Ever since my diagnosis, I have been gradually saying farewell to life. Two years after the diagnosis my first book was published. In various interviews, I was asked about the message of my book. Hmm, shit, never thought about this. I chose a term I have often used: LIVE, GODDAMNIT! Anita Witzier asked me what the message of the second (also the last) book was going to be. Obviously: DIE, GODDAMNIT! The one cannot do without the other. I had borrowed a Zen master statement before: “The art is wanting to live and being willing to die at the same time.”

I am saying farewell to life bit by bit. A few times I already unintentionally gave some loved ones and readers the feeling it was over. Some of them said farewell and were confused when I stubbornly lived on. It surprised and confused me too. Sorry about that. Coquetting with death is distasteful.

I know how to live by now. I am still doing it to the full. And dying?

Dying is a process, passing on is a moment. Passing on is very simple, anyone can do it. Dying is a different story really. Dying is finishing, giving back before it will be ripped out of your hands, achieving peace. Yes, peace, when you do not fight anymore, but acquiesce: it is fine as it is. Religious freaks would say, if not my but Thy will be done. Dying is also a starting point: you can only really live if you are able to die properly.

My end is approaching. It could easily be another ten years in coming, yet it is finally sinking in that the end is in sight. That is because my eyes are deteriorating, which limits my ability to communicate. Compared to last year, I barely manage to squeeze out one third of the number of letters from my eyes in one day.

I imagine I still have three boxes of a cubic metre each filled with letters at my disposal. Most of you still have a whole warehouse full left. So many, that you cannot even imagine they will ever run out. I have no idea how many letters fit in a box of a cubic metre. Many, no doubt, but not infinitely many. I do know that I will certainly need half of them in order to survive: instructing caregivers, making appointments with the doctor, et cetera. The rest of them will largely be spent on living: enjoying conversations, maintaining my social life, being useful and relevant, et cetera. If I am not careful, I will have no letters left to die: a good last will and testament, letters to Zoë, my second book, etc. I am in the fortunate position where I am allowed to die before I pass on. Suppose you are hit by a city bus with a driver who is texting, you’re not so lucky then.

It still sucks, of course, to be preoccupied with your death, no matter how happy your approach to it. Take my gravestone, for instance. Tombstones are not allowed where I will lie. A pity, because Paul had a wonderful idea for this. I discussed it with Otto, my father who, with a mischievous twinkle in his eye, came up with a trick that made it feasible. Peter, the wittiest and best goldsmith in the world, made it a reality, et voilà: a work of art! Happyhappyhappy!
Curious? Good. You will hear the real story at the funeral. Oh, shit. When I am dead. Ugh.

Now a paragraph to catch your breath and relax for a minute. There used to be a Dutch TV programme called ‘Keek op de Week’. Kees van Kooten and Wim de Bie ridiculed all of society by playing characters. They had this scene once with Kees playing himself. He arrived on a motorcycle, his motorcycle. He got off and rather timidly he explained he did not actually need that motorcycle for anything. “My wife knows, so I said it is needed for the programme. Well, hence this scene, so. I hope I will come up with something new next week.” End of scene.

I bought three different LPs of Kind of Blue. Not even different versions. All three use the same recordings from ’59. Different masterings. Iris, I need them for my blog, honestly, have a look, I am writing about them.

Oh, I wish marriage was that simple.

Zoë was sitting on my lap the other day. My breathing tube came off. I was startled, as she used to think this was scary, the noise and the disconnected tube flying in all directions. My shock proved unfounded. Sweet Zoë took the tube, fixed it onto my cannula again and said: “Here you are.”

When I was three, I nicked the car keys and started our Simca. Zoë makes better use of her talents, fortunately.

Another time, she was sitting on my lap, waiting for the bottle. She synchronised her breathing with mine. No small feat, as I breathe very fast, it is almost panting. She rubbed her cuddly toy against her nose, a typical Iris trait.

Zoë is the only two-year-old in the world who patiently waits when her daddy types a question or an answer at an exasperatingly slow pace – tick … tick …tick (not always).

I just needed these fragments, as just now I felt for the first time what it is really like to be confined. The spells during which my eyes do not work properly are growing ever longer. These are periods in which writing or conducting a conversation is impossible, such is the amount of concentration and frustration required for chiselling letters. Last year, I would type every day for twelve hours non-stop at a flying pace… Well, maybe it is just fatigue; all I do is gaze at that monitor every day. My eyes are trying to tell me I want to go out more, that they would only like to see nature for a week. I hear them, but I do not listen. Why do we knowingly do things that are bad for us?

Life and death come together in gratitude. As an emotion, gratitude gives energy, happiness, it alleviates. Gratitude as an act creates a pause, making the grateful person humble for a moment. Thanking is not selfish, perhaps the ego even briefly dies for a moment in order to create space. For what? Well, indeed for something else. No wonder why Zennies bow, Christians pray on their knees, and Muslims make themselves small on a prayer rug. Ahem. Or why you just say “Thank you” when checking out.

Life and death come together in gratitude. This is actually the reason why I started this post: gratitude. I am floating on a sea of love, carried by 10,000 hands. Really, 10,000? Well, more or less. At the end of the first book, I wrote a small word of thanks to all the professionals who participated in the strategic battle against ALS. Back then, I was able to squeeze everyone into one or two pages.

I started making a list of the people I would like to thank for their support, to conclude the second book with. Seriously, the names alone filled a whole page. If I were to elaborate … I can get away with a single line for most names. For instance: Dolf gave up his sesshin in Vught in order to do his sesshin at my place, three or four? times. Have to look up how often. For months on end, Nienke would visit every Monday morning to give me private yoga lessons, until I really wasn’t able to do this anymore. Some names I can hardly squeeze into one sentence: Daan, a nurse, selflessly facilitated a weekend trip as well as a holiday to England by travelling with me and performing the tasks of three nurses on her own, even though she practically did not know me.

It gets more difficult when you start focusing on people like Martijn or Paul or Menko. I could already pen a blog just about how our four partners made a weekend away terrifically great for me, by wiping off my tears, letting me pour my heart out, making me feel warmly welcome time and time again, or by being the only one to see how I really feel.

Doing justice to the mountains moved for us by, I will randomly mention three individuals, Trudie (private hairdresser, Daddy Days facilitator, worthy troublemaker), Pieter (It is as if Sivert wrote Into the Sea with him in mind, one line in particular) or Reneke (she followed me from New Zealand to Tarifa beach, and that was only the beginning) is next to impossible. Jiska, my other sister, by chance gave me a moment I could capture in a story, enabling me to at least capture a fraction of the support she gave me. No, even if I had a hundred boxes filled with letters: describing my gratitude in full is impossible. Occasionally, however, I try anyway.

What I intend to say, the image I want to portray, is … One of tremendous wealth. A horn of plenty of love and beautiful moments. The sea of love. I have got so much to be grateful for, it is almost obscene. My purple meditation cushion, for instance, has brought me such a great deal. Across 83 generations, Gautama Buddha first taught me how to live, and now how to survive. If you can see it, there is such an abundance of beauty, everywhere, that you will have to live on, 100%.

Once again, I am wondering: is this real? My daily life is filled with rubbish, frustration, pain, powerlessness, anger, sadness, shit. Isn’t writing about a sea of love and beauty very hypocritical? No. This sea exists, continuously, always, like the moon. I only have to look at it to see it. Sometimes I forget. Reminders of this occur in Lisanne kissing me, Juel looking at me, Miga holding me, Rembrandt coming over with Flore, Zoë existing, and I can easily go on for ten pages. They fill me, so that I can cry it out again a little later (ugh).

