Old Man

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,

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 picture

Random friendship/galaxyguardianship

Zoe drinking her milk

Zoe drinking her milk

Roots, bloody roots

Roots, bloody roots

Will to power (van The Roots, niet van Nietzsche)

Als kind wilde ik sloper worden. En de zandberg afgraven, maar dat is een ander verhaal. Slopers rijden in van die ouderwetse flatbed pick-ups; ironisch dat ik, nu inmiddels al aan mijn achtste of negende BMW toe, ingehaald ben door een sloper.
Het gebeurde ergens in juni, denk ik. Ik schreef een huilpost, mag ik even pauze, vroeg ik. Kennelijk was dat zijn startschot: uitgespeeld? Mooi, mijn beurt.
Je wilt al weken bloggen over haar teentjes, die van quinoakorrel naar rijstkorrel naar tarwekorrel groeien, maar je bent te druk. Het voelt alsof er stukjes uit je ziel gelepeld worden, elke keer dat je geconfronteerd wordt met je onmacht, elke keer dat je haar ziet. Maar je wil haar zien.
Vrienden en collega’s zwemmen een fucking fenomenaal bedrag bij elkaar en je kunt ze niet eens passend bedanken.
Toen ze geboren werd liep je nog. Nu ben je een smoezelig figuur in een communistische rolstoel. Je komt bij het revalidatiecentrum en flapt er bijna uit: had ík maar een dwarslaesie, of iets anders dat went. Ik heb elke week een nieuwe handicap om mee te leren dealen. Al mijn broeken verbouwd zodat ik ze zelf open kan doen, het heeft exact drie maanden gewerkt. Krabben aan mijn hoofd doe ik met de muur; sinds een val komen mijn handen zo ver niet meer.
De thuiszorg heeft nu twee uur nodig voor ik schoon voor mijn ontbijt zit. Ingehaald; drie maanden terug was dat nog drie kwartier. Goeiemorgen Garmt, even kijken of ik het nog weet, voorzichtig met de vier bulten op je hoofd, je rechter heup, je gekneusde linker bovenarm, vergeet ik dan nog iets?
Bijna meer dan dertig vrienden verrichten onder leiding van schoonvader Ron een verhuizing die qua planning niet onderdoet voor een nucleaire ontmanteling. Een groter cadeau kreeg ik nog niet. Waarom stuur je ze niet even een bedankt? Waar ben je zo druk mee?
Je plant je agenda bomvol met zorgpassingen, hulpmiddel afleveringen, ruziën met zilveren kruis, oorlog voeren met de thuiszorg, pakketjes ontvangen, de laatste keer dronken worden zonder valsspelen, het pak ophalen waar je in begraven word, en je gooit alle afspraken weer uit je agenda omdat je rust nodig hebt. Je ligt weken achter met je email, in een Skype met de fabrikant van de oogbesturing in Amerika roepen ze hun collega’s erbij: look at this guy type!! Toch kost een tekst die Paul in tien minuten tikt mij anderhalf uur. Ingehaald. Ingehaald door een beeldhouwer die sneller schrijft dan jij. Wanhopig probeer je de illusie van iets van controle over je leven terug te krijgen, te grijpen, ik was toch een intelligente kerel, je hoeft het alleen maar te regelen, maar niemand verstaat je en mailen voelt als borduren, zo traag, en je verliest langzaam het overzicht, en je verstand.
Je kijkt naast je, waar je de liefde van je leven verwacht, en ziet haar aan de overkant van een ravijn. Wanhopig brul je: wat doe ik fout? En de engel van Toon Tellegen strijkt neer en fluistert: wil je een lijst, egoïst? Ik zucht. Dat gefluister…
Ingehaald. Ik probeer stijlvol te blijven, let op: ik heb de tequila slammer paradox opgelost. Wat is dat? Eenvoudig. Tequila slammer is niet lekker en toch drinken we het. De oplossing: we skippen gewoon de smaakpapillen. Een plastic buis, direct naar je maag, door je buikwand heen. Ik val sinds twee maanden een halve kilo af per week, en dat is niet de bedoeling. Straks ga ik het ziekenhuis in om een volgende stap te zetten in mijn transformatie tot cyborg, morgen om deze tijd steekt er permanent plastic uit me. Small price to pay: nooit meer lekker op je buik liggen. En het stemmetje in je achterhoofd zegt: weet je nog, die zus van die andere ALS patiënt, die ook ALS had, die overleed door de maagbuisoperatie. Ja, maar dat is heel zeldzaam. What are the odds? De kans is groter dat je een enge ongeneeslijke ziekte krijgt.
ALS is een slopende ziekte, en die gesloopte spieren zijn pas het begin. Ik sta in een brandende kathedraal die aan het instorten is, de brandweer is gebeld maar het water moet nog uitgevonden worden, ik probeer het meubilair nat te houden en mijn vriendschappen te redden, maar misschien wordt het tijd me terug te trekken in de schatkamer, hopelijk hebben mijn Dames daar op me gewacht, anders is het geen schatkamer meer.
Luctor et emergo, versus temper fugit. Ik geef me nog niet gewonnen.

