pieterh wrote on 10 Dec 2015 11:35

On December 10th 2010, I didn't start to die. Instead, a surgeon opened me up, and removed the cancer that was spreading rapidly through my bile duct, to my lymph nodes and pancreas. I survived the surgery, a resistant infection, and chemotherapy. So far, so good. Today I celebrate five years of extended life with a personal article.

About Me, Really

I don't often write about myself, except when people demand it. I'd much rather people looked at my work than my biography. Still, some stories are worth telling. One of them is the cold horror of your own body trying to kill you. Cancer is scary. A close friend asked me not to kiss on the cheek, as we do in Belgium. "I don't want to risk getting it," she said. "You know I've got a young baby." We still speak, though less often than before.

How does one survive cancer? It's simple and unfair: one does not die, yet. We all die eventually, which is a good thing. Death is the Great Garbage Collector. Yet we go through extraordinary effort to not die, yet. For me, that meant letting my Congolese surgeon Dr. Mbote and his team slice me open, remove half my pancreas, lymph nodes, duodenum, bile duct and gall bladder, and lower stomach valve, and then reconnect the pieces in a Rube Goldberg operation lasting twelve hours. Google "Whipple procedure" if you want details.

I woke up wrapped in the evil ancestor of all pain. I can't describe it. Near my hand was a small trigger to push, to get a small dose of pain killer. Normally, ten or twenty times in a day. I pushed it over a thousand times the first few hours (they told me, later). I'd have screamed every time I moved, except the tubes in my nose and throat made that impossible.

The pain and thirst (the first two weeks I could not drink a drop of water) were bad. Worse was the waking hallucination when they tried a stronger pain killer, morphine I think. There was heavy rock music, and this animated vision of Hell in a striking flame and blood palette. Nothing I have ever seen in the darkest corners of the Internet will ever compare. When you are trapped and confronted by horror, you tell yourself, "it will pass." And so I counted the seconds, one by one. And it passed, as it always does.

I like to think a little bit of Hell came back with me. I got stronger, came back home, looked after myself as body and digestive system rebooted. Then I went straight back to work, popping in to the chemotherapy clinic in Brussels once a week for my dose of poison. One gets used to needles. I found a client in Dallas and started a year and a half of non-stop travel.

Some clients are nice to work with. This one was not. I protected my team, carefully built up our product, and bullied management into behaving. It ended with us shipping out to South Korea, opening an office right outside the client's campus, and wildcatting our way through the vicious politics. We did a good job, and in the end they paid all our invoices.

At which point I decided to stay at home and look after my young kids. They were glad to have their dad back. And I became mom too, a single parent. And every day, in the back of my mind, "this could be my last month, or year."

Is my cancer gone? I cannot know. I can only know if it comes back, in my blood, in my bones. I do the scans, every six months, every year. "Nothing," they tell me. "Nothing, yet," they think. I still carry the port where they'd stab me once a week. "It's not really worth removing," says my oncologist. "maybe next year." That pain in my shoulder, not going away. Is the cancer back? No, it's damage from too much drumming.

What would you do with your life, if every month or year could be your last?

For me, it was raising my kids, writing, going to conferences, and finding clients who would let me work from home. None of these are easy. Yet they are just a matter of focus, and determination.

Writing books is like writing articles, just more. Life hits us with questions. We try to answer them. My way of thinking about complex questions is to write. I think I'm good at this, and reading my work from years ago, I find myself thinking, "nice, this person got it."

Perhaps it's the self-flattery of the wanna-be expert. I hope not. Some of us think as part of the crowd. We adopt the thoughts of others, and we rarely step outside predefined boundaries. We are bricks in walls and we feel good there.

I've been outside the walls, a foreigner, all my life. We live in Molenbeek, the terrorist capital of Europe, because in a city of immigrants, this commune of the undocumented feels most like home to me. All my professional life I've worked to overthrow existing systems. Is writing code an act of revolution? For me, yes. Deliberately so. I want to smash the Wall, and its self-righteous mistreatment of the less powerful. I dream of collisions.

A project like ZeroMQ goes beyond "disruptive." It is about taking the old rule book, burning it, and peeing on the smoking remains. Not just rules about commercial software. We also rewrote the rules on how to make open source. Activist communities can be as abusive and arrogant as any company. Worse, in many cases.

Writing, also, is a revolutionary act. I'm mostly a polite writer, because I think manners are important. We don't need to insult or diminish others to disagree with them. And politeness lets us learn from those we disagree with. Yet when I write I am remorseless. Why pull a punch? Better to be wrong than to be silent.

I'm a traitor to my "race" and gender and culture. These are boxes to contain and divide us. The lure of privilege was always there, growing up in a diplomatic family. We had servants and mango trees. Yet my first language was Swahili. I was always outside the walls, making friends with those who had the least and who shone with decency.

The debt of privilege is massive, yet it is like any debt. You repay little by little, as you can. You never forget it, and you never justify it. For me, paying off that debt meant returning to Africa many times, to work there, to make life-long friends in Togo, Lagos, Ouagadougou. I consider myself the lucky refugee, blessed with opportunity, and able to invest that back in others.

It meant working in the public good. My first free software project dates from 1991. I spent years working unpaid to fight against software patents, and for open standards. Collisions: we challenged billion dollar institutions and forced them back. This was no guilt trip: the slow, deliberate repayment of the debt of privilege was always a pleasure. And one learns, one learns.

I refuse to take sides. Predators come in all genders and colors, shapes and sizes. The bulk of decent people also come in all genders and colors. For every twenty-five Alices and Bobs, one Mallory. The abusers love to divide to conquer. An ethical system gives all participants equal opportunities and rights. And it brings people together instead of creating divisions.