Nobody’s life is easy (is yours? then you are missing something), and, at times, everybody feels lonely, sad, shitty, failed. You only need to be reminded of all the beauty in your life, in order to climb back up again. Look around you, during these Christmassy merry days, and die of love.

Translation: https://uitdekunst-vertalingen.nl/vertaler-nederlands-engels/. A very good and kind translator Dutch – English.

True story: I was at this rooftop wedding in New York. Impressive views of the nighttime city, all of the lights. We were nearing the end of the serious part, the “Yes, I do”‘s already exchanged. The very official looking judge said to the couple: “Now, repeat after me. We’ve come a long, long way together.” They duly obliged: “We’ve come a long, long way together.” Judge: “Through the hard times and the good.” While bride and groom repeat, a tiny corner of my brain begins to itch. Judge: “I have to celebrate you,” Couple: “I have to celebrate you,” These lines are beginning to sound familiar. Could it be some ancient marriage vow that I heard in a previous life? The judge continues, “… baby.” Couple: “baby.” WTF? Then their last line sounds: “I have to praise you like I should.”

“Do you want the truth or something beautiful?”, I ask my class of music ‘students’ one Friday evening. They do not know that this is a reference to Paloma Faith, so they opt for beautiful. Ok. Had they opted for truth, they would have watched a grainy, 24-year old clip of Tool, performing Sober in such an intense performance it would certainly have given them nightmares for a week. Beautiful is Jake Shimabukuro’s ukelele rendition of While my guitar gently weeps. The version they get to hear is the best of all Jake’s performances, but since it is not available online, you will have to make do with this one.

If you are experiencing ALS too, this page was written specifically for you.

When I heard I had ALS, I looked around on the web for stories of other patients. I didn’t look too long or too deep. Knowing what is ahead of you is not necessarily inspiring, but at the same time, I saw value in being prepared. I got quite a bit of motivation, perspective and understanding from talking to fellow patients and reading other blogs. I also know several people around me found comfort and wisdom in blogs of other patients.

We must have been the only tourists ever to go to Japan to stay in the hotel that Bill and Scarlett stayed in in that one movie. You see the weirdest things on TV. The hilarious part is that not one single non-Dutch person (them being the socalled target audience for this post) would know that I am referring to footage of our holiday that a million Dutch people saw on tv. Anyway. While you’re waiting for the next blog (which, incidentally, is going to be very long (the blog, not the wait)), I thought I would share a few updates about the book.

First of all, English readers, rejoice! The book did well enough to warrant the effort of a translation!

Second, despite all the work that went into creating the companion page for the book, where you will find a.o. the Spotify playlists, exactly two people visited the page thus far.

Third, did you know this blog got its title from a poem by Menko? Try translating poetry, or try finding an English title for the book. Impossible! Luckily we specialize in the impossible. Here is the translated poem:

Even if you know there’s less time ahead of you.
Even if this is all that remains, all you can confront, without fear.
Even if you have the courage to live on, to kiss and be kissed. Every single day.
Even if that’s what life has in store for you,
Then so be it.
Even with ALS.

Which also brings us to the English title: Even with ALS. Thank you, Marjan.

This one is a bit of a lecture, folks. I guess it is my way of dealing with disappointment.

 

 

Every now and then, I wonder, I wa-wa-wa-wa-wonder, have I still got it? Do I still have it?

With all my complaining lately, I thought it would be nice for a change to tell you about these wonderful presents I received lately. 

Hello, everyone,

Dear Zoe,

Let’s get one thing straight: Your name is not Zoe, it’s Zoe-with-two-dots-on-the-e. Only people like myself or cousin Hannes are allowed to skip the dots.

Girl, there is something that I am about to say that counts as an insult unless you are eight months pregnant or a baby, which you are at the time of writing this (which makes me wonder, would writing as a term still exist by the time you read this? once upon a time we would say in Dutch “een nummer draaien” (to dial a number) when we called someone on the phone, and I remember a kid wondering what that meant, as we have not used phones with one of those turning dials in ages, but I digress, so) ehr, which is to say, you are a baby, not eight months pregnant, so here goes: Girl, you are getting BIG. You were born with average weight, and when the nurse came to measure you two weeks later you had grown so much, and when we first plotted you on a growth curve it was clear that you don’t follow those, you pole-vault them. Right now you are part of the biggest 2.77% of babies in The Netherlands. Good. I hate average. And I love you.

So many people love you. We received so, so many cards, gifts and wishes for you…Each of them a token of love and a gentle pang of guilt as I never send cards or bring newborn-gifts myself. Also, about 27 cards that said “told you so!! being a parent rocks!!”, which probably translates to “you were a dick when we got kids”. I think you have 47 stuffed animals, 3 bathrobes with your name embroidered on them, about 58 full sets of clothing, and a mystery tree. Yes. We received a tree as a gift but we don’t know who it is from.

A few years ago I snuck back to the farm where I lived for part of my youth. We planted a walnut tree there, wrist-thick at the time, and the bend at the base that I made driving into it with the lawnmower was still visible in the huge, enormous monster of a plant (trees are plants, right? please pay better attention at biology than I did). Everyone has an experience or story like this and I hope you get a lot of them.

Your mom, you probably know this already, but she is one tough cookie. Each morning I get into the shower and turn on the water and then I get a heart attack as the water is ice cold because that is how she left it. She does this not out of sleepy disattention, like me, but she voluntarily finishes her shower with ice cold water. Paul showed me a movie the other day of some super model, Doutzen Kroes, screaming “Look at her! And she just gave birth a few weeks ago!!! So thin!”, and I am not shitting you, but I really didn’t see that much of a difference between her and and your mom. Well, ok, I noticed Doutzen’s breasts were smaller.

You didn’t live at your first address for very long, your grandfather(s) moved us with the help of thirty (!) friends into the place where we live now, a beatiful appartment in the vibrant heart of Utrecht’s coziest neighbourhood. Vibrant because trucks drive by, and cozy because I couldn’t think of another metaphor for noisy. With the windows closed it is peaceful, but with the windows open, honestly, I lived in the middle of New York, and that was way less traffic noise than this. Well, to be precise, I lived in New York for three weeks, and when it became time to pay my own rent I moved to New Jersey (ask Paul for a nice anecdote about that barkeeper in that lounge). I walked right across Times Square each morning on the way to my overpaid job. I miss that city, each TV-series that plays there, like 30 Rock, takes me right back to it. But I digress, because I always do, and I whine about our new place because I have Jewish ancestry, I really love it.

Just a day after moving in we went to see crazy in action; a lot of people swimming through the canals of Amsterdam, raising money and awareness for a disease that will probably be harmless by the time you get to read this. And again, so many friends and family and colleagues were there… It was a special day for us and I just mention it here because the day was so wild, it shook up your mood so bad the days after that we had to start with Gina Ford. Now, Gina Ford used to be a drill sergeant for the Navy Seals, but she got fired for being too strict, so she became a nanny and wrote a book about getting your child to sleep. So far, my contribution to the mental work that goes into raising you was limited to the suggestion “why not use duct tape?”, which is really a solution for everything from leaky diapers to getting the pacifier to stay in your mouth or keep your arms from flailing too much, so I don’t really get why your mom did not follow my wisdom on that, butanyways, Gina Ford, your methods may be strict and cruel (to me, at least, because you used to sleep so peacefully on my chest, and now you are only allowed to sleep in your bed), but they work, it is good for you, you are really a happy baby now, even sleeping through the night, so… if you ever get babies yourself, it’s not a bad idea to dig her book out of the archives.

