Last October, science-fiction novelist Jay Lake shit his bed.
Lake, who was suffering from advanced colorectal cancer, had been taking a high dosage of Regorafenib, a drug approved in 2012 by the FDA to halt tumor growth in final-stage colon cancer patients. Its side effects include gastrointestinal distress, and he consistently found himself hurrying to the toilet. On this particular night his bowels cramped suddenly before he had time to react. I know all this not because he told me, but from reading it on his blog.
“I sometimes complain about feeling broken, about feeling compromised and foolish and unlovable,” Lake recounted the next day. “I’m here to tell you, scrubbing shit out of the sheets at 2:30 am is about as unlovable and unsexy thing as a human being can do.”
This sort of honesty, indifferent to propriety or the generally accepted personal boundaries, has been inherent in Lake’s blogging since 2008, when he stumbled into the emergency room panicked by a sudden, alarming loss of blood. Earlier that day he had participated in a book reading to commemorate the publication of his novel, Mainspring; it was cut short when he went to the bathroom and looked down to see that the toilet water was a scarlet red.
When the doctors finally examined him, they discovered two things: He had lost enough blood to warrant a transfusion, and the situation had been triggered by an ulcerated tumor. At the time, Lake was thankful. His doctors told him they had located it early enough in its growth to conclude that remission was not only possible but likely (the tumor was Stage 1 with no lymph node involvement or metastasis).
But, as anyone who regularly reads the writer’s blog soon discovered, the cancer’s persistence proved invincible to both surgical and chemotherapeutic procedures, and it wasn’t long before Lake’s CT scans yielded dark spots that proliferated through his liver, lungs, and other vital organs. Early last year, his doctors, after observing the inexorable encroachment of his tumors, informed Lake that the cancer was now classified as terminal.
The then-48-year-old writer began to prepare himself—and his readers—for death.
…
Lake’s rise to prominence in the science-fiction writing community came relatively late in life. In 2003, when he was on the verge of his 40th birthday, he placed first in the Writers of the Future contest, an anthology series, established by L. Ron Hubbard in 1980, that publishes short stories by new writers in the field.
As if he were making up for lost time, magazine and anthology editors became inundated with Jay Lake stories, and there was a time in the mid-’00s when one could hardly look at a table of contents without seeing Lake listed among the authors.
“He was prolific from the very beginning,” said Tobias Buckell, a science-fiction novelist who shares a book publisher with Lake. “He had an extraordinarily disciplined approach. I know he talked about how he eschewed video games and TV and everything like that and just banked all those extra hours toward his fiction. And the results were very obvious in terms of how much work he put into it.”
Tim Pratt, a speculative fiction writer who’s been close friends with Lake for years, remembers the awe Lake invoked in other genre writers, many of whom were impressed by not only the volume of work but the variance in subject matter and tone. “It was kind of cool because when you burst onto the scene there can be a lot of pressure on you,” Pratt said. “And there’s often some kind of backlash where people will say, ‘he’s overrated,’ ‘he’s too ubiquitous,’ or ‘he should slow down.’ And I think there was some of that, but by and large Jay was so confidant over anything he was doing that he was able to stand up to all of that.”
Soon after his publishing debut, Lake became a staple at speculative fiction conventions across the U.S., instantly recognizable for his long hair and Hawaiian T-shirts. “I realized years ago that there were a lot of badly dressed fat guys in black T-shirts at conventions,” he told an interviewer in 2008. “I figured it wouldn’t hurt to stand out a little. I seem to have succeeded beyond my wildest imaginings, and I’m still not sure how.”
He was known for his extreme extroversion, for being bombastic and prone to rapid-fire speaking with a flair for theatrics. Pratt recalled when he, Lake, and another science-fiction author were nominated for the John W. Campbell Award for Best New Writer in Science Fiction or Fantasy. “He organized this absurd thing where [we] beat each other with pool noodles at Wiscon. It was a Mortal Kombat to see who would win the Campbell, which of course Jay handily won.”
Lake began to amass significant influence and goodwill within the speculative-fiction community. With the help of Deborah Layne, he launched and edited Polyphony, an annual small press anthology that became a magnet for high-profile writers in the field. A Tim Pratt story published in Polyphony 4 was chosen by Pulitzer-winner Michael Chabon for the Best American Short Stories series, a rarity for genre fiction. Lake joined writer workshops and mentored younger writers who were still trying to break into the publishing scene.
