pieterh wrote on 22 Apr 2016 03:43
Time for my last article (as it turns out, not really). I could probably write more, yet there are times for everything and after this, my attention will be focused on the most comfortable position for my bed, the schedule for pain killers, and the people around me.
Yesterday I had twelve visitors, including my lovely young children. You'd think it's exhausting, yet the non-stop flow of friends and family was like being in a luxurious hot bath with an infinite supply of fresh water.
I was a disconnected and lonely young man. Somewhat autistic, perhaps. I thought only of work, swimming, my pet cats, work. The notion that people could enjoy my company was alien to me. At least my work, I felt, had value. We wrote code generators in Cobol. I wrote a code editor that staff loved because it worked elegantly and ran on everything. I taught myself C and 8086 assembler and wrote shareware tools. The 1990's slowly happened.
Over time I learned that if you chat with a stranger, in the course of any kind of interaction (like buying a hot dog, or groceries) they'll chat back with a beam of pleasure. Slowly, like a creeping addiction to coffee, this became my drug of choice.
In time it became the basis, and then the goal of my work: to go to strange places and meet new people. I love the conferences because you don't need an excuse. Everyone there wants, and expects, to talk. I rarely talk about technical issues. Read the code, if you want that.
And so I'm proud of my real work, which has been for decades, to talk with people, listen and exchange knowledge, and then synthesize this and share it on with others. Thousands of conversations across Europe, America, Africa, Asia. I'll take whatever credit people want to give me for being creative, brilliant, etc. Yet the models and theories I've shaped and documented are consistently drawn from real-life experience with other people.
Thank you, my friends, for that. When I say "I love you" it's not some gesture. You literally kept me fed, professionally and intellectually.
So I wanted to document one last model, which is how to die, given some upfront knowledge and time. I'm not going to write an RFC this time. :)
How it Happened
Technically, I have metastasis of bile duct cancer, in both lungs. Since February I've had this dry cough, and been increasingly tired and unfocused on work. In March my Father died and we rushed around arranging that. My cough took a back seat. On April 8 I went to my oncologist to say that I was really not well. She organized a rush CAT scan and blood tests.
On 13 April, a horrific bronchoscopy and biopsies. On 15 April, a PET scan. On 16 April I was meant to drive to Eindhoven to keynote at NextBuild. Instead I went to the emergency room with explosive pains in my side, where they'd done the biopsies. I was checked in and put on antibiotics, which fixed the pain, and on 18 April my oncologist confirmed it was cancer. I'm still here, and my doctors are thinking what chemo to try on me. It is an exotic cancer in Europe with little solid data.
What we do know is that cholangiocarcinoma does not respond well to chemotherapy. Further, that my cancer is aggressive and fast moving. Third, I've already some clusters in other parts of my body. All this is clear and solid data.
So that day I told the world about it, and prepared to die.
Talking to a Dying Person
It can be horribly awkward to talk to a dying person (let's say "Bob"). Here are the main things the other person (let's say "Alice") should not say to Bob:
- "Hang in there! You must have hope, you must fight!" It's safe to assume that Bob is fighting as hard as possible. And if not, that's entirely Bob's choice.
- "This is so tragic, I'm so sad, please don't die!" Which my daughter said to me one time. I explained softly that you cannot argue with facts. Death is not an opinion. Being angry or sad at facts is a waste of time.
- "You can beat this! You never know!" Which is Alice expressing her hope. False hope is not a medicine. A good chemotherapy drug, or a relaxing painkiller, that's medicine.
- "There's this alternative cure people are talking about," Which gets the ban hammer from me, and happily I only got a few of those. Even if there was a miracle cure, the cost and stress (to others) of seeking it is such a selfish and disproportionate act. With, as we know, lottery-style chances of success. We live, we die.
- "Read this chapter in the Bible, it'll help you." Which is both rude and offensive, as well as being clumsy and arrogant. If Bob wants religious advice he'll speak to his priest. And if not, just do not go there. It's another ban hammer offense.
- Engage in slow questioning. This is passive-predatory, asking Bob to respond over and over to small, silly things like "did I wake you?" Bob is unlikely to be a mood for idle chitchat. He either wants people close to him, physically, or interesting stuff (see below).