Oh, also, angels exist. And by that I don’t mean angelic behavior, there is plenty of that as well, like your grandmothers help or Jos showing up with a beautiful collage of pictures for our bedroom wall, or, I could go on, no, what I mean is people who briefly show up, show you something divine, and then they are gone. I never much used to believe in them and I don’t think I have an idea of a God, but I started seeing them, very sparsely, here and there. A few years ago I fainted in the best sandwich shop in Utrecht. I woke up and felt like shit for too long so an ambulance was called in. And the very moment that the ambulance guy walked in, grey and all smile, I immediately knew: I will be all right. How someone can do a job like that and give so much care to a fainted yup, I mean… Sometimes in life you will believe people are bad, and that there isn’t enough good in the universe, and that is dangerous, because then you start to act like you are expecting bad, and then you will get bad things indeed. So that ambulance guy was an angel (just like that nurse from the ER was, who treated me to attention so undivided I was reminded what zen was about, or Laura recently was, she won the war for us) and with that he grew my faith in humanity. It sounds a bit grand, but trust your old man, they are there, all the more so for you, starting with the ones on your geboortekaartje.

Speaking of Old Man, it is a song by Neil Young, and until recently I thought it was about some guy who is young talking to some guy who is old. No, it is actually about a young man talking to his dad. The most painful lyric heard in the past year is when he sings: “Doesn’t mean that much to me to mean that much to you”. That is one of my biggest fears; you may not care about your biological dad if you don’t remember him… By age 10 you could be sick and tired of stories about me, or have a whole new family. Oh, we’ll see. I hope you not only get to read these but that you will even want to. Meanwhile, I will keep writing. To close this first letter, my prequel if you will, others will read it but I might package this away for  when your first kid is a week old. Then you can look across generations; the picture below is a picture of me, one week old, next to you, one week old. Hold it next to him or her, perhaps we will be there with you, but if not, I hope this is a nice memory.

Love you more than I know,
Garmt

A few more pics; below here the picture of the Jos-and-friends-creation in our bedroom, friendship, Zoe at four weeks, my new tattoo sneak peek pt 2.

Collage of pictures from our past that brightens up our bedroom

Random friendship/galaxyguardianship

Zoe drinking her milk

Roots, bloody roots

Hello all,

A series of moments from the past weeks, a collage, if you will. The moment that keeps sticking to my attention, that I'm trying so hard to relive, is that moment in the ambulance, where I didn't have ALS for the first time in a year. So let me start off with a few of the moments where I didn't feel it but where I still had it.

Tom, I'm glad you pulled through for me. I really thought your best days were behind you. I mean, we both know the greatness of Real Gone, although I have never really forgiven you for planning that tour, your first and only visit to The Netherlands in my entire lifetime, in the same month that my sister got married in New Zealand, but anyway. Make it rain has long been my favorite song, no matter what grumpy "only his early work counts" assholes may say. (God, I will really go over the word count with this one). But, c'mon, that discgasm "Orphans" and that live registration….We both know you've got better in you. And when 'Bad as me' came out and I thought it was quite noisy I should have known directly. It took me a while, your music takes attention to beappreciated. I haven't really LISTENED to it until recently and as so often with you: listen through the noise and beauty awaits. I hadn't expected it to be all in the timing. Not just in the title song but pretty much in every track of that album. Your timing is unlike anything I've ever heard before.

The same goes for the rhythm that this drummer is laying down. Menko brought me to jazzclub The Standard and I am five feet away from this guy who is creating something which is probably, mathematically speaking, entirely logical (therein also the difference with Tom, mathematics that describe his music hasn't been discovered yet (except maybe by one guy, but then he went crazy)). The guy typing this for me is getting such a headache…imagine how I used to feel when i still wrote this. So that drummer, he is really swinging. I mean, you know when they say "I feel it in my bones"? Like that. But the first few songs, he just has this dead-pan look on his face. Jaded or bored? He's won five Grammys but his gaze says "just put your attention on the piano player please". But me, I can't help but grin like a fool. And then his drifting eyes lock with mine and all of a sudden it's like he realizes: you know, actually I am swinging pretty good. He's still looking at me and erupts in pure joy. I blush…There's a pleasure now that we both share, something intimate and at the same time really basic and for everyone to see.

Ok. A few moments that are shorter to describe.

I'm trying to sleep, my head racing over what he said or she said and what I should have said and I'm really concerned about getting something or not getting something and then I feel Zomer move because I have my hand on Iris' belly and immediately every ounce of my attention and care is right there. I have an insight: so that's how this is supposed to work. Kids deliver us from constant obsession of self and ego. At least for a split second.

As my friends cart me into the restaurant in Vinkeveen and help me stand and sit, casually remarking "Nein, das ist kein alcohol" to the wide eyed German tourists who are about to make a joke, I notice not for the first time that my loved ones adapt to the situation faster than I do. Ronnie is not ashamed to lift me. Stephan is not embarassed to undress me. Martijn is not uneasy about cleaning me etc. Then why am I?

I go for a beer with Paul in Utrecht. Someone remarks: "Hey, nice walking stick!". Damn right. Mahogany wood, crafted by one of the most exclusive woordworkers in Holland, my cousin Maarten.

I stroll through Haarlem with my friend Anne Jan.

"AJ?"

"Yes?"

"How often did you meet a woman and were naked in your shower with her, within 5 minutes of knowing her name?"

"….. not yet, I think.."

"Me, three times, this week alone."

Of course, I am cheating a bit. I am the only naked one and it's a strictly professional relationship between the nurses and me. But I have to try and give it a positive spin. Divine retribution follows an hour later, just before what happens in the next paragraph. I should have brought that cane.

So I wake up in that ambulance and I am trying to piece together the situation. AJ is right there with me, but I have no clue how I got here. I am calm and start to look for clues. I realize I don't remember too much. One of the first things that comes back is the idea that I have ALS. I think I ask for confirmation; this can't be, ALS is a really bad thing. The name of my blog floats to mind and I realize it's true. I start to cry; it feels like a bad dream just came true. God, what a nasty moment. I recall the name of my daughter, what a proud moment!, and want to tell AJ, but he is just out of reach. Next, I remember that Holland lost on penalties – when I offer that information, the medic tells me it is OK to stop talking.

What just happened, is a true "remember Sammy Jankins" moment. Did you see Memento, that movie about a guy with amnesia? In almost every single scene, he transforms from a happy and open individual into a man with a burden and a mission, when his tattoos remind him of what he thinks is reality. I am fine now, my memory is back, except for the fall itself. Four new stitches in my chin and another point scored in Utrecht-Amsterdam. It's now 0-2 because the first aid people over here talk to you and handle you with love (which I didn't feel so much in the Amsterdam emergency room). The moment I am trying to get back to is that moment in the ambulance where I briefly didn't know I had ALS. I remember the shock of realizing it again for the first time, but I can't get back to that blissful ignorance.

But hey, only bad guys close their eyes for the truth.

In the words of Shawn Carter, lyrical poet and creator of statements so true that they border on the mathematical, to mention just one: "I've got 99 problems but a bitch ain't one" (because I don't have a dog), anyway, in his words: thank you, thank you, thank you, you're far too kind. My last post, which for English-only readers has been translated and put to music by Denis Leary resulting in this song, unleashed such enthusiastic responses that I can't help but take to the stage again, grab that mic, drop it like it's hot because I can't hold on to anything these days, and spit down my next verse because that's what I do with excess saliva.

So how you feelin', G? Well, weak. I was trying to undo and tighten the velcro on my wrist-brace. Try as I might, I wasn't getting anywhere. Luckily, Anna was there to help me out. She pried it loose, tightened it with force I don't have anymore, and smiled the loveliest of smiles when she was done helping me. Anna is three years old. Then she gently touches the scar on my knee and asks: Au? No, it doesn't hurt. It's ok. Thank you.

