Was TrappedAtMyDesk, the Tragic Brain Cancer Victim, Another Web Hoax?

Regular denizens of these parts surely remember a recent installment of “Your Evening Cry” that we subtitled “A Life Told Through Twitter”—it was a subtle, lingering gut-punch of a video that chronicled (via a slideshow of her Twitter feed) a woman named Amanda’s tragic battle with brain cancer. The story was compelling, simple, and neatly packaged. Naturally, it went viral.

But, as it turns out, much like Diane in 7A and Manti Te’o’s ill-fated girlfriend and lonelygirl15 and horse_ebooks and all of these people, Amanda’s story might not be exactly what it seemed. Jennifer Mendelsohn at Medium got curious about Amanda’s background—why hadn’t we seen any follow-up pieces about her family, her legacy, the absence she left in the world? Viral stories about loss and unjust heartbreak are ripe for multiple rounds of human interest stories—today’s blogosphere doesn’t just let those opportunities lie fallow.

We knew from her Twitter feed that Amanda had a brother and coworkers and a community of goth friends in Ottawa; it seemed strange that no enterprising click-seeker had tracked them down, that not one of them had appeared in comments, that there was no public acknowledgment of the outpouring of support. But, on the other hand, aren’t people allowed to protect their own privacy? Can’t people reserve the right to deal with grief in their own way, and to reject the idea of their family tragedy being made into an international spectacle in which they are required to participate? But on the other other hand, is it really realistic to imagine that every single person who ever met Amanda had the exact same instinct to keep quiet?

Mendelsohn’s piece is a fascinating and humane story—it reads like a mystery—delving methodically into all of these questions and many more. Amanda’s Twitter feed goes back years and is suspiciously, consistently mundane. Who would invest that kind of time in a long-con off of which they would never personally profit?

The most compelling section of Mendelsohn’s investigation concerns Amanda’s diagnosis of glioblastoma multiforme. Having experienced the death of someone very dear to me from glioblastoma, something did seem a little strange about the rapidity and simplicity of her decline. Basically, Amanda gets some weird test results back, goes to see a specialist, is immediately diagnosed, and is dead in three months.

Here’s Mendelsohn:

Can you really first find out you have a malignant brain tumor from a wonky result on a seemingly routine test? Would someone really not expect a call to tell them they don’t have a brain tumor? I called a neurosurgeon, Dr. John Sinclair of the Ottawa Hospital, precisely the kind of “specialist” who would deliver such news. According to Sinclair, a patient ultimately diagnosed with glioblastoma multiforme (GBM), would first have an MRI or CT scan ordered in response to something like a seizure or neurological problems. (Were these the “bad test results” Amanda referenced?) Upon being referred to a neurosurgeon, a patient would next undergo more comprehensive brain imaging studies. While those images might be suggestive of GBM, the only way to confirm the diagnosis is through pathology: a sample of the tumor must actually be removed from the brain, either through a biopsy or during surgery. The entire diagnostic process typically takes seven to fourteen days for outpatients, he says; pathology results alone can require a five-to-seven-day wait.

And yet Amanda first receives the unexpected, unnamed “bad” test results on the 15th from what sounds like her primary care doctor. Somehow, just three days later, she sees a “specialist” who confirms GBM on the spot at her first appointment. The chronology is “highly unusual,” says Dr. Sinclair. “That would be logistically hard to complete.”

Despite her apparent youth, Amanda seems to have made the unusual decision not to treat her tumor, apparently since she was given only three months to live. (With treatment, the prognosis for GBM is around fourteen to sixteen months, says Dr. Sinclair.) And so she quits her government job, wondering “if [she]’ll get [her] pension money,” and tries to figure out what to do “for the rest of [her] life.” The answer, apparently, is to travel.

What’s truly “amazing” is that a young person three months away from dying from an untreated brain tumor that Dr. Sinclair says causes “a very devastating progressive neurologic decline” —one with the potential to render her incontinent and in need of help walking—would be so eager to travel to exotic places like Honduras and Nicaragua, especially without a phone.

I’m sure every case is different, but my memories of death from glioblastoma involve stark cranial stitches, slow neurological decline, gradual loss of sight and speech and memory, surgeries and pharmaceutical intervention, and months and months in bed. There was no wild Nicaraguan vacation and then instant, punctual death. That’s movie cancer. Real cancer is messier. Usually. There are always outliers, of course.

So what’s the point of digging around in this stuff? Can’t a nice thing just be a nice thing? And who’s to say Amanda didn’t simply withhold certain details of her identity, diagnosis, illness, and death? She doesn’t owe the public anything. Well, here’s Mendelsohn again:

Is the world palpably different if a million people watch a sad YouTube video about a dying woman’s Twitter feed and mistakenly think it’s real? Of course not. But unreliable information goes viral regularly, because so few people pay attention to the provenance of the things they “like” and “share” at lightning speed on social media. At what point in the life span of these tall tales that pass as “news” are we allowed to care about their veracity? At what point does the accumulation of all these insignificant falsehoods we now traffic in become, well, significant?

The truth might not matter in this individual case, right now, but it’s going to start mattering on the internet in the long run.