Above all, do not call and then cry on the phone. If you feel weepy, cut the phone, wait ten minutes, then call back. Tears are fine, yet for Bob, the threat of self-pity looms darker than anything. I've learned to master my emotions yet most Bobs will be vulnerable.
Here are the things that Alice can talk about that will make Bob happy:
- Stories of old adventures they had together. Remember that time? Oh boy, yes I do… it was awesome!
- Clinical details. Bob, stuck in his bed, is probably obsessed by the rituals of care, the staff, the medicines, and above all, his disease. I'll come to Bob's duty to share, in a second.
- Helping Bob with technical details. Sorting out a life is complex and needs many hands and minds.
- "I bought your book," assuming Bob is an author like me. It may be flattery, or sincere, either way it'll make Bob smile.
Above all, express no emotions except happiness, and don't give Bob new things to deal with.
Bob's Duties
It's not all Alice's work. Bob too has obligations under this protocol. They are, at least:
- Be happy. This may sound trite yet it's essential. If you are going to be gloomy and depressed, Alice will be miserable every time she talks to you.
- Obviously, put your affairs in order. I've been expecting death for years now, so had been making myself disposable wherever I could. For family, that is not possible. For work, yes, and over the years I've removed myself as a critical actor from the ZeroMQ community.
- Remove all stress and cost that you can. For example Belgium permits euthanasia. I've already asked my doctors to prepare for that. (Not yet!, when it's time…) I've asked people to come say goodbye before I die, not after. No funeral. I'll give my remains to the university here, if they want them.
- Be realistic. Hope is not medicine, as I explained. If you are going to negotiate with your doctors, let it be pragmatic and in everyone's interests. I've told mine they can try whatever experimental chemotherapy they wish to. It's data for them, and the least I can do for a system that's given me five+ years of extra life.
- Assume the brutal worst. When my oncologist saw my scan she immediately called me and told me, in her opinion, it was cancer. In both lungs, all over the place. I put the phone down, and told the children. The next day I told their schools to expect the worst, then my lawyer, then my notary. Ten days later the biopsies confirmed it. That gave us ten more days of grieving and time to prepare.
- Be honest and transparent with others. It takes time to grieve and it is far easier to process Bob's death when you can talk about it with Bob. There is no shame in dying, it is not a failure.
Explaining to the Children
My kids are twelve, nine, five. Tragic, etc. etc. Growing up without a father. It is a fact. They will grow up with me in their DNA, on Youtube as endless conference talks, and in writing.
I've explained it to them slowly, and many times over the years, like this. One day, I will be gone. It may be long away, it may be soon. We all die, yes, even you little Gregor. It is part of life.
Imagine you have a box of Lego, and you build a house, and you keep it. And you keep making new houses, and never breaking the old ones. What happens? "The box gets empty, Daddy." Good, yes. And can you make new houses then? "No, not really." So we're like a Lego houses, and when we die our pieces get broken up and put back in the box. We die, and new babies can be born. It is the wheel of life.
But mostly I think seeing their parent happy and relaxed (not due to pain killers), and saying goodbye over weeks feels right. I am so grateful not to have died suddenly. I'm so grateful I won't lose my mind.
And I've taught my children, to swim and bike and skate and shoot. To cook, to travel and to camp. To use technology without fear. At three, Gregor was on Minecraft, keyboard in left hand, mouse in right. At seven, Noemie learned to shoot a pistol. They speak several languages. They are confident and quick learners, like their dad.
And everyone needs to learn what it means to die. It is a core part of being a full human, the embrace of one's mortality. We fight to live, of course. And when it's over, we embrace the end. I'm happy that I can teach this lesson to my children, it is one that I never had.
Euthanasia
I am, finally, so glad I never quit Belgium. This country allows for death on demand, for patients who are terminal or have a bad enough quality of life. It takes three doctors and a psychiatrist, in the second case, and four weeks' waiting period. In the first case, it takes one doctor's opinion.
My dad chose this, and died on Easter Tuesday. Several of us his family were with him. It is a simple and peaceful process. One injection sent him to sleep, into a coma. The second stopped his heart. It was a good way to die, and though I didn't know I was sick then, one I already wanted.