“A lot of my own effort has been to helping other people,” he told me last year.
“I’ve given a fair amount of money over the years to help people go to Clarion,” he added, referring to the prestigious writing workshop held at the University of California San Diego campus. “I’ve bought plane tickets, I’ve helped pay tuition. Within the course of the science fiction field that’s oriented toward the personalities of the writers rather than simply the books, I think I had built up a lot of good will just by being present and working to make people’s lives better over the years.”
All this is to say that when Lake announced his initial cancer diagnosis and then began blogging his way through the agony and fear—through the humiliation and pain and terrifying medical revelations that would leave even the steeliest of personalities hopeless and despairing—there were hundreds of people gripped by his struggle, horrified at the thought of losing such a beloved figure in their community.
“I think this is the first generation of writers coming up that were on social media and on blogs and living their lives publicly,” said Buckell. “We were all documenting our attempts to become writers. We were all living openly and Jay lived more openly than some of us, and you put those things together and you get this perfect storm of people who knew him, people who were connected to him online, a generation of writers that’s very online-savvy, and the close knitness of the community compelled you to want to help.”
And help they did. In the six years following his diagnosis, Internet users have donated tens of thousands of dollars, purchased plane tickets, offered up beds to sleep in, and posted hundreds of touching and sometime comedic tributes to raise awareness and money. Since he was a child, Lake has wanted to become a famous writer. In one of my interviews with him he remarked that he appreciated the morbid irony that a terminal illness played a large role in that dream coming true.
…
Reading old posts of Lake’s from 2008 and 2009 through the lens of hindsight is a harrowing experience. Back then he was still capable of hopeful optimism, and the posts are written from the point of view of a man who feels he has dodged a bullet.
May 2008: “I’ll keep blogging about my experiences here, and I suspect I will find most of them funny. I don’t feel very funny right this minute. But life is for the living, and I am alive. Nothing is funnier than that, my little monkeys.”
May 2009: “Spoke to my cancer doc. He tells me that the PET report shows lymph nodes clear. Right now we’re running with the assumption of no lymphatic involvement. That’s huge for me, both emotionally and medically, as it removes the biggest, darkest black hole of fear, pain and mortality from this equation.”
He couldn’t know at the time that the cancer was firmly entrenched, and to read this now, knowing what was to come, fills one with dread. Given the field in which he writes, Lake has no doubt devoted a fair amount of thought to the implications of time travel, and I couldn’t help but wonder, as I combed through the archives of his blog, whether he ever lay awake at night imagining what he would tell himself if he could go back. Everyone is asked at some point in their lives if they could travel back in time to any place in history, when would it be, and while we might delude ourselves into thinking we’d want to go see the pyramids built or watch Abraham Lincoln sign the Emancipation Proclamation, who among us wouldn’t forgo these opportunities in favor of going back and warning ourselves away from our worst mistakes and oversights?
As time wore on, Lake’s posts became more despondent and resigned to a morbid reality. And as he was poked, prodded, sliced opened, poisoned with chemotherapy, incontinent, nauseated, and depressed, he documented it all for his readers. When describing the annals of his treatment, he could be clinical in his description, depicting the minutia of CT scan results or naming off the side effects of a drug as if he were a pharmacist speaking to a patient. His writing was unflinching, at times adopting a kind of black humor when he quipped jokes about his dying. In other instances,when he described what it was like being able to look at the horizon and see his own impending death, it was absolutely terrifying.
He discussed decisions he was making—funeral arrangements, what would be done with his body, who would look after his daughter—all things we hardly consider when healthy but that become imminently important when your final months are upon you. At some point after reading several of his posts, you realize he is walking you through the process of death, a kind of winding staircase that tightens into smaller and smaller spirals until you’re no more.
Lake also blogged his battles with the American healthcare system, taking us through the crippling bureaucracy, the obscene costs, and inefficiencies. His writing is a resounding defense of the Affordable Care Act (ACA), at once making the legislation personal while nullifying the stupefyingly dumb opposition of the GOP. In the midst of the 2013 government shutdown, motivated in large part by Republicans’ last-ditch effort to defund Obamacare, Lake explained how the ACA removed insurers’ abilities to set lifetime spending caps on patients, spending caps that would have otherwise surely already been surpassed by Lake.
