20 Years of Me and the Word

This month it's twenty years since I heard the word.

August 2006. There's no way to mark an anniversary like that without it sounding like something, and I've noticed the shape people expect from it, the gratitude and the little bit of hard-won wisdom and the photograph where you look well, because the story has an approved ending and the approved ending is that you lived.

I did live. The word was cancer, and I'm not being coy about it, and I'm not going to pretend the number is anything other than remarkable, because my doctors have told me plainly that I've outlived every statistic that exists for my disease. Twenty years isn't something I was ever given odds on, it's just something that happened, and I've spent two decades trying to work out what it cost. But this isn't an essay about surviving, it's about what happens when your survival becomes a story and the story stops being yours.

Every few months my phone starts behaving strangely.

It starts with the DMs, four or five strangers in an hour and then more, and they're from everywhere...a woman in Nairobi whose brother has six weeks, a man in Surrey asking for the name of the doctor, someone in Hyderabad who has already booked the flight and just wants to know where to land. They come in faster than I can read them and they all carry the same tone, which isn't curiosity, it's the tone of somebody who has run out of options and been handed one.

By the time a friend forwards me the link I already know what it is, because it's always the same article, it ran in August 2015, and it's the worst thing anyone has ever written about me. I've made peace with almost everything that happened to me but I've never made peace with that piece, and I've stopped pretending that's a character flaw.

I never set out to be written about, I set out to write.

Before any of this I was working in fiction and in scripts, which is to say I spent my twenties inventing people and putting them through things, and if you'd asked me then how I imagined attention arriving I'd have described a byline. Something I made, my name under it, a reader on the other side who never needed to know a single thing about me. That's the deal writers think they're signing, that you get to be the one holding the pen. I never really considered the other way in.

Holy Cancer: How A Cow Saved My Life came out in July 2015, a memoir about two rounds of cancer, the second at stage IV, and about the months in India that followed. The title isn't a metaphor, and the circumstances behind it are ones I've never once claimed could be repeated, and the book is careful about that to the point of being almost annoying, because I knew even then what happens to a story like mine once it leaves the room.

It found its readers quickly, the way books occasionally do when they land at the exact moment a culture is hungry for what's inside them, and within weeks I understood that the attention wasn't landing on the writing at all, it was landing on the body the writing described. Nobody was calling to talk about structure, they were calling because I hadn't died. That's the moment worth marking, and it isn't the success, it's the redirection, because I'd spent years learning to be the author of stories and I'd just become the subject of one.

She was given a copy of the book, which matters, because it means what followed wasn't a failure of access.

The piece was written from the meeting, and it was written to a shape. The book was careful while the article was loud, the book refused to make a claim and the article implied one, and the frame she chose was precisely the one I'd spent two years of writing steering away from, the frame that turns a body into an argument about something other than a body. Comments of mine turned up without the sentences that had surrounded them, which is a technique and not an accident. The newspaper's website went down the day it ran, which is the part people still repeat back to me like it's good news.

I called her, and I wasn't aggressive about it and I wasn't naive enough to expect a correction, I just explained what the framing had done and what the missing context did to my meaning and what it was going to cause. She told me that was her job.

She was right, and that's the sentence I couldn't say out loud for years and it's the reason this is an essay instead of a complaint. She was doing her job, and the job includes the right to decide what the story is, and the subject doesn't have that right and never has had it. I'd simply never been the subject before, so I'd never noticed which side of the table I was sitting on, and I found out in a single afternoon that a byline is authorship and a story about your own life is raw material for somebody else's.

Nobody warns you that a piece like that doesn't end.

It's been eleven years, and the article has no news value and no currency and no relationship to anything happening anywhere, and every few months it detaches from its date and starts moving again through WhatsApp groups, forwarded from someone to someone in countries I've never worked in. I have friends around the world who've received it from strangers without realizing it was about somebody they actually know. It circulates without me and it'll outlive my ability to correct it.