How deep is your love

So John Frusciante used to play and sing that song as part of a Peppers show. Which goes to shw that even guitar geniuses can surffer from poor judgment. This is the first entry fully written and posted using eyes only.


Each time you go to Lowlands Festival you go for something familiar and something unexpected. I first went there, I think, in ’98?, as site crew, working backstage on odd jobs like driving trunkfulls of gaffa around or handing out rain ponchos to crew. I remember the disillusion when I went as a paid visitor for the first time; so much walking from parking to camping to mainstage to drinks, etc…


I got diagnosed with ALS a little over a year ago, just two weeks before the festival. Back then, nothing much was wrong except that I spoke a bit slower and I couldn’t throw my beer as far. Right now, 13 months later, I am waiting for the wheelchair to be delivered and I’m typing this text with my eyes. Temper fugit. So when my best friend Paul showed me two backstage passes for this year, I couldn’t wait to go there and carpe fucking diem. He had even called in a rare favor from his old friends at the on-site power supplier, getting us a gator.


So we went there and we had a blast. And the biggest unexpected thing I took away this year? Love. Everyone was so kind, so caring… I need help with a lot of things and that is usually not something busy crew is waiting for. My biggest fear is ending up as a bother to people, as an inconvenience, and not once did I feel like that, even though I constantly took time and attention from people who had a job to do. We showed up at crew catering ‘de kookvogels’, whom I worked with a few times, at the busiest time of the day, and all the chefs took time out to sit down and have a beer with us. These guys have seen ALS up close and that makes their warmth to me all the more impressive (would you want to be reminded?). I could have stayed there hugging these guys all weekend (which is slightly odd as close physical intimacy with sweaty unshaven men is not a regular hobby of mine, but I digress).


Later, stumbling onto the loading dock of the main stage, I was surprised again; two roadies put me on a dolly, pushed me right past the final frontier of Lowlands’ inner sanctum, yelling ‘he’s with the band!’ to get the security guard to jump out of their way. I had arrived on the back of the mainstage, right as one of the headliners were starting their set. The monitor-mixer gave me a glance and offered me the best seat in the house.


So much love and respect, from everyone working there, it was also reassuringly familiar that the VIP’s in the guest area ignored me alltogether; these are people who are too important to be nice, thankyouverymuch. In that same guest area we met one of the only real vip’s there; Camiel de Kruijf, without whom half the festival wouldn’t even be there. He’s a close friend of my best friend and made all of this possible for us. You don’t expect so many nice and caring people to work in the world of rock&roll, but there he is.


Since learning about my ALS I have tried hard to fight it; helping research (www.projectmine.com), becoming a partner in a company developing ALS drugs (www.treeway.nl), setting up an ALS investment fund (www.qurit.org)… The ice bucket challenge brings hope because it raises awareness and funds, which this fight needs. The love of my friends and strangers brings the energy to keep me alive and fighting. Thank you, Paul, and thank you, Camiel.