It's been getting slower and slower, a keyboard;

my friends

it's not that i don't want to hear from you

au contraire

but i can't

move my fingers

fast enough to mail you all

In fact, I've been writing this post for two weeks, seriously, that's how slow it is nowadays. Although, truth be told, I did take some breaks between paragraphs. Ha! Only four more weeks before Zomer is due. The price of having the ability to swaffel is never knowing what being pregnant feels like… I envy Iris. I know a milder form of pregnancy; words and thoughts fill up my head and my belly and I can't get them out. How did communication get so difficult? Good thing help is on the way. Soon I will control a keyboard with my eyes. Interestingly enough, as an artifact of Dutch healthcare (note how I don't call it a healthcare system), the guy who designs my eye-control-solution is the same guy who sells it to me is the same guy who asks the insurance company for reimbursement IS THE SAME GUY who decides if it should be reimbursed. Governance best practice. Of course, he only sells one solution which is probably not the one I'm going to like best. But hey, it'll just be my only way of communicating with the outside world. At least our country pays for it…

But where was I? Oh right, pregnancy.

"We need a clothing iron."

"We have 2… "

"Yes, but they are 10 years old and broken."

"Perhaps they were broken because they were never used?"

"I'm buying a new one"

Ah, nesting instinct.. Cindy recalls this particular hormone: the only week in her life she ironed anything. Not that I'm complaining; if I can buy this nesting hormone and secretly feed it to Iris, the house will always be tidy and my clothes will always look beautiful.

"And the amuse for dessert is a small shake of elderflower." Somehow, the event where I was supposed to thank my colleagues got turned around and they spent the entire evening thanking me. We're in our favourite restaurant and the conversation turns to: how would you describe elderflower? I close my eyes and taste – the answer arises in my memory. Roadside. A small road somewhere in Limburg. I'm not even 8 years old, my big tall sisters are harvesting the little berries and warn me that they are poisonous until you cook them. Later, we taste the home-made elderflower syrup at dessert over semolina pudding. Youth is for storing pure experiences that creative and ambitious cooks can try to evoke later on in life. Imagine you never smelled a cave or a farm or smelly feet – how would you ever describe cheese? What would wine smell like if you had never raked leaves?

The youth of Zomer will be filled with as many different smells and sights as we can afford her to experience.

To conclude, here's a little riddle I wrote when we just got back from Mt. Ventoux, about a month ago already:

Not all paragraphs have to make sense on the first read though – I can already see you wondering, "What is this note?". Really, it's not that hard, it's a piece of cake. I'll give you a clue: it starts with Part II. That's where I'm at now – trying to make sure he can't get my soul. And Iris being here, that helps: baby, in this world of shit, you are it. It's all right. The next one isn't so easy though – jungle telegraph isn't a common phrase these days… Ah, Zomer, send me some lovin', I can't wait for you to come out. Even if I can't be there to defend you from some random bus stop boxer… you'll prove something to the world. Before we know it you'll be in puberty, you'll turn into a beautiful teenage witch. I dont think that I can resist… I'll stick around as a friendly ghost to help you out. You know what they say: if you're scared to die, you'd better not be scared to live. Now, on to Part I. Is this making sense yet or are you just waiting for it to end? Aw yeah (that's a free extra clue that actually messes up the schema). I'm tired, we  just got back from France – not that I did any work, it was all woman driving man sleeping. My job was just looking for the toll money to pay. It was such a fresh feeling, being out there on that Mt. Ventoux in the morning dew. I'm here to tell you about that whole ALS thing. As it turns out, that's not really funny. I almost always laugh but right now it's just getting annoying like nothing else, and that's scary, because if it can get annoying, what else can it get? Anyway, your final clue: remember that post "Life ain't pretty for a dog-faced boy"? Jesus can't save me, but the first full decryption will get a bottle of Dom Perignon.

Your answers in the comments please!

See it if you can.

Conversation at the pool, enjoying the sun, earlier this week:

"Iris?"

"Yes?"

"Upon which set of values and principles should we build the rules and directives for the Raising of our Daughter?"

"That's simple. On mine. Saves us a lot of arguments too."

Also at the pool:

"One-zero."

Hm?

"One-one!"

Wtf?

"It's a soccer match in my belly, I'm just keeping score".

Later that evening we want to watch a movie and she's just all over the place. Womb. You get the idea. Iris places my hand on her belly. A minute later her skin gets hard right underneath my hand and the movement stops: peace… Zomer snuggled either her head or her butt into my hand right through Iris' skin. We watch the movie like this and it is heaven. I am SUCH a SUPER PROUD DAD.

The next conversation happened, word for word, during dinner last night:

Y: "That Playboy party, it was…"

Me: "Let me interrupt you right there. You were at a Playboy party? First, invite me next time. Second, how did you get in?"

Y: "Well, my girlfriend at the time was in the magazine."

Me: "You dated a PLAYMATE?!?!"

Y: "Three, actually… when I was younger."

Me: "…"

Anyway, about that Playboy party: it sucked. And he's all grown up now, a father, 27 years old, and one of the nicest people I know. So if you want to date a playmate, just be one of the nicest people, apparently that works.

A few weeks ago at my birthday party. Martijn checks his smartwatch. AJ next to him sighs: "That's how things go nowadays. We look at our watch for an SMS and we look at our phone for the time.". Later that evening, all of us drunk, AJ will interrupt me when I finally manage to join the group discussion. It's such a gift – he knows he's probably the only one who can get away with interrupting me… like he's saying: fuck you, you may have ALS but you're still the same to me, and I get it. It's a gift. To the rest of y'all, if you don't let me finish my sentences, I'll set Bernt on you, he's still got the muscles I had (and more, who am I kidding).

I should write something more real. This macho stuff and writing down snippets of my life that make me pause aren't distilled enough. Like thoughts half formed, .

Friendship. A small example of a real thought half formed.

We take a separate room when we "discuss", but we aren't fooling anyone: we hate each other's opinion, each other's methods, each other's thoughts, we hate each other. To the core. Either that guy goes or I go. We fight all day and we fight all night and on the weekends we both call Matthew to complain about the OTHER guy; he wearily counsels us back to peace. For a day or so – and then it's Monday, and we fly to Dublin again, Alexander and Karsten and myself, and Alexander and me continue our fight while Karsten has to do the entire project on his own, shaking his head and wondering who ever put us together. Thrupoint did, that's who. It's the winter of 2003 and it's my last assignment with this company. One time I frustrate Alexander to the point where he screams "When I worked at Accenture, I had two Ph.D's to shine my shoes!" and I yell back that he should have stayed there and that someone please remind me never to go to a company like THAT. Over time, we thaw a bit; we discover a shared love for sushi and casinos, I watch the little guy (Karsten; I remember thinking "where's the rest?" when I met him) drink a pint faster than Alexander drinks a half-pint, we actually crack the case: our recommendations are implemented and deliver huge improvements for our customer, we never say it out loud but by the time I quit Thrupoint in April 2004, we have developed a respect which actually grows into love over time. Brothers in arms, type of thing, I guess – it was a pretty intense time. We don't lose track but we also don't see each other again except once in '06 – when I desparately try not to seem desperate about wanting to join the company they both started to work for. God, I was unhappy at Orange.

And then, their gift for my 37th birthday arrives: a day at the track with a Ferrari, a Lamborghini and an Aston Martin!! I get a call from that same old Karsten. Guess who he's standing next to? That same old Alexander. They still work as a team. And they're coming over. Utrecht, hide your sushi and your casinos! Old friends should never be forgotten – and ALS is a nice excuse to relive old memories and create a few good ones for the future.

Take note – it’s a SONG, not a promise. And it’s such a good and subtle song. Listen it. It’s got nothing to do with today’s post though.

