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!

Waar zit de pauzeknop?

OK, deze ronde is voor jou. Krijg ik nu een minuut om te ademen? Ik heb er genoeg van. Pauze. Someone please yell cut (famous last words van die acteur die doodging bij de opnames van the crow). But seriously. Hou godverdomme effe op. Take five. Wat is de magic word? Klootzak.


Het is niet dat ik al een week duizelig ben van andere medicijnen. Het is niet dat ik moet kiezen tussen kwijlen, slecht praten en klappertanden enerzijds of bijwerkingen anderzijds (zoals nooit meer een orgasme). Het is niet dat ik vijf keer per dag omval of het zat word om te huilen als ik weer eens mijn vriendenkring ondersproei met halfgekauwde hamburger. Ik snoot mijn neus en er kwam een stuk rode biet uit, daar kon ik dan wel weer om lachen. Het is ook niet dat ik maar drie mails per dag kan tikken en dat dat pijn doet. Het is ook niet dat elke blik op de buik van iris OOK een confrontatie is met wat ik allemaal niet zal kunnen doen met haar. Het is ook niet dat troostpogingen ("ze kan altijd nog op je buik liggen") het alleen erger maken. Het is niet dat ik bang ben te vergeten dingen voor het laatst te doen (zoals rennen, jammer joh) of dat traplopen lang duurt en doodeng is. Het is zelfs niet dat ik mezelf walgelijk vind om te zien als ik eet of lach of snotter of kwijl. Het is ook niet dat ik het schuldgevoel over wat zwangere Iris allemaal in haar eentje moet doen niet kan wegredeneren – laatst vouwde ik een mand was op en zag dat ik na anderhalf uur precies een theedoek had gevouwen (cynische lezers, dit is jullie out, als ik overdrijf kunnen jullie tenminste denken "zo erg is het heus niet"). Het is niet de pijn in mijn kuiten of de godvergeten tijdverspilling die de revalidatiefysio me aandoet door na drie bezoeken me het hooggeprijsde advies te geven "misschien moet je zelf op zoek naar een fysio die je kan masseren want daar ben ik te duur voor". Het is zelfs niet haar blatante onvermogen om te begrijpen dat de waarde van haar "behandeling" gewogen zou moeten worden aan het nut dat ik ervan ervaar; ze begrijpt en geeft toe dat het voor mij nutteloos is wat ze doet "maar zo is nu eenmaal de werkwijze van het revalidatiecentrum". Het is niet de pijn die ik mijn geliefden aandoe of de verlamming die me in aan het halen is.


Nee, dat is het allemaal niet.


Het is gewoon irritant dat ik langzaam maar zeker iemand word die nergens anders meer over kan lullen (als ik al kan lullen) dan dat gedoe met die ziekte. Omdat het af en toe lijkt alsof er in mijn leven nergens anders meer plek voor is. Als vriend of geliefde zou ik daar vroeg of laat ook genoeg van krijgen. Hoeveel lezen nog tot hier?


Dus kom, het is laat voor de tijd van het jaar, de tijd zit krap in haar heden…

Sad but true

We are driving home and it has been a fine day. A beautiful day, Lou Reed would say. A Bittersweet Symphony, the Verve would say. Kiss me, Tom Waits would say.


We are debating Tesla vs. BMW. Iris makes a lot of good points about its impracticality and I realize I'll probably have to choose against the fancy and hip Tesla. I get so sad; no cool new toy. I meta-realize how odd it is: I can feel such sadness at a Tesla being "taken away from me even though I never had it", whereas the notion that 50 years of my life were taken away from me even though I never had them hasn't really made me that sad.


I think back to earlier tonight. A gathering of various Accenture people active against ALS. First time in 6 months that we have all the different strands together. Except for Lucas and me, there is nobody that has the full picture. We spend two hours going over everything we do. Proto-types exist that were mere ideas 6 months ago, contributors from Switzerland and the USA on the call, the Japanese working group, the stakeholders that we have engaged at the highest level of our company, the results we have achieved with TRICALS and Qurit, the big-data design we are making for MinE, etc., etc. Every now and then, somebody can't help but burst into laughter or otherwise lose his professional composure, when we all see how ridiculously serious the contribution is that we have made in kicking ALS in the balls. I have a brief moment of insight that my efforts to activate have actually not been pointless. A warm glow surrounds me.


But I'm still dying.


That's what I realize, a little bit more, driving home with Iris and debating Tesla vs. BMW. As if I had just been meditating for hours, I see how empty my comfort strategies are and how impossible it is to understand the notion of death. I just get, and then only ever so rarely, that it is something so bad you can't even really realize it. I hold most of my tears until we are parked and after 10 minutes I can talk to Iris. As usual, she changes my reality with just a few lines. Death does take everything away from you in the end, but that's too big to grasp. But you can feel the little bites it takes, and those hurt. Like that stupid poem of Toon Hermans. Sad but true.