I'm shocked that in 2016 few countries allow this, and enforce the barbaric torture of decay and failure. It's especially relevant for cancer, which is a primary cause of death. Find a moment in your own jurisdiction, if it bans euthanasia, to lobby for the right to die in dignity.
My Feelings on All This
I've never been a fearful person. My last brush with death left me so casual about the whole concept of professional and social risk that I became the predatory character Allen Ding so nicely describes. That calmed down after our Game of Thrones project ended. It was never really me, just the person I became to make things work, in that place and time.
Having had years to prepare for this, and having seen a great many delicate plans come together over those years, leaves me deeply satisfied. Since 2011 I've become an expert pistol shot, taught myself to play piano (and composed many small pieces), seen my children grow into happy, bubbling characters, written three books, coached the ZeroMQ community into serene self-reliability. What more can a Bob ask for?
The staff here are lovely. I've no complaints, only gratitude to all my friends for the years of pleasure you've given me, my drug, which kept me alive and driven.
Thank you! :)
Think of the Children
Please use this article to add your stories. If you have them elsewhere, or you emailed me, copy/paste as a comment. Feel free to write in Dutch or French if that's your language. I'd really like a single place where my kids can come and read what other people say about their dad.
Many people have asked my PayPal address moc.xitami|hp#moc.xitami|hp, to send a donation for my children.
Living Obituaries
Thank you to the following people for their articles:Ewen McNeill, Allen Ding, Meredith L. Patterson, Dylan Beattie, Jef Claes, Josh Long, Brian Knox, Yves, Alan Yorinks, Stijn Volders.
Translations and Reproductions
This article or parts of it have been reproduced in Chinese, Facebook, Russian, Geek times, Italian, Il Post, The Guardian, Dutch, RTL Nieuws, N.TV in Germany, and French, Romanian, and was much discussed on Hacker News.
Comments
Dear Pieter
Now you are no longer here, I need some advice on what to do and how to think about things, now you are no longer here! From you I am learning to be brief, and in that spirit, have three puzzles for you!
1. How can I - like you - turn weaknesses into strengths? You were gregarious to overcome shyness; played music to express your hidden feelings. You had a really smart way to live! How can I learn to do this too?
2. How can I be there for your kids? You warned me this might not be easy. Yet they are like sunshine to us on a rainy day. Please give me a clue Pieter: how can I be a good auntie?
3. How can we find peace? You and Frans, our father, both died this year. Those of us who remain need to live in harmony. But is this possible? How can we find peace?
Thanks bro! With love for 2017 when it comes.
Yours - Nellie
R.I.P. Pieter Hintjens!
Thank you so much for the great projects, books and your protocol for dying that you left behind. It's a very solid and thoughtful read. Recently, I've experienced loss of a friend and also my grandfather which despite the negative psychological impact as a whole affected me in a better way. I must go through it again cause I think it will help me put it all together.
Your kids must be grateful and proud to have such a father.
Thank you!
To Pieter's children: you had an extraordinary Father. Because of that, you still have, and will continue to have, his strong positive influence in your lives. His words will be available when you need them, and his wisdom and humor will help you through the trials you will face as you grow up, become adults, and as you face your own, inevitable, deaths.
Pieter's words apply to Life - to living it well, openly, honestly, and without denying a basic fact: we will all die. We may not know how or when, but every one of us will die.
We can accept that fact and live our lives well, being kind and generous to those around us, contributing in our chosen professions, and helping the world be a better place in ways both small and large. The gifts we receive, as Pieter learned, are immeasurable, full of love, joy, friends and family.
Or we can be mean, petty, selfish, jealous, greedy, grabbing only for ourselves. We might wind up with more monetary wealth and material goods than we ever thought possible. It doesn't matter in the end: we still die, and we cannot take money or goods with us when we do.
How much better to be surrounded by loved ones, both family and friends, during our last months, weeks, days, hours. What a gift to be able to decide exactly when that last moment will be, so we can ensure that we have the love, support, and comfort to face the end calmly and yes, joyously, but also to give those we care about the chance to help us through those last minutes. We don't have to die alone, and our loved ones don't have to regret that they were not there, that they "let" us go alone, perhaps afraid and sad, without someone there saying "We love you, and it is okay for you to leave us now."