“In all the angry conservative rhetoric about the ACA, I have never seen any proposals that would keep me personally alive,” he wrote. “So this furious, unprecedented opposition to a piece of settled law — passed by Congress, signed by the president, litigated to the Supreme Court — that will benefit both me personally as well as tens of millions of other Americans, makes no sense to me either as a matter of policy or as a matter of my individual situation.”
In a tribute to Lake’s writing, the book blogger and critic Matthew Cheney noted how this cemented an otherwise esoteric debate over the law. “We could read a hundred different pundits pronouncing on the good, bad, and ugly of Obamacare,” he wrote. “We could read study after study of what is efficient or inefficient in American healthcare; but without experiencing it ourselves, will we know what it means to have this system, here and now, as one of the most important systems in your life? It is the testimony of Jay’s writing that provides that for us.”
While in the early days of his cancer blogging Lake’s audience mostly consisted of friends and fans within the speculative-fiction community, over time he began to attract a consistent and growing group of readers who knew nothing of his fiction.
“I get a lot more fan mail for my cancer writing than my fiction writing,” he told me.
“There’s a level where that kind of bothers me because I don’t want to be the cancer guy—I want to be the science fiction guy. But there are probably 100,000 regular science-fiction readers in this country while there are two and a half million new cancer diagnoses every year in the United States. And every one of those people has children, siblings, partners, friends, a whole web of people around them who are suddenly standing around and saying, ‘Oh my God.’ And they put things into Google looking for the side effects of certain treatments and drugs, and being a relatively prominent blogger with a long track record, a lot of presence in Google, it’s easy to find my writing. I think a lot of people come to me not knowing who Jay Lake is, not knowing anything about me as a writer.”
Each Jay Lake cancer post attracts dozens of comments, many of which are written by those who face their own mortality or that of a loved one. On a post in which Lake muses what should be done with his body post-death, one commenter wrote, “This has actually started a dialogue with my hubs and kids on what to do with me when my time comes.”
When Lake wrote about his longstanding, uncomfortable relationship with food and what it means to eat “healthy” when you know you’re going to die soon, a cancer patient commiserated, writing, “I’m right with you on this one. If I didn’t have excess weight when I was first diagnosed I don’t know if I would have survived.”
Illustration by Mari Kurisato
At some point, Lake realized that he had, in many ways, become a kind of gateway to the other side for some people, with one foot planted in this life and the other in the next.
“I’ve become a speaker for the dead,” he explained. “People talk to me about the death of a loved one—not even just people who have cancer, maybe it’s a heart attack or accidental death—and they just say the most amazing things to me these days. Some of them are profoundly painful—not to me exactly, but I can feel the pain from the person—and I’ve become, somehow, a safe place for this. I didn’t mean to be a secular priest on behalf of the dead, but having become it, I’m willing to embrace it and am proud of it to the best of my abilities.”
Lake considered himself a strident atheist and had, on multiple occasions, reaffirmed his nonbelief on his blog, much in the same way that Christopher Hitchens, while he was dying of esophagus cancer, felt obligated to take to Vanity Fair to brush away any notion that he’d be tempted into some last minute deathbed conversion.
“Do I need God to comfort me?” Lake asked in 2009. “No. What comfort would an invisible, unprovable assertion bring me? I have family, friends, lovers, co-workers, readers, fans, and random strangers who offer me far more support and comfort than I know what to do with.”
It’s not uncommon for public nonbelievers to dispel the myth that there are no atheists in foxholes, and as Lake retreated further and further into his own foxhole, the smoke billowing through the tunnels and threatening to suffocate him, his resolve remained untarnished.
“I cannot see anything in Faith except the barking of carnies and the psychological needs of a lonely ape long lost from his East African plains,” he wrote, “and so I find my intent and purpose in myself, in my circle of love and friendship, and ultimately in these words.”
…
If any doubt remained as to whether there was a pent-up demand to help Lake, it was allayed in January 2013, when thousands of fans, friends, and otherwise-anonymous Internet users flocked to a crowdfunding site called Youcaring.com and donated a collective $48,655 to pay for the mapping of Lake’s genome. The occurrence was just as much an act of performance art as it was an opportunity to crowdsource funds.