A selection of moments from the previous weeks

We appeared on Pauw & Witteman (big late night show in NL). The table was full with RJ and Bernard and they get the story across just fine. Yes, I was a bit jealous not to sit there myself but serving my ego is not the purpose of our joint quest, so I was really happy to enjoy the experience and see that it helps MinE. See the interview here (in Dutch):

http://pauwenwitteman.vara.nl/media/313165

An email from the facilities desk. I’ve ordered new business cards with “Garmt van Soest – kicking ALS in the balls” and that does not conform to our policies. Compliance police! After three escalations we get to someone that can approve this exception. His worry: well, people might mistake ALS for Accenture Learning Solutions… So now I get business cards that say “Kicking ALS in the balls” with a small asterisk after ALS and fine print at the bottom explaining that ALS is a disease and that I am not kicking our own solution in the balls.

Sitting with Menko on our terrace, I wish, not for the first time, that we had a personal biographer – someone ought to capture our conversations for future generations to exegesise.

“The world is getting smaller. One small walk through the city and I have to stop for breath three times…”

“Actually, the world is getting bigger. Things that were close once are now a whole journey away.”

I smile and feel elated. I don’t mind travelling. I was afraid I would have seen the whole world by the time I’m 40 and just like this I learn there’s new discoveries waiting for me, everywhere, on the way from here to the supermarket, everything. Later that evening Menko puts on my socks with such gentle care, not better but so different than Iris. It’s nice to feel loved.

Today

I was just in a room with a guy who started the meeting by saying “I am responsible for managing 22 billion pounds of investments and wrote about 950 million in checks for charity last year”. My biggest check to charity ever was less than 0,0002% of that. Two other guys in that room are together responsible for nearly 500 published articles on ALS and the like – and I write a blog. And I felt perfectly at ease in this setting. After all, I got the meeting together (with lots of help, but still). Right now I am trying to open the yoghurt I bought for breakfast. It’s noon and I’ve been up for 8 hours. I can’t. I grin. I can call a world class meeting but I can’t open my yoghurt. I almost laugh out loud! Cackling, I finally manage to stab the thing open with my spoon and get most of the yoghurt in my mouth. I’m also dressed to kill so the contrast between clochard-like mad behavior and million dollar looks (who said I was modest) convinces the old lady next to me that I am a devil, if not THE devil.

Henrik replies to the previous post: Ik wil ook niet dat het al voorbij is, voor jou en voor mij, en dat is het ook nog niet, voor ons beiden niet. (I don’t want it to be over either, for you and for me, and it isn’t yet, for neither of us).

Today, I also tip over a glass of water all over me and my precious suit. Twice. In one day. In a plane. Both times.

The guy is… annoying, but he is a buyer. We shake hands after an hour of negotiations: our house is SOLD! Time for a beer! Iris did it!! She bought AND sold our house… while being pregnant and overworked. Man this woman is… something.

Some other bits and bobs

It’s a shame that I can’t share too much about what’s going on in the fight. It’s really, really, really cool though. Check out our latest thing: http://alsinvestorsday.org/. The short version: give me 10 million and 8 years from now I’ll give you 25 million back, ah, and also a medicine for ALS. Smaller investments are also welcome. Do you know anyone who is interested? Put them in touch so we can invite them to join us on May 19.

And finally, Juel told the story of our last supper and you can hear it here:

Thrown to the ground, a piece of flying fur from her skin marks where stood alive and well a micro-instant earlier. The sound of the gun is so loud and at the same time inappropriately muffled for a life-taking event as this. Vegetarians and readers with a weak stomach may wish to skip this post.

The young deer's curiosity was her downfall; her instincts to run away interrupted by her desire to look at us, look right at us, eye contact… Paul's bullet hit her less than an inch from target, in and out, right through her, killing her near-instantly, faster even than you can sigh at your smartphone. After sawing open her sternum at the butcher we'll see that the impact of the shot broke six of her ribs.

Four hours later. We're packed up and ready to go. Another hunter asks: "Did you enjoy that today?". Paul answers, truthfully, "Enjoy, doesn't really cover the full range of emotions". We all laugh (why??) and drive off in our rented super-expensive Range Rover that I can't drive (something about the small print in the rental agreement – what's next, I can't even get life insurance anymore?!), in search of our next big experience.

Two days earlier. We sip whisky and stare at the fireplace in this Scottish castle that we're staying in on our way to Winston Churchill Venison. Uncharacteristically, I have not done _any_ preparation for this holiday so it only occurs to me now that we are really about to embark on a hunting trip. Where we potentially kill living beings. I muse that I'm not certain if I want to lose my innocence. I don't think I've ever killed a mammal before – the seed for my 11 year stint as a vegetarian was sown when I didn't want to help kill our own chickens. I don't want to close my eyes for any part of the process that goes before products I consume (good luck shopping at H&M, then, or taking life-saving drugs that were toxicity-tested on monkeys (that is, all live-saving drugs) but I digress). And for that same argument, that my friends remind me of, right there at the fireplace, I remember that refusing to kill but accepting meat as food is hypocrisy. Nothing wrong with hypocrisy, nations are founded on it, but I've lost that innocence the moment I ate dear steak so I might as well kill the animal, too. At least the ones that we'll hunt have lived a good life, the kill is clean and quick, there are way too many of them around, etc etc.

The last thing Angus says before we get out of the car is "and now we are silent". The car door closes and I am in a different world, immediately. Our guide has been hunting for 17 years and got his first kill 13 years ago. He's 24 and moves completely at ease, like he's strolling in the park. There's an absence of sound around him that makes me all the more aware of each decibel I produce. His gaze scans the horizon and one of the first things I notice, besides the fact that I notice everything in high-def, attuned to nature like I have not often been before (see footnote 1), is that everything looks like a deer. A tree stump at the horizon – that's not a deer. That sound – is not a deer. A bush that – no, is not a deer. We creep for an hour, I see more than 65,536 colors of moss and this forest is so beautiful that the walk alone is worth the drive. Then, Angus points to distant fog – look, deer! We're lying when we whisper "ah, yes, I see". Half an hour of creeping and crawling later and I can just see them run off through the scope of the gun – not certain that I'll kill if I shoot when they move (see footnote 2), so we go home with 0 shots fired. Still, it was a full hunting experience – so close to nature, so close to life, so close to death, I struggle to explain, but at least I get it. You can hunt in harmony with Nature.

The next morning it's Paul's turn to carry the gun, and he will prove his true alpha once again by not just being the only one of us that fires a shot but also by gutting the animal completely with his bare hands. When we arrive at the young doe we snap a quick picture. We are sad to see the corpse; we're closer here than anywhere to life and death is a part of that, but it's sad. Angus appreciates that. This guy is a crack at what he does; he is honest, open, friendly, compassionate, he doesn't mention my ALS once but still finds the perfect way to accommodate it. I believe that he enjoys guiding people even more than hunting itself. Wow. And the unthinkable occurs – we teach him something! After taking out the intestines and organs we propose to bring back the heart. He's eaten kidney and liver but really, heart? Yes. Let's try.

Huddled around the electric barbecue we feast on breakfast made of venison burgers (from the fridge), together with Winston Churchill himself (Angus' dad) and friends. It's time to throw on our hunting trophies; the liver, heart and kidneys that were inside a live deer just hours ago sizzle on the hot plate. And damned if it's not true: Winston and Angus agree that the pieces of heart are actually one of the tastiest pieces of deer they've ever eaten. I've been at enough three star restaurants (see footnote 3) to know: this, right here, right now, is what ambitious chefs try to echo in their liquidized smokescreens of cuisine: purity doesn't get more pure than this. And we're hear to experience it. And I know that it's 99.95% luck that I get to enjoy this. Have you seen American Beauty? Sometimes there's so much wonderful in the world that I'm afraid my heart will burst.

