Isn’t she lovely

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Vaak zeg je, als je een baby een tijdje niet hebt gezien: “Wat ben je groot geworden!”. Vandaag niet. Bernt komt aangelopen met dochter Zoe en all I can think is: wat is ze klein geworden.

Ik was een grote jongen, fysiek aanwezig, is mij wel eens verteld. Vijf jaar klimsport en goede genen gaven mij onderarmen die niet in een gewoon overhemd pasten (elk excuus om maatkleding te laten maken moet je aangrijpen). Mijn borstkas herbergde 7,44 liter longinhoud (thans minder dan drie…). Anyway, you get the picture. Het toeval wil dat ik eigenlijk een schaalmodel ben, van mijn kleine maar veel grotere broer Bernt. Ik plus tien centimeter in elke richting plus een stel grote ringen is Bernt. We hebben evenveel tattoos, zelfs, en hij is niet gekrompen door de ALS. Dus in de armen van Bernt, die afgehakt en te drogen gehangen zo door kunnen gaan voor het soort jamon dat (of is het die? (mijn voornemen om een toegankelijke post te schrijven strandt bij deze)) ik uit Tarifa meenam toen ik daar op vakantie was, lijkt ze ineens meer op het propje dat uit Iris plopte dan op de grote meid die ze bijna acht maanden later was.
 
Donderdag, vandaag, is papadag, dan probeer ik met hulp een half etmaal de opvoeding te versjteren. Ik zag een tijdje terug hoe ontzettend aandachtig en liefdevol de gigantische vleesberg die Bernt is als hij voorover gebogen zit een potje eten kon geven aan onze dochter. Hij is een van haar engelbewaarders, dus ik nodigde hem uit om eens een papadag van mij over te nemen. Het is daarbij interessant om te bedenken of je iemand die in het dagelijks leven bomen met éénhand ontwortelt, zelf kindloos is, messen slijpen als hobby heeft en in het openbaar door kinderen aangesproken wordt met “meneermeneer, zat u in lord of the rings?”, of je zo iemand een plezier doet met poepluiers en gejengel dat, het moet gezegd worden, niet altijd per se noodzakelijk is in de context van het moment. Ik bedoel, je gaat niet dood, mens, je moet alleen drie seconden wachten op je volgende hapje couscousmetcourgette, en jij zit hier instant tranen te vergieten alsof je een bekeuring voor te hard rijden hebt gehad. Trut.
 
Anyway. De dag verloopt tot nu toe schitterend. Zoals ik eergisteren op 3fm liet zeggen, mijn grootste angst momenteel is om bitter en ongelukkig te worden van deze ziekte. Als ik ga mokken bij het genot dat anderen nog wel kunnen beleven maak ik mezelf snel onmogelijk. Bernt maakt het mogelijk voor mij, vandaag, om te genieten alsof ik haar zelf til, om te voelen alsof ze met mijn vingers speelt, om te ervaren hoe het is haar te voeren, te wassen… zoveel aandacht, liefde, en, grtrvrr, ze maakt bij hem haar eerste echte selfie!!, het is een mooie dag, en oh wat is ze lief. Isn’t she lovely, dus, van een LP van Stevie Wonder, want blogpostheaders gaan over liedjes of albums.
 
Voor wie er overheen las, eergisteren mocht ik langskomen bij jeugdvriend Paul Rabbering, op Hilversum drie. Wat was dat immens fijn, ontspannen, gezellig, leuk. Ik blijf maar bang voor het moment dat ik niet meer behandeld wordt als mens, dat men zich geen raad of houding weet te geven en, bijvoorbeeld, over me heen in plaats van met mij praat. In alles zie je dat ik daar gisteren in ieder geval niet bang voor hoefde te zijn. Het is een goede jongen, die Paul. Ik twijfelde of ik het hem zou vragen: wil je mijn blog noemen? Het is de enige plek waar ik me nog enigszins kan laten zien, en gezien worden is fijn. Paul noemde het; prompt rookte er in een datacenter een computer weg en was alsdantoch geslashdot. Vet! Je kunt het stukje terugzien door op dit LINKJE te klikken, of op de site van 3fm te lezen met dit linkje. 
 
Tot slot, gewoon omdat het een mooie dag is, een mooi waargebeurd verhaaltje van een Amerikaan. Niet voor de korte aandachtsspanne, maar als je effe hebt, ik vond hem cool.
 