While many crowdfunding campaigns offer up various levels of prizes based on the amount given, the organizers of this particular effort set a number of benchmarks that would unlock various “acts of whimsy,” ridiculous and absurd performances that were offered up by famous science-fiction writers who would put their embarrassment aside and make fools of themselves in Lake’s honor. Within weeks, these acts of whimsy began appearing on the Web, everything from a 3D scan of BoingBoing editor Cory Doctorow’s head to the singing of a Bob Dylanesque version of “Every Rose Has Its Thorn” by science-fiction novelist John Scalzi.
The project stemmed from a series of conversations Lake had in 2012 with his friend Catherine Shaffer. “My background is in biochemistry and I’m a biotech journalist,” she told me. “I had been aware that there had been some cases where people were starting to do whole genome sequencing, looking for some alternate ways to get at the cancer. Maybe it’s an unusual cancer gene that the doctors weren’t targeting. It wasn’t real mainstream. It still isn’t, but at the time it had just gotten to the point where you could theoretically do it for an individual patient.”
Though Lake recognized the potential benefits, he knew his health insurer would never pay for such a procedure, and at first it was relegated to a mere “wouldn’t it be nice if…” dustbin of wishful thinking. But as the cost of genome sequencing continued to plummet, Shaffer began to think that it was worth a try to raise the funds.
She enlisted the help of Mary Robinette Kowal, another writer and good friend of Lake’s, to handle the actual logistics and publicity around the crowdfunding campaign. “I come from a theater background, and I know fundraisers left, right, and center,” said Kowal in a phone interview. She knew the best way to generate a snowball of publicity online was to enlist the help of those with already-established audiences, who would then create the necessary spark to ensure a viral campaign. And adding a performance aspect, she warranted, would only add fuel to the fire.
“My feeling was that as much as trying to raise money, the other thing that this should be doing is demonstrating to Jay how much people cared about him,” she said. “That was why we decided to go with the acts of whimsy. The idea was just see if we could make Jay laugh, then if nothing else came from this then we could at least make things a little bit brighter.”
They decided to give the campaign a month to reach its goal of $20,000. It surpassed that goal in only five-and-a-half hours. “I was out to dinner with my parents that evening and I could see it in real time because it was connected to my PayPal account,” Lake recalled. “So every time PayPal logged a deposit I got an email. I was at one point getting 30 emails a minute from PayPal saying, ‘so and so is donating.’”
Before the month was up he would pull in more than twice his goal. In addition to paying for the genome sequencing, he’d go on to purchase a special chair for alleviating his back and foot pain, as well as plane tickets and travel expenses. “I also committed to passing 10 percent of whatever I raised to other causes,” he said. “So, for instance, [science-fiction writer] Eugie Foster just found out that she has a malignant tumor in her sinuses and was just freaking out about the costs. So I just sent a substantial amount to her from the fundraising pool. I always looked at it as a gift to me from the community, and I needed to use it first and foremost for the reasons it was given to me, but also to give back to the community.”
Last July, spurred by predictions from his doctors that he only had months to live, Lake hosted JayWake, a kind of funeral where friends and family could visit and memorialize him while he was still alive. Hosted at a Portland hotel, over 200 people showed up, many of them flying in from all over the world. Of those who came, about a fourth of them Lake had never met before. They knew him solely through his blog.
“I did not get to interact with everybody; there just wasn’t enough time,” he told me. “Everybody who was there knew exactly why they were there and they all had the same thing to talk about, which was what was happening to me. I think people who know me know I have a multifaceted life, and it was a chance for all the facets of my life to mix and match, at least for a little while.”
At the front of the room, surprising no one who knew of Lake’s penchant for dark humor, sat a black coffin. At one point Lake posed for photos inside it.
Photo by Crystal Black/Facebook
…
In the end, Lake’s final descent was rather sudden and without the introspective closure that I think he maybe hoped for when he lay awake at night imagining his own impending death. For those who had spent nearly half a decade with Lake’s blog, as he walked them through the minutia and pedantry of cancer, some likely wished for a Flowers for Algernon-like decline where Lake, with the realization that he was losing his mental faculties, would pen some sorrowful goodbye, handing his blog off to his loved ones as he entered cancer’s fog. There would be some closing lesson he’d bestow on his “little monkeys,” as he sometimes called his readers, before signing off.
Instead, by the time he learned he was in his final weeks, Lake barely had the energy to eat, much less concentrate on any sort of writing.