Please check on the laws where you live and add your voice to those that support "Right to Die" and "Death with Dignity" legislation. Volunteer for Hospice, visit people in long-term care facilities and hospitals who do not have family and friends to do so. Your lives will be richer for it, and who knows, you may reap the benefits when it is your time to pass from this beautiful blue and green world.
I loved social architecture, and now I'm reading the psychpath code.
Have you read Marcel Proust? Your writing reads on itself so smoothly, to me it seems like I'm reading Proust.
Dear Pieter,
I wanted to drop a note sincerely thank you for the book The Psychopath code. Having had the misfortune of working with people who are pure evil, your book was really helpful. I hope to read it again (just bought the Kindle edition). Thank you again for your writing. Your children are truly lucky to have a father like you and I am sure they will be happy to read all the comments from strangers whose lives you have touched.
Thank you again.
Hi Pieter
I just saw your 'Trick-better-software'.
Mainly to hear your voice. I don't understand 90% of what you're saying. But I connect when you talk about Minecraft. My boys (5 and 6y.) play it at a basic level. And I love that it is that basic for learning programming. I hope it gives my boys a basis for working with computers and programming later on.
I got even more thrilled when you explain why working together is important and especially with young kids. You adress a topic I don't hear a lot. Please, learn from kids. Copy their open view on the world and respect and prize their contribution.
Thank you.
Beste Pieter
Ik was 17 en een ramp op de weg en bovendien zag ik het nut van te leren rijden helemaal niet in. Iedereen die mij wou leren rijden, werd na een tijdje zenuwachtig omdat ik er echt niets van bakte. Zelfs de lessen in de rijschool hadden tot niet veel resultaat geleid.
Toen bood jij aan om mij te leren rijden. Je rustige persoonlijkheid, je vragen (wie rijdt er nu achter jou? Welke kleur heeft de auto achter jou?), je motiverende woorden, enz. zorgden ervoor dat ik in amper 2 uur zelfzekerheid en zin om te rijden kreeg!
Ik krijg vaak complimenten over mijn rijstijl en over mijn parkeertechniek en elke keer vertel ik aan de complimentengever dat het dankzij jou is dat ik dat alles kan, dat het dankzij jou is dat ik kan rijden :)
Heel erg bedankt daarvoor! Jij was het misschien al vergeten, maar ik denk nog bijna dagelijks "en wie rijdt er nu achter mij en welke kleur heeft de auto?" :)
Heel veel liefs!
Sofie
Hi Pieter,
I like your protocol, such a great piece of humanism.
We met in FFII some years ago. It was quite a ride. :)
Just want to wish you and your family all the best.
Stephan
Ok Pieter, being a dad since a few months it took me some time to actually start writing this down as I relate strongly with you and your loved ones.
Since I've had the chance to meet you and your kids at EuroPython 2014 in Berlin, I'll address to them in their mother's tongue.
—
Cela fait bientôt deux ans que j'ai rencontré votre père, dans l'une de ces nombreuses conférences auxquelles il participe et où il vous avait amené.
Je garde de lui l'image d'une personne inspirée et source d'inspiration qui a parlé à des centaines de personnes pendant une heure sans une forme apparante de préparation. C'était la première fois que je voyais cela et ses idées et points de vue m'ont beaucoup intéressé.
J'utilisais à l'époque une des technologies dont votre père est à l'origine et je rencontrais quelques difficultés avec son utilisation dans des cas assez particuliers. J'ai alors participé à la formation qu'il donnait durant la conférence afin d'avoir l'occasion de lui parler pour qu'il m'aide et me convainc de continuer à utiliser cette technologie que j'aime tant.
Cela ne va sûrement pas vous surprendre, mais rien ne s'est passé comme je l'avais prévu :)
J'ai en réalité participé à une formation moins technique que philosophique et méthodologique sur le "comment travailler efficacement ensemble dans le monde de l'Open Source". J'y ai vu de jeunes enfants (vous!) y déambuler et se faire embrasser par leur père qui (à ma grande surprise) leur parlait Français.
M'a-t-il convaincu de continuer à utiliser la technologie en question ? Non, il m'a lui-même convaincu du contraire !