 

 

Drill a Hole in That Substrate and Tell Me What You See

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

First, there are the keys. When the father of my father passed away at the tragically young age of 96, my dad found three shoeboxes of keys in his basement. Apparently, he had made it a hobby to collect cute old quaint little keys. He also collected just about everything else, so as a reminder to himself to take only the good traits from his dad’s character, my father took a few keyrings with him. He visited me the other week, to present my daughter and us with a gift: three keys from that set, each on a necklace, one for Iris, one for Zoe and one for me. It serves as a remembrance gift, to remind the bearer of me. Keys, you see, used to be my thing. As a kid, I took the keys from my mom’s purse, went outside, and started the car. I was three at the time. I don’t recall it myself, but wherever we went, I took keys that I saw and liked with me, often forcing my parents to drive back to friends with apologies and their home keys. So, as a reminder of my past, and because I found the key to Iris’ heart, Zoe gets a key necklace that was handpicked by her grandfather out of the stash from her great-grandfather. One of the most sensitive gestures I received this year. Thanks, dad.
 
Then, there is the book. Strictly speaking, this was also more a present for Zoe than for me, but… it feels like a huge gift to me as well. I write loads of stuff, but it’s all bits. Digital might be the future, but no USB stick has ever worked for the duration of even a single generation, while I have books that are four times my age. So, Judith wrote a book for Zoe. A fucking BOOK. Vera drew the illustrations, just like she drew our wedding invitation and Zoe’s birth card. I mean, a book. A book! A bookbook, as we are in the habit of saying when we try to signify something real and not redefined by a marketing budget. I really cannot say how incredibly pissed I am that she published a book before I did. Ha, no. We tried to read it and I cried at just about every other page. It is a picture book, the tale of a Lion, who hides, but is never invisible. It is the story of a Lion and Lione. It is the most touchable thing I have seen that I am certain Zoe will like and tell her about her dad.
 
Then, there was the epic holiday with epic friends. Given that we had an unbeatable history together of epicness, it is a pretty big achievement that we succeeded in adding yet another set of new high points to our movie-that-supposedly-plays-before-your-very-eyes-when-you-stumble-off-a-cliff-towards-your-doom-(only-to-catch-yourself-just-in-time-after-which-you-utter-whewthatwascloseIsawmylifeflashingbeforemyeyes). It wasn’t really a nice or relaxing holiday, I wouldn’t call it fun, instead, it was beautiful, in the way that a sad movie can be beautiful. We did our obligatory “Oh look, this cocktail is more expensive than my second car”-thing, but in all fairness, that was a Volkswagen, and starting it required a hammer, but still. We managed to enjoy a hot tub together, outside, with champagne, my first bath in eight or nine months. I cooked for and via my friends, Menko was not allowed to help, so I sighed “A general goes to war with the army he’s got” and eyetyped step by step instructions for Paul and Miga, and it wasn’t bad, even though the forestfruit-meringue turned into crumble and the melanzane was better when Iris cooked it and it broke my heart to see how little the average nurse knows about making coulis, but, anyway, we all enjoyed that dinner even if I didn’t eat any of it. We witnessed history at Bletchley Park, we cried together often, we intimately bared our souls with music and conversation, confessed our deepest regrets, debated that age old question again whether masturbation is jerking off or making love to yourself, we stared death in the eye and spat at her respectfully, we had a private piano improv slam in the best cocktail bar in the world, we were the best dressed men in the entire city of London, we took in the scenery, we solved shitloads of problems for the one of us who annoyingly had ALS, we loved each other in details and activities that an average marriage will never encounter. Ok, we didn’t sing, but we did fight, cry, pray, laugh, work and admire, like I said we should. I should point out the length to which my friends and nurse had to go to overcome the limitations one malfunctioning body puts on a group, but I cannot. Just reread that list of what we did and imagine doing that while carrying a drunk E.T. that is mumbling vital survival instructions in an E.T.-dialect that you haven’t quite mastered yet as you are from earth and E.T. is from wherever he came from.
 
And then, yesterday afternoon, an unexpected huge surprise. Zoe has been getting more demanding, in the way that Nirvana illustrated so charmingly, in that album that was about a baby too: here we are now, entertain us. And I don’t have a lot of ways to entertain her, and I can’t hold her well, so I really missed having her on my lap. She holds out for a few minutes at most before someone has to carry her away. Iris brings her to me and plays with her several times a day, and that is beautiful, but…  I dread the day that I am an uninteresting object to her. And on top of that she started to listen to nursery rhymes. I know, she is only a baby, but… my stereo was made for real music, dammit! Satisfactory epic win on both fronts yesterday. We strapped her to me and my chair so I could drive around with her, and the most amazing event occurred: she started to relax. Whether it was the driving or the record spinning on my turntable, she quietly enjoyed my company and the ride and then the guitar solos of The Black Keys. I recall one of the happiest times of my life, her first week, she in my arms, me playing her music, this very track actually, and I wonder… would she remember? Will she remember? On some subconscious level? I stop wondering and continue enjoying, this golden half hour with her, until the doorbell rings and it is time to get back to work.