The next evening, we call the ultimate alpha-male: Kenyon, my brother in law, who used to hunt wild pigs with a knife. If that sounds like a joke, you try it, and if you're lucky enough to climb up the tree fast enough after the pig has killed your dog and comes for you, you may just live through it. Pigs are smart, remember. Anyway, we proudly tell him "WE WENT HUNTING AND SHOT SOMETHING!!!!!!"; it takes him just one question to put us in our place: "Was it bigger then you? No? Then it doesn't count".

Enough for today, damn it these hurting hands suck. Greetings from Crete, I am here with Iris and Zomer, and this story was about our previous holiday, with M and M (who shan't be named as his customers read my blog and I can't just go around sharing his penis size and favorite brand of champagne – apologies for that, honestly) and P.

Cheers all, time for dinner!

Footnote 1: Let me explain to you what kind of a nature child I am. One sunday, years ago, I'm kitesurfing. I wipe out and hit my head, hard. When I see again I see all white with one grey line perfectly vertical through my field of vision. My first thought, and I wish I was joking, but sadly, I'm not, is: my monitor is broken. I am lying in the North Sea, on my back, surrounded by waves, looking at sky and a line of my kitesurfing gear and I think: that must be a broken monitor, that grey line looks like a broken VGA card. I have nice pictures of me riding waves looking all cool with cool sunglasses and a grin on my face and a tattoo on my arm and a hot kitesurfing chick in the background, but I am a computernerd deep down, or at least I was.

Footnote 2: It would have broken the flow of the story there to say the truth, which was "I could barely get my eye lined up with the scope before they were out of sight".

Footnote 3: Some people think I boast too much on this blog. That's because they don't know me well enough. I just share what I enjoy, I leave out the stuff that's really boastworthy. Picture me saying this with a straight face.

Footnote 4: Our house is for sale – know anyone who's interested?

Footnote 5: Did you realize how appropriate that subject line is?

Footnote 6: pictures below.

She's taking "you gotta fight for your right to party" pretty seriously.

Ladies and gentlemen, we have a working name, and it's Zomer, Dutch for Summer, as that is when she'll be born.

And this mail is just to be a gleeful dad who just felt her kick for the first time, all the way through layers of Iris.

OK, move on now, nothing to see here.

People ask me how come I don't write about Iris so much anymore? Well, that's simple. Like the christian god, I'm jealous, so I want to keep her all to myself. ALL FOR ME MUHAHAHA!

Well, that, and that I have two diseases (note – not the flu). But let me tell you about the best moment of 2014. It's a bit cliche but it's true.

Nekplooimeting. Yes, fuck you, Google Translate, nekplooimeting. I'm not even going to try. I think it boils down to: ultrasonography. We went there for our fourth one, and you know, if you've seen one, you've seen 'em all. Is what you think for the first 25 seconds. And then your… child… pops… up… on…. thescreen. WTF. I'm in love. With pixels. I haven't been in love with pixels since I first managed to execute '10 print "hello" 20 goto 10'. I'm in love. The pixels move and the kid is, what's (s)he doing, jumping? Now (s)he's eating? The thing is 13 weeks old and already has a stomach and a bladder? It's scratching its head? Or is it mimicking holding a smartphone to its ear?

Then – dig this. The outline of the womb is clearly visible. Blood vessels surround it; some of the bigger ones expand and shrink by the heartbeat of Iris. At some points this has the effect of the womb denting in and out in a tiny spot on the rythm or her heartbeat. The baby is just 6.5 cm long but it's smart enough to find that spot and lay its head against it. Its head rocks on the beat of Iris' heart whilke we see its own heart beating, twice as fast, on the same screen. Baby lays its head there and rocks. Is rocked. His head is rocked by Iris heartbeat.

(I didn't want to send out this update. I'm usually content with how I describe with what's going on inside of me. This time it feels like nothing does justice to what's going on inside of me when I remember that picture, his/her head rocking. And at the same time, it's nothing special, people get kids every day, and then, this one is just pixels, and black and white at that, I mean c'mon, CGA has four colors and was invented in '81, what are we talking about here. Well. The untalkable apparently. Here's how I tried anyway)

To say "that rocks" is to make a joke of the images that stay with me, every day and every night, each time something else becomes impossible, each button I can't open or tie I can't tie or bag I can't carry, in bed at night as the memories of the day join up to gang up on me and drag me away from the now. Then I see the baby rocking its head and the belly of Iris can drag me right back to the here. I'm not afraid of anything here next to her. Just afraid that I want too much – I want to be a good father and a super husband and in the time left I wouldn't mind kicking ALS in the balls. In times of stress I revert back to my default behavior, though, and I grew up learning that you spend the least time with the people that are the most important to you, and I try to unlearn that every day, but it's so much easier to pitch our investment fund to a guy who should know this better than me but doesn't and that's why he listens to me and that's how we put another brick in the wall that'll capture this beast so we can kill it than it is to be home in time and be the person you think you'd like to be because if you can't even make your wife the happiest person in the world what business have you got laying a claim to parenthood? Ten points if you didn't have to reread that line.

Are you getting tired of hearing this? It's so silent lately. Like everyone's gotten used to it. Everything back to normal. Yeah, we've heard sappy parent stories before. I know. But seriously, I mean, today Iris' belly POPPED OUT. No joke. You could almost hear it. Up until 8.58AM this morning there was no visible sign of pregnancy anywhere on her (grey hairs on me but I digress) and at 08.59AM she comes up the stairs and says LOOK! And wtf she's looking like a pregnant woman all of a sudden. Seriously, even the most hardcore nerd out there should think that that's cool.

People, a public promise. As of July 1 I will go on 80% leave for at least two months. Why not 100%? Because I don't want to make Iris suffer the burden of having me around 24/7. But the rest of the time I want to be there and drink in every single second of Iris and our child like some of the big men that surround me showed how to do (Ivo, that's you).

Hey, you know what? That tower of Pisa is really almost tipping over. Almost. Like it's beckoning you. Asking you. Pleading you to get closer. Seducing you to lean against it. To give it a push. To topple it over. To give it the rest it so desparately craves. It wants to sleep, that tower, you can tell if you pay attention. My manager and I, we heard its silent cry, and sat scheming in a bar thursday night at beer o'clock, cross-eyed, wildly gesturing widely, estimating the required size of the truck that could generate enough momentum for that critical push, almost like we were boasting about an imaginary fishing trip (mine was THIS BIG!!), trying to google on our nonworking phones where to steal said truck, the only real risk to our plan coming out of our quickly executed Accenture-approved risk attenuation target scheme/assessment structure solution (r.a.t.s./a.s.s.) the possibility of some random Italian cop giving us an alcohol test while we're wrapping the tug of our truck around the top of the tower. I mean, I don't know the Italian word for ALS, so how would I excuse myself out of this one? Excuse-ah mi, sir, but I just want to achieve world fame? And… Did you also know that despite the crooked-ness of that tower the flagpole on the top is as vertical as could be? Wow, man, I mean, wow.

So, huge fucking headache the next morning and still on the plane back to Amsterdam. Set a new record for oversleeping – my manager had to call me up _three times_ to ask where the hell I am and when I finally did get down: no more breakfast. Boo fucking hoo. Did I mention this post is not for children?

Tripped earlier this week and landed on my right fist which nicely drove its way into my ribcage to bruise one of my ribs. Don't laugh or I'll laugh with you and – OW. That hurts. Just like sneezing. Or choking.

