had signed his name and cast his ballot for Tom Malinowski, the Democratic challenger. It looked almost anti-climactic. But then, after emerging from the curtain, Lee ran into a friend. The man had heard that a Washington Post photographer was coming by the firehouse and was curious to see why; he didn’t expect to find Lee at the centre of the story. Lee, usually modest, was elated to have been recognised, to be able to savour the experience a moment longer. Sharing his story with his friend – and explaining that it would soon be on the record for thousands of others to read – was his version of the fingerprint.
It was raining by the time we left the firehouse, and Lee hurried back to the car. I asked how he was feeling. “Euphoric,” he said.
Half an hour later we pulled into the CSCCNJ parking lot. It was now fully dark, and we were both reluctant to step back into the rain.
“I’ve done something good today, and I can live with it and sleep well at night,” he said. “That counts more than any other treatment – more than chemo. It’s a huge weight off my shoulders.” Thus fortified, he climbed out and headed toward the centre’s warmly lit windows. – Text and Photos by The Washington Post