What comes with it is the part I've never fully described. Desperation first, which I understood immediately and have never once resented, and then the follow-up when I couldn't provide what the article implied I could provide, which is anger, and the insistence that I owed them a phone call or a name or a protocol. And then, from a small number of people, wishes that it would come back, explicit ones, death threats from people who were themselves dying or whose mothers were, which is a category of correspondence I wouldn't wish on anybody and have never known how to file.

I tried for years to meet it. I answered, I made introductions I had no business making, I gave people hours I didn't have, because the alternative was ignoring a message from someone with six weeks and I couldn't do that and also be a person I recognized. It was never enough and it was never going to be, because the thing they were reaching for didn't exist. Somebody sold them a cure and it wasn't me...I wrote an entire book explaining why what happened to me couldn't be handed to anybody else, and none of that survived the translation into a headline.

Then there's the other correspondence, the kind that arrives on letterhead.

Industry titans, entertainment names you'd recognize, chief executives, and it's their wife or their father or their business partner and could I find twenty minutes. I found the twenty minutes and then the hour after it and then the follow-up calls, because a frightened person is a frightened person no matter what they're worth. I was running a nonprofit through all of this and not one of them ever wrote it a check, and it's taken me a long time to sit with that, because these are people whose entire professional lives are organized around the principle that time has a price. They knew exactly what my hours were worth, they just didn't file what I was doing under work.

What they did file under work was the other thing. The blue tick arrived, the influencer label attached itself, and with it came an entirely different inbox...wellness brands, spas, resorts, would I come and stay, would I be seen there, would I say something about it afterward. Medical groups wanting a keynote. More than one proposition to put my name on a hospital or a clinic or a line of products.

I want to be exact about the arithmetic here because it's critical. The people who wanted my expertise took it for free, and the people who wanted my image paid for it, and paid well, in the currency of things you can photograph. I've never once been compensated for the thing I'm actually qualified to do, and I've been compensated repeatedly in massages.

The other cost of a few minutes of fame is that you can't put them down.

People see you the way they decided to see you and they decided fast, and what they don't see is anything on either side of that decision, not the career before it and the writing and the scripts and the years of craft that produced a book good enough to be misread on that scale, and not the capacity after it either, the work I could be doing now, the ideas I've spent a decade building. You become a fixed point, and people aren't being cruel about it, they're being efficient, because a person is easier to handle as one thing.

At first I didn't fight it. I wrote for The Speaking Tree and for HuffPost and the work sat comfortably inside the same narrative because that's honestly where I was, and then the bylines started to widen...fashion, travel, luxury, music, film, hotels, rooms I had no business being in and got very good at being in, across continents, under my own name, for years. None of it moved the label an inch, and I was still the cancer guy, filing a piece about a hotel.

Some of that is structural and I own it, because I haven't had a job in twenty years, not one, no tenure and no department and no colleagues I've sat beside since we were all young, none of the slow institutional scaffolding that gives a person an identity sturdy enough to argue with a headline. Working for myself was never a lifestyle choice, it was a medical one, it's the only shape of work my body has ever been able to hold, and it was the right call and I'd make it again...and it also, quietly, kept me tethered to the word for two decades, because I never got to build anything else large enough to stand in front of it. Which is why coming back to academic work has been harder than the academic work. The ideas are fine, the ideas were always fine, what I don't have is the twenty years of institutional biography that lets people take the ideas seriously without checking on me first.

And in the years since, an entire industry has made money out of being that one thing on my behalf. Healers, retreats, supplement companies, practitioners, some of them using the book and more of them using the article, because the article already made the claim they needed. They sell the protocol and the product and the replication, which is the precise thing my book spends its entire length refusing to sell. My story generates revenue, almost none of it mine, and the people earning it are under no obligation to be accurate because accuracy was never the asset. The asset is a man who didn't die, and a version of why.

I built a framework for measuring the economic value of fame and it has four terms, Base Visibility Score, Cultural Momentum, Value Longevity Factor and Legacy Control. People ask me about the first three, they ask about the math, and in all this time nobody has ever asked why the fourth one is in there.