I managed to get through an excellent dinner (preceding our Pisa-tower-scheming frenzy) with only three occasions of beer or wine fountaining from my lips as result of a hiccup. Trust me, in this restaurant, it was the only way to get the attention of the waiter. And he has to be polite or I'll actively target him next time. At least I've not once dropped my cutlery this time.

My manager isn't bothered by my breaches of etiquette – then why am I? It's not like I'm doing this on purpose. It's good for mindfullness training, actually, I've never been so constantly and continously aware of every movement any muscle in my arms or face make as when I am eating in a restaurant with a half-limp right hand (God I want steak! Fat chance, suppose you could even cut it you can't chew it anyways. etc) and a tongue that doesn't speak for a while after each course. Oh, how I will have tears of laughter down my face, when I read this in a few years, and imagine I let _THIS_ upset me. Later, back in Utrecht, in one of the most excellent evenings I've had for a long time I work out with Juel why I was apologizing for spraying beer and dropping forks. Because the very best way to show that it's not bothering anyone is to ignore it when it happens, as my manager does expertly; then; I apologise because it gives me a moment to talk about it and learn how to deal with it. Because other people are mostly dealing with it just fine – I still have to get used to it. And that never gets old.

Last week I went to see the company doctor. "Hello doctor!", as I enter the room. "Hello Garmt. Do I see it correctly that you are favoring the use of your left hand these days?" – she spots and sees through me within a second. So I answer: "Yes, that is correct. What shall we talk about today?".

The body is attracting a lot of attention these days. Stumbling, tremors, that stupid right hand, really, I gotta speak to the manager, is there warranty on this thing?, the conscious effort that talking takes nowadays. So I relish the evening with Juel, time with a special friend, time to escape for a bit, we reboot our friendship and she gives me an insanely special wedding gift (just a tad overdue), I make it way too late, I am aware that it's already 3 AM and I have still not prepared for tomorrow. In 5 hours Gerard will pick me up and we'll drive to my old University where 40-or-so Business Leaders that did the same MBA as I did will gather because I shouted "Hey, guys, I'm dying, come help". Big names are there, the dean himself got right off the plane from Toronto and is hosting the day, the professor is there, all ready to solve the problem of ALS. As I lay staring at my alarm clock, counting the hours left to Gerard's pick-up, I wonder: why do I give myself this stress? Why didn't I just prepare properly with enough time and attention? I know what enough should be and it totally doesn't feel like I'm there yet. And then I realise: I give myself this stress because I'm an adrenalin junkie. Yeah, I know all of you knew that, but some lessons are hard for me to learn.

Five hours later I get in the car with Gerard, another 10 hours later I am delivered back home, tired like fuck. Enough Business Leaders thanked me to convince me that the day was worth their while. Maybe I didn't do it so well as I wanted to but I think I can allow myself to be happy. Five or so attendees manage to escape without an action point and the rest is now enlisted in the fight. Roughly 6000 people on Twitter saw #mbals. Not a bad score for the day, in terms of result for "the" fight. Even better is the result for "my" fight. I don't know if I can call ALL of these people my friends, but they were there, and I could see care and worry and, I think, love, in the eyes of every single person attending today. THAT fuels my fight. Nicolas, holy crap, you came here from Colombia for this day. Marinus, you have a day job and kids, where do you find time for that marketing plan? I shouldn't name names because I always forget the most important ones… And once again the words "thank you" seem insufficient. Thank you.

To be precise, approximately somewhere around July 22, 2014:

Everything is details compared to this. We are so, so lucky. And – yes, what you're thinking is correct. We had sex. But just once, honestly. 

Gaion is my 5-year old nephew from New Zealand. I'm sorry folks, it's not like I'm making these names up. "Gaion and Metis and Garmt go on a great wild adventure" sounds like "can I buy a vowel please". And as REM is as appropriate for the lad in the former post, Eels figures perfectly with this one, or at least the particular song Saturday Morning does – other than that he's more a "Metallica plays Shiny Happy People"-type of kid. I have yet to meet the stoic that can keep his cool in the vincinity of this tight-bundled ball of red-headed excitement. People say he's just like me but that's not true, he's such a pleasure to be around. Meeting a tiny version of yourself with Tompkins genes in the mix wasn't the horror I expected it to be at all and it's not like his level of activity is rubbing off on me at all, not at all no, he's just got me going at 1200 words per minute right now so if you can't make sense of what the hell is going on, all I can say is, join the club. That's what he does to you – turns your world inside out. Just 6 hours ago I was reading him a bedtime story. Go on, try to guess, what does a 5-year old kid wants to be read as a bedtime story? Wrong. Wrong. No. Wrong again. Stop guessing. It's Iris' brain poster. As he lies there on the mattress all snuggled up with his knuffel I read out the name of each and every cerebral artery and nerve and only when I'm completely and 100% done is he content to close his eyes and doze off in less than an instant. Now it's 04.15h and he kicks open the door and wrestles his way into our bed (this guy is the most aggressive sleeper I've ever seen) and then announces three hours later (which he spent blissfully sleeping while kicking Iris and me in the kidneys) that he's got exactly three aunts and it's time to start eating, now please. We make a kiwi milkshake and a banana milkshake for breakfast (which, when shaken properly, by the muscles of this guy, end up evenly covering the floor, kitchen, ceiling and walls – perfect!) and when we combine them they are hailed to be SUPER LEKKER! with more enthusiasm than I've ever had the energy for myself. We've produced about a gallon of milkshake of which after the beforementioned shaking about half is available for consumption. I see this guy, about a third of my size, prove science wrong, when he swallows down TWICE as much milkshake as me. We burp and look at each other and see the day spread out in front of us, more clean and fresh and open and peaceful than I've seen a day in a long time, and I ask him: what shall we do today, Gaion? Everything seems possible and every answer is perfect, in fact, this whole sleepover is just that.

Bobby McFerrin is a genius, ladies and gentlemen. Go on, watch that, it's only three minutes long and you're guaranteed to get a smile. For those of you who didn't study an exact science: the blue underlined text is a link, if you click on it, with your mouse, or your trackpad, or whatever else makes the little arrow on your screen move, it takes you to a place on the big worldwide web, also known in popular fashion as the "Internet". This is not a useless paragraph as I have at least one reader that I needed to explain this concept to. But really. Watch it. You'll need it to get through the rest of this post.

So I go to the hospital for another research project. Grip strength of my right hand is now 25% of what it once was. No wonder masturbating is getting difficult. But don't worry, you're married to Iris, be happy! Sing along folks! Don't worry, be happy man. I'm here in the hospital to do a baseline measurement and from then on every three months, to chart my decline. Like a photographer getting some nice stills of the El Al boeing descending into the Bijlmer.

Lung capacity is at 6.6 liters. That's a lot. Only 200ml less than the first measurements. But hey, these measurements are not an exact science, so don't worry, be happy man!

You do it to yourself. And that's what really hurts. Radiohead. If I just took a bit more time to rest, to meditate, to work out, to go spinning, etc. Etc. But I'm so.. yeah, we heard that, tired. C'mon. You do it to yourself. I believe that. I also believe more and more what my fellow patient Robbert Jan told me: ALS is more a mental than a physical challenge.

I made a lot of notes that will make a nice happy post – just not this time 'round. I am happy, though, really. It sounds odd but I am, underneath a small layer of cynicism that'll rub off soon. I still stop to enjoy a breath of air. Thich Nhat Hanh gave a lecture to a bunch of kids. Asked them: What's better than a scoop of ice cream? Two scoops of ice cream. And sometimes, what's even better than two scoops of ice cream? A breath. Hearing that I could taste that he was right. I don't think I've had a real enlightenment experience yet but that speech gave me a lot of peace, right there. He explained it in a way that only he could, to make me understand. A lungful of breath can be better than the best Italian ice cream you've ever tasted. Why whine for more if you have that?