 

Down in Albion

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why why what is god damn why does aaack. awful drooling from torture smells. every sound is like a dagger into my skull and there is so much noise i cant take it i gotta get away before fuck now i am angry and the only thing more frustrating than being unable to communicate is being unable to communicate when you are in a rage i cant even kick or scream everyone is torturing me i hate them. pain everywhere yet nothing hurts but everything is chaos and i cant think. i hate the world and especially the short circuit that my brain is right now. fuckFUCK. i wrestle free and ride to the most remote room.

in. out.
i am an island.
in, out.
deep, slow.
calm, at ease
smile, release.
present. wonderful. 
 
I have to work the mantra quite a few times before a smile appears and I feel release. Present moment reveals beauty in the noise. Why the heck is someone using a blender that sounds like an industrial jackhammer?
 
Oh, that’s right. Because my friends are trying to accomodate me for dinner. We drove all day in a rented wheelchair bus to this insane villa (with hot tub with hoist!) near Oxford so we could enjoy a potentially last holiday here. We even brought our own nurse, and Miga is blending the pear-and-blue-cheese salad so I can try and have a taste without choking. In the words of the famous poet Kiedis, and I quote from his better known work Can’t Stop: Garmt, (ever wonder if) it is all for you. Yet I exhibit clear signs of mental breakdown.
 
So I retreat, I breathe, I compose this post in my head. I cry, feeling like things cannot get worse, I get warm during crying, that is nice… wait a minute. Ah. I get warm from the contents of my stomach, which is flowing out of me from the PEG-tube which has opened as a divine reminder that things can always get worse. Cue Lou Reed, it’s a Perfect Day. I soak in my own acid and cry for help.
 
I had wondered lately if I am getting too soft on myself. I produce nothing. I create nothing. I do one or two professional tasks a month. I spend most of the time I do have on my damn gmail inbox. I hardly work on the most important piece of my legacy, the letters for Zoe. I know of patients in worse condition than me who run companies (yes, plural) or organise things and accomplish stuff. Why can’t I? Supposedly ALS leaves the mind intact, well, except for the 15% who get dementia, or was it 16%, because I forgot, ha ha. Why don’t I kick myself in the balls to start showing some discipline and get back to work? Treeway, MinE, Accenture, Qurit, they are all waiting for me. Or perhaps they are not. No one is irreplacable.
 
Kicking yourself in the balls does have its uses. I remember being depressed for some time, again, and being sick and tired of always getting depressed, so I kicked myself and bought a notepad and gave myself some homework: no matter how bleak your day has been, every evening, you will write down three positive experiences. You depressed asshole, you. Well allright then, I moped to myself. At first I was bummed to write down: the high point of my day was a sandwich for lunch. Not even a nice sandwich. Just a roll with cheese. That outdid everything my overpaying high-lifestyle job had to offer. A roll with cheese. As the weeks progressed, I noticed that my exercise was working – spending your day looking for high points is better than sulking your way through life. And more importantly, I started to learn what made me feel good.  Apparently, I had wired myself the wrong way, and I needed a stupid simple kick and some homework and some discipline to rewire. Anyway, bridge to the next paragraph, after months, food still made it to the top three nearly every single day. Food beats antidepressants.
 
Back to our villa near Oxford. After I had been stripped naked and showered and cried with and laughed at (without being able to retort, but it is really cold in here!, that is why!), we gathered for dinner. Menko was chef today, and as I have stated before, his cooking outdoes a dinner at any one-star and most two-star restaurants. I watch my friends enjoy, chew, swallow, EAT. I try to be happy for them. I try to enjoy the sight. I try not to choke on my bite of blended pear, and I fail. I try to walk the road which I am convinced exists, the way to experience this disease while being free from suffering, the road where you transform your mud into a lotus flower, but… it isn’t easy. I will get used to this. I will enjoy my friends’ pleasure, I will not feel bitter. But… this particular wound, not eating, is still raw, so it may take a week or two to adapt, maybe even in time before the next piece of my life dies.
 
It dawns on me. Maybe this is what has been keeping me occupied. The constant adaptation, mourning, frantic groping for control, wrestling with words like eindverantwoordelijkeverpleegkundige, etc. Perhaps I am not being lazy. Maybe a kick in my own balls is not the best course of action at this particular point in time. I share this epiphaneous insight with my friends, whose reaction is laughter and an overwhelming “Duh!”. Ok. Nick Cave appears in my thoughts again, with the same cynical-or-is-it piece of advice he gave me the other day, in a conversation I am still writing down. It stems from his aptly ironic and ironically appropriate song, No pussy blues. He dictates: 
That I must above all things love myself.
That I must above all things love myself.
That I must above all things love myself.
Ironic or not, I’ll take your advice. Thanks, Nick.