Legacy Control is in the model because I lost mine in August 2015 and never got it back, and it's a separate variable because it behaves differently from the others, since visibility can be earned and momentum can be manufactured and longevity can be estimated, and control is the only one that can be taken off you in a single afternoon by a professional doing her job correctly.

Value Longevity Factor is in there because I can watch an eleven-year-old article generate measurable activity in real time and I know it's happening before I ever see the link, because the messages arrive first, which isn't a theory about persistence, it's a notification pattern. And Base Visibility Score is in there because visibility isn't a compliment, it's a quantity, and other people can spend it.

Every entity I've ever scored, every athlete and studio and franchise and brand, I've scored from the position of somebody who was once, briefly and unwillingly, a small unit of the same currency. I'm not analyzing fame from the outside, I was handed a low-grade dose of it and watched what it did to how I was seen and valued and paid, and then spent years building the instrument I wish somebody had shown me first.

Run the model on me and it isn't flattering. Base Visibility is low and always was, Cultural Momentum is real but narrow and spikes on a schedule I don't set, Value Longevity is genuinely strong which is the cruelest of the four findings because the thing with staying power isn't the book, and Legacy Control is close to nothing, and I didn't lose it slowly, I handed a stranger a copy of my life and she chose the story.

And here's where I've arrived on that, twenty years in. Whatever else I turn out to be, I know a meaningful share of my legacy is going to be Cow Man, not the framework and not the criticism and not the bylines, the cow, and I stopped fighting that a while ago and I'm genuinely okay with it, because there are far worse things to be remembered as and at least that one is true.

None of which is a complaint about journalism, it's a description of a transaction I entered without understanding the terms, and it's the same transaction almost everyone I've ever scored entered too. The difference is that most of them had representation.

But here's the thing about that article, and about the book, and about every version of me that circulates without my involvement...they all end in 2015.

When you write a book about recovery, readers assume the recovery is the last chapter, because that's what a last chapter is for, and the people forwarding that link are forwarding a man who got better. They're not wrong about him, he existed, he just hasn't been the current version for a very long time.

My body has never stopped being the central negotiation of my life, and long-term survival isn't the back half of the same story, it's an entirely different discipline, and almost nothing gets written about it because it has no shape. There's no arc, nobody beats anything, you just keep going and the terms keep changing, and the further out you get the fewer people there are ahead of you on the road. There's a lot happening with me right now. The care that existed twenty years ago, the urgency and the team and the protocol, all of that thins out as the years pass, and nobody is following a plan for me because there's no plan to follow.

I've outlived every statistic that exists for my disease, which sounds like a triumph until you understand what it actually means, which is that the statistics stop where I kept going, and there's no map past the edge of the data, and I've been walking around out there for years.

And I can't really say any of that out loud, which is the last turn of the knife, because the moment I raise it I watch people's faces do the thing... cancer again... and it isn't, and somehow the fact that it isn't makes it harder to talk about, because there's no word that makes people sit up the way that one does. There are things as serious as cancer and as frightening as cancer that don't come with a ribbon or a month or a fundraising walk, they come with a shrug. So mostly I don't raise it, and the silence gets read as being fine, and being fine gets forwarded to a stranger in Nairobi as evidence.

The article will circulate again, probably before the year is out, and I'll know before anybody sends it to me because the messages always arrive ahead of the link and eleven years has taught me what the first four look like. Somebody's brother, somebody's mother, six weeks to live.

I still answer when I can, especially when drafted directly by a patient, not because I have anything to give them but because there's a real person on the other end and the least I can do is be a real person back. That's all I ever had, it was never a cure, and I never once said it was.

Twenty years since the word, eleven since the article, and the man in that piece has been out of date for over a decade and he'll keep being forwarded long after I've stopped being able to correct him. Only one of those stories did I get to write myself...and this is the other one.