Ce que je retiens de votre père ? Un grand Hollandais, sourire aux lèvres, super accessible et doux avec ses enfants m'ayant donné une forte impression de liberté et de bonheur. Je n'oublierai pas la lueur dans ses yeux quand ils se posaient sur vous : vivez libres et heureux !
Belge, on es des belges pas des Hollandais… :) C'est vrai qu'on parl Neerlandais aussi a la maison.
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Ahah oui, j'ai pensé Belge et écris Hollandais à cause de cette langue bizarre ! désolé :)
Hi, Pieter. We've not met, but I'm a big fan of your work. I'd like to share an anecdote about how ZeroMQ helped me get past a rough patch in my career.
In the summer of 2013, a friend of mine—who I'd done some freelance work for in the past—asked me if I had time to help him get a new business venture going. He was pursuing a contract with another company to deliver realtime location data for professional athletes during games. The idea was to sew RFID tags into the jerseys of every player, and use an array of sensors arranged around the periphery of each stadium to receive the data. My friend had just received sample hardware from his customer, and needed somebody to write a proof-of-concept C++ application that would collect data from the hardware and disseminate it to various downstream processing nodes.
I was pretty busy with my 'real' job at the time, but it was an interesting enough project that I told him I'd find time for it. Somehow. The comm to the hardware was via a standard TCP socket, so we thought it should be pretty easy to just read data from this socket, convert it to a more efficient/user-friendly encoding (think: msgpack, Protobuf, Thrift, etc) and ship it downstream using a ZMQ_PUB socket. And it was. In the end, I delivered a few hundred lines of code structured as two nested loops inside a single main() function. I wrote this code in a single weekend, and billed my friend for a total of 20 hours. It maybe wasn't the best code I've written, but my friend only needed some 'seed' code to use in early demos, and said he would hire somebody to punch it into shape later.
Fast-forwarding 18 months: my employer laid off my entire development team! I'd never been laid off before, but before I could work myself into a panic about what to do next, my friend got word about my situation and contacted me. The sports project had been a huge success. My friend offered me a job immediately!
So, I'm grateful that the tiny bit of ZMQ work I did in 2013 helped me weather what could have been a difficult situation almost two years later. But the biggest surprise was seeing the nature of the changes my new team had been forced to make to my code in the interim. I expected the code to look quite different, but, to my shock/delight, the only changes were the addition of a few command line arguments for diagnostics/debugging, and some code to read settings from a config file. For the most part, the code I wrote in a single weekend was the same code my new employer had used to ship some 10 billion location data packets during 130 sporting events in 2014!
Had I not used ZeroMQ for this, I don't believe such a feat would have been possible. The semantics of ZMQ_PUB were just such a perfect fit that I only needed a tiny bit of glue code to tie everything together. I've since teased apart the single main() function so I could get tests around the message-parsing/conversion bits, but ZMQ is still doing most of the heavy lifting for us. And it Just Works™. So… thanks to you and the community you've built for that.
Thanks, too, for writing 'The Psycopath Code'. I happened across it on Amazon about 6 weeks ago and was intrigued when I recognized your name. I couldn't put my Kindle down until I'd completed it—really fascinating stuff. My brain is still processing it. One of the main things I took from it is just how taxing it is for me, personally, to get angry. Guilt, Shame and Remorse always come hard on the heels of Anger, so I really don't like to go there. I've noticed before that not everybody seems to pay this same cost, and dealing with those people is exhausting. Your book, more than anything, has helped me become aware of my own 'emotional chains', so I don't have to expend as much of my own energy to process encounters with people that are able to wield anger as a weapon with (seemingly) zero personal cost. I've always just referred to those people as 'assholes', but you've made me realize that the damage they do is: 1) very real, and 2) much more pernicious than I'd imagined. I don't have any psycopaths trying to feed on me at the moment, but I'll be ready for the next one that tries to chew on me.
The 'ZMQ Guide' and 'The Pyscopath Code' were such great reads that I picked up 'Culture & Empire' yesterday. I haven't read much of it yet, but it, too, seems fascinating. I'm going to get back to reading it now, in fact. Just wanted to leave you this note saying how helpful your work has been to me…
Wow, thank you for the story. It's rare that people tell us what they do with ZeroMQ. You did a good job… it's not the code you write that matters as much as all the complexity you don't introduce that does.
And I'm so glad you like the books.
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