The last time I spoke to Lake, sometime in late 2013, I asked him about whether he had considered the legacy he’d leave behind. “I probably think about that more than’s good for me,” he replied. There was the financial legacy he hoped to leave behind for his daughter, who is still a teenager, and also his literary legacy, both in the form of his fiction and his cancer writing.
“Twenty or 30 years from now nobody will remember me except my friends, but that’s OK. In the end, you’re only remembered for what you leave behind, and what you leave behind are your children and the memories of you from the people who knew you.”
With such a long runway before him, Lake had the luxury of time when it came to considering how his cancer writing and online footprint would be preserved. He worked closely with Lynne Thomas, an Illinois-based librarian who has been collecting the papers of deceased science-fiction and fantasy authors since 2004, to ensure that all his blog posts and essays would be saved for posterity. Though this is a relatively uncomplicated task for his blog content, which he unambiguously owned, it gets problematic when you wade into the legal rights of preserving your social media presence.
“You can’t just download Facebook content into an archive,” he explained. “My Facebook and Twitter feeds only arguably belong to me given the terms of service in play. Who owns that content after a person dies is a complicated question. It’s a lot more complicated question than most of us realize.”
In mid-March, after exhausting all traditional avenues of battling his cancer only for the tumors to continue their inexorable advance, Lake embarked on one last-ditch endeavor by enrolling in one of the National Institute of Health’s experimental studies in immunotherapy, a method in which scientists reprogram a person’s own T cells to attack the tumors. The therapy has shown immense promise in early studies, in some cases pulling terminal patients from the brink of death, and I probably wasn’t the only one of Lake’s readers who checked in daily to learn whether the treatment had any effect.
Any last hope, however, was completely deflated when a blog post appeared, written by his friend Lisa Costello, with the title, “Well, the news is not good.” I felt the same as I always did when reading bad news on Lake’s blog: a palpable pressure in my chest and a temporary shortness of breath.
Other friends of Lake described similar feelings whenever they read of some dire test results on his blog. “There are times when I feel like a coward because I know that I have to wait until I’m home or some place private to read one of his posts,” his friend Mary Robinette Kowal told me. “A lot of times I’ll be reading blog posts when on my phone when I’m standing in line somewhere, but with Jay’s blog I have to be alone, because he’s such a powerful writer. He’s not a shy person, and he doesn’t flinch at all from telling you what is happening. On a purely craftsmanship level, he’s excellent at making you feel what the character is feeling, and for the blog posts, the character is himself, and so when your read them the level of empathy that he can create is pretty intense.”
With the news that the immunotherapy had no effect, Lake, by now weak and unable to hold down food, was quickly enrolled in hospice care. Sometime mid-Sunday, while scrolling through my Facebook feed, I saw a flurry of messages posted to Lake’s wall. Bracing for the worst, I quickly checked his blog. “The end has come,” the final post read. “Jay passed this morning, June 1 at 5:45. Lisa and friends were with him. He will be missed.”
The news quickly spread across social media and the blogosphere. As of this writing, hundreds of remembrances and photos of Lake have been posted to his Facebook wall. Writing on the science fiction blog io9, Charlie Jane Anders predicted, “his impact on science fiction and fantasy will be felt forever. His work as an editor, helping to publish new voices in the field, cannot be underestimated. His wealth of short fiction, and the novels he managed to complete, will be around forever … He’ll be missed, but he’ll also be read.”
In his final year of life, Lake worked on what he described as a “death book,” his attempt to encapsulate the totality of his final months. He predicted it would be published by a small press sometime after his death.
“I started talking [about my cancer] on the second day after it was discovered, and I want to continue talking about this until the last day.”
It became apparent, however, that the story wouldn’t stop there, that the goodwill and the readership that Lake had amassed over the years would continue to tell his story well after his final breath.
“I have friends who will step in and write the story for me,” he told me, “or help me dictate the story as needed. They’ll find a way to keep the tale going til the end, and then keep going on after I’m gone.”
I understood what he’d meant as I observed the outpouring of love and grief and scrolled through the hundreds of uploaded photos and tearful anecdotes posted to the Web. Jay Lake tasked his readers with carrying on his legacy, and over the past few days, I’ve watched as his little monkeys mournfully obliged.
Main photo by mcurry/Flickr (CC BY 2.0) | Remix by Jason Reed | In-story photo of Lake by Ruth Nestvold/Facebook