One funny closing story to wrap up with. Sometimes I'm not sure if I really informed everyone that I should – in particular, people that once meant a lot to me but that I'm now out of touch with. I mean, if the situation was the other way around I'd like to know. My first zen teacher for instance. Or coaches. I had a bunch of them, people who help you figure out how to find your way in life and listen to your own inner beautiful sunflower. It helped me, I owe them a good chunk of my mental wellbeing (although yeah, this post isn't the best example 🙂 ).

So this one coach (NOT a Zen teacher), I hadn't spoken to him in a few years, I thought he might want to know. Turns out: he didn't. In his reply he explained to me why he was angry at my email: why am I bringing more suffering to his life that is already SO hard: "I mean, really, Garmt, you have no idea how painful it is to live a life like a Coach and a Teacher, I don't mean to sound ungrateful that all my muscles are fine, but really, it is just SO DIFFICULT for me!, so stop bothering me, oh and here are some canned words of wisdom that are supposed to help but really only convey my own despair." So guess what I told him? Can you hear the tune in the background? C'mon guys, you gotta know by now, let's go, stand up, wave your arms, sing along, top of your voice, start a polonaise, involve the whole block, here we go, as loud as you can, make him hear it: DON'T WORRY, BE HAPPY! Ah, that was good for a long laugh.

A George Michael lyric, of all the things to start with, but I couldn’t get it out of my head as I was walking across the square just outside our office today. Later that afternoon I came up with “I’m free…. to do whatever” but it’s not like the guys from Oasis are much of an improvement, character-wise, over George Michael.

So, freedom. To do whatever I want. If it sounds too good to be true – it’s probably Accenture.

After the diagnosis I had some concerns around what would happen with my job – the insurance that pays out to Iris if I die while employed is based on the clause "while employed”. That isn’t strictly speaking a guarantee: Accenture has the right to fire me if I’m ill for two years. Depending on social security isn’t that bad but still represents roughly a 50-60% paycut. So I was worried about that and some other details and I felt a bit nervous going in to the meeting with HR and my manager to hear what the result was.

The big one first – Iris’ “pension” is secured. I have it in writing here with me in a letter, signed and stamped, no-one will take this away from me: Accenture will do whatever it takes to make sure that once I do pass away Iris will receive a seriously good annual payment for the rest of her life.

Then the next big one. Whatever happens I will get my full salary for at least the next three and potentially five years to come. Maybe even more, depending on some technical details. That's more than twice what Accenture is obliged to do by law.

Another big one. I am relieved of all responsibilities: Accenture expects nothing more of me for the rest of my life. Lots of consideration has gone into this from their side and it took a good half hour before I really understood it. My manager never wants to be in the position where he has to say “Hey, Garmt, you were supposed to do this” – I have enough to worry about. I can spend the rest of my working life doing whatever I want, with full access to all of Accenture’s means and methods (and lease car and phone), their suggestion being: work to build your heritage that kicks ALS in the nuts. I can go kitesurfing or I can continue working. It’s just likely that I won’t get responsibility for a budget or a team anymore as that is considered stress they don’t want me to have. Accenture is giving me a platform to do whatever I want and wants to protect me from the workaholic within. Any other details are also covered.

I walk across the square in the sun, slower than I have ever walked, feeling lighter and more connected with the ground than I have ever felt, after hearing all this. I see people around me with frowns and scowls, in a hurry to do something, frustrated by their stress, the things they must, and I think: not me. I am free of all this. I am free to do whatever I want. I knew joining Accenture was the smartest thing I ever did for my career but this is more than anyone had ever expected. It’s a gift that goes way beyond what is considered fair. Gert calls this the dream job, and it has all the character traits of one, but like Sartre theorized: freedom is also…. frightening. He also theorized that hell is other people, but I’ve written enough posts about that already!

I speak to my manager again half an hour later and start to feel uneasy. I’m out of the rat race. I’m no longer striving for the at-the-very-top position. But I’m not broken yet! Which is exactly why they want to give this to me NOW, so I can enjoy all I want _while I can_. I’m free to use the Accenture network to get introduced to the CEO of Google and ask him to fund Project MinE. I’m also free to work on a project if I want. I’m just protected by a few rules that prevent me from doing what got me here – stress myself more than humanly possible. And that makes me feel castrated – like I’ll be a ghost strolling around the office, the guy with nothing to do but polish his job title, even though I know that I’m seeing ghosts and I’ve seen it in their eyes today, all and anything that these guys want is what is best FOR ME. Man I feel so ungrateful, I’m sorry. I’m getting to grips with the realisation that indeed my career is over. This was the top of the hill. In the most recent reorganisation I was made Strategy Senior Manager, all I ever hoped for (well, partner would have been good, but hey) and that is as good as it gets. Is this my pension? Isn’t it common for pensioners to feel useless? This is where I usually end the post with: fuck that, I’ll show ‘em. And I will. I’ve said it often enough: this disease will be sorry that he bit into my arm. Don’t you worry. But this huge gift did make my upcoming death more real and I just need a minute to get over that thankyouverymuch.

Eat and be merry for tomorrow you may die-t. Dietitians. Do we ever go to see them because we LIKE to?

You get where this is going: I had to go and see one, last week. It's a bit like visiting a priest, in one of those old movies, where you expect to get flogged with the schijf van vijf (Dutch equivalent of MyPlate or Eatwell Plate) and have to whisper a million hail-mary's for each Mars bars you've had.

Confession, then, is listing what you eat in an average day. And each time she says "… and?" you have to realise that there is an answer to that question – you actually eat so much more than you think. Semi-skimmed yoghurt with cereal. The salad bar at lunch. The cappuccino's with sugar. The cheese platter at night. The bags, no, what's the superlative degree of potato chips?, the nuts, the.. and I can go on.

Her look is stern, she doesn't seem that concerned but she is about to give me her verdict and tell me off. I can imagine the wagging finger, the triumphant look on Iris' face as she now has Doctor's Approval to snatch away my last remaining (yeah, i wish) sin against healthy living. She inhales and begins: well.. that semi-skimmed yoghurt. WTF – I'm not eating non-fat yoghurt, if that's what you're about to recommend me, I'll burn up this entire revalidatiecentrum and you along with it! Oh wait, she's telling me, what? That I'd better choose full-fat options from now on? And those potato chips – better have them each night? What? And nuts? And cheese? Lots of dairy? Ten eggs a week is fine? And lots of animal fats? She's telling me to eat MORE? Did she actually formulate the words that amounted to the fact that it's a good idea to eat snacks each night?

Maybe I should feel offended – what am I, Mr Creosote? No way. Right now I'm actually happy to have ALS. Bring on the jamon iberica, the manchego, the omelette for breakfast, the ground beef burgers that Iris is preparing right now in our kitchen (I had to explain to the butcher here, in Spanish, what minced meat is, in Holland the cheapest variety of animal product to be found, I wanted to make bolognaise sauce, so he said "aahhhh!!" and ground up half a kilo of prime rib steak). You're welcome to share one if you happen to be in the neighborhood.

Which, referring to the subject line here, incidentally, is the name of the Led Zeppelin song that I played about a year after I started on electric guitar, well, "played", I managed to squeeze out most of the notes, even the solo, although Iris would never actually call it "playing", it felt great, and after that I felt like I didn't need to play the guitar no more, since, hey, if you do a few Led Zeppelin songs and there are still no hordes of scantily clad nubile young women throwing themselves at you, what's the use? I actually need to look up what "nubile" means – I've heard the term being used in this fashion but I have no idea if I'm referring to nude women, women from the far and away country Nubiles or the regular kind i'll twist your balls off if you mess with me women. Anyway.