So call me an atheist humanist if you want a label. I hold that every person contributes something, even the "worst" among us. Even through war and destruction, we learn how to move forwards as a species. We live, or we die, as one species. There are no race, gender, or culture wars. These are illusions that deceive and divide.

Our forever war, as a species, is against ignorance and magical thinking. Only accurate knowledge can secure our future. There is no price tag for this. If it takes blood and pain to learn, then we pay in blood and pain. The little piece of Hell on my shoulder tells me (metaphorically, I'm not delusional): "no-one cares, you mean nothing, you're just a meat machine. So work, now!"

Which is why I write. Capture problems, try solutions, write it down in plain language, and invite criticism. Trial and error, and no matter how much people are offended, keep going.

The books: three so far. Each takes years of research, and six to nine months of writing during which unpaid bills pile up. Through every book I've learned a lot and aim to capture these lessons for others. The Psychopath Code was the hardest book to write, technically. I'm not a psychologist by training. Yet the book is solid and accurate. It is a book I needed, and found nowhere, so had to make.

When you express yourself, you invite attack. It is an essential part of the process, to stand up and be ridiculed. Here's a dismissal of my book (from Twitter, now deleted): "I know more about psychology than this guy, and my dissertation was in psychopaths! I should critique his book… but… no."

Young person, if you know so much about psychopaths, why aren't you out doing the same research I did? Are you talking to victims and psychopaths about their experiences? Where's your research on predator-prey models and the relevance for humans? How about the profit-loss accounting of abuse? Why aren't you describing how the abusive bond works? And critically, how to break it and get out with our minds intact. We need to know this stuff.

Enough people studying this material, for decades. So many experts. And really, so many excellent studies and papers. So why did I need to write that book? Institutions, that's why. The more you know, the less you see. Live outside the walls, and you get a different and broader perspective.

I have a profound lack of respect for institutions, their walls and bricks; their protection of ignorance, their fear of originality and real diversity of thought. Their narrowing of focus, and their dishonest reverence for authority.

There are good institutions, such as the medical system that saved my life. Yet even sick and dying I was able to diagnose myself faster and more accurately with my mobile phone than the doctors could. "It's not a gall stone, so can we do a biopsy already, please?" "Yes, I'm getting allergic to the pain killer, that is why I'm vomiting and ripping out my stitches. Please stop giving it to me."

It wasn't simply careful decision-making. It was slowness, and it almost killed me. When you have a fast-growing cancer, an extra week to make a biopsy can be fatal.

The more we invest in structure and organization, the stupider we become. The smartest teams are small and dynamic and focused on solving problems through trial-and-error, not debate. Let alone the common pattern of "you are an idiot, and you are wrong, and I will tell you why." Or, god help us, politics and the thirst for power.

I want to say "thank you" to the hundreds, thousands of people I've met and spoken with over the last years. You've been wonderful, and given me so much. Most of my pre-cancer friends drifted away, after I didn't die. I recall one seeing me at a conference, going pale. "You're not dead!" Indeed, no, I may be bald, but I'm not dead. Yet.

Five years seems worth celebrating. I did a lot these last five years: paid off many of my debts; became a full-time parent to my kids, who became happy bundles of love and laughter; rebuilt a business; wrote some heavy, solid books and over a hundred articles; taught myself piano and started composing; and saw most of my projects thrive and survive.

Don't wait for life to come knocking. Go out there, with love and optimism, and make good things happen.

The constant silent threat of recurrence defines my view of my work, and my life. Every one of my articles, books, projects, tweets, and patches is the last. Every time I leave someone I care about, I tell them how much they mean to me, hug them if possible.

No exceptions, no false drama. Every meal I eat is the last one I'll ever taste. Every song I play is the last one, before cancer drags me back to an iron bed and those damned beeping pumps. My music isn't sad, it's just always saying "adieu". These are the rituals of the survivor, yet they are a powerful tool. Try it, one time, to make every song your last.

And the weirdest part was the joy at being alive. From that moment five years ago, except when I was shuddering from the pain, I was euphoric. The sheer ridiculousness of not dying, yet, wore off after a year or two. The pleasure at being alive and surrounded by lovely people (twenty-five to one, I remind myself) sometimes spills over.

Sometimes I think my cancer saved my kids and me from a terrible alternate time line. Then again, I hope one doesn't need to go through cancer to become a happier person. If you can be truly thankful for the last five seconds of your life, you don't have to be thankful for the rest.

Here now is the payload of this self-indulgent article. Five simple wishes to make the Internet a happier, better place. (Now you can call me delusional.)

More Manners

We seriously lack manners, on-line. It's as if being rude to total strangers suddenly became acceptable somewhere around 1998. It isn't cool. If you're one of those people who like to use clever adjectives to denigrate people you disagree with, realize this: it makes you look bad.

Less Arrogance

"I've studied X so your opinion on it is obviously wrong," is a logical fallacy. Claiming expertise because you lack originality is easy, and weak. Go out there and make mistakes! Learn by going beyond what you get second-hand. Solve real problems with new crazy theories, and don't be afraid to share them.

Calm It Down

"I don't agree with what you say, so you're toxic," is a common yet useless pattern. It infects open source ("you made a bad patch so you're toxic") and open discussion. Most people are honest, self-correcting, sincere. Some bad actors, toxic, and damaging. Learn to tell the difference by measuring your pain.

Take Time to Think

Instead of reacting, act. Take time to read what people say, and try to understand why they say it. Everyone's perspective is a fact. Don't argue with facts. Argue against interpretations, or better, try to help others to fix their arguments.

Trust Yourself

You don't need to be perfect. Every day, take a risk, learn something new, and speak to someone who you'd otherwise ignore. If people are hostile to you, shrug and carry on. There are a lot of people on this planet. No matter who you are, or what you do, you are precious, and there are people who will appreciate that.