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ALS Dan Toch

Garmt was experiencing ALS – so you don’t have to!

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Latest post

She likes to move

07/02/2014/in English, Updates /door garmt

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).


 

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2014-02-07 19:17:212014-02-07 19:17:21She likes to move

DK7

06/02/2014/2 Reacties/in English, Updates /door garmt

It feels like I met my killer this week.

 

Not ALS – we have been introduced earlier. But we both know that he's not a killer – he doesn't have the heart for it. That guy just weakens. And then he invites buddies like lung infection or something. And this morning I woke up with the flu, unable to breathe, barely able to suck air through a throat clenched shut by some muscle spasm, sweating all over from a high fever. So that will be my killer. The flu. I had it really seriously last year around the same time; ten days of extreme fever; I wonder if that was what triggered the onset. Anyway. The bottom line is: if my lungs are weak and I get what I have now it would probably be the end of me. It's kind of ironic; we're going to cure ALS but we don't even have a medicine for the flu?

 

So it's a week with a lot of crying. I've been playing tough guy long enough and I finally figured out I don't have to do that at home too. Thank god for Iris. My fellow patients prefer to focus on the positive so much that it seems like there's no room for grief. Call me sentimental, but I kind of feel like it's right to mourn the passing of my right biceps. I was at the gym the other week and try as the physical therapist might, even she couldn't suppress a "really?" when the biggest weight I could pull with my right arm turned out to be 5 kilograms. It's inspirational to keep upbeat and focus on the positive but for me there also needs to be room to sit down and realise that you are going to miss doing a push-up, or slapping Iris' butt, or carry groceries, like you'd miss a good friend when he's gone. I quite liked the use of that arm. I have one left, Iris' butt isn't safe from me slapping it yet, and there's no telling how it will progress, but it took that arm only 8 months to get to this point, so…

 

The ALS Honeymoon is getting to an end. The collective effort, love, help, support of everyone close launched me right into orbit – never have to work again, all the holiday you want, your DREAM JOB COME TRUE, we're becoming parents! Retail therapy on top – everything is new, laptop, phone, tablet, clothes, soon a house, "best restaurant in the world" yeah yeah yeah. And everyone is so nice to me! So nice! I wonder why? And then you read a blog from the husband of a colleague, who reached out to thank me for the work we're doing against ALS, because her husband died from it as well (you think this disease is rare? Incidence is 2 in 100,000, but that is _per year_, so turns out you actually have a 1 in 300 lifetime chance to die of ALS), and those blogs from patients always start at the end and then you read backwards, and yeah, going to the toilet using a crane isn't the most fun way to spend your day. That's why everybody's still being so nice, I guess.

 

Once you digest a diagnosis like this it's quite liberating. I have always put way too much stock in other people's opinion because I deemed them to be better than me at something or the other. Well, ALS got rid of that. No more static. No one can judge me now. No one can walk a mile in my shoes (well, except maybe B and RJ, which makes me quite sensitive to their opinion). It's amazing how much better your decisions get when you just listen to reason and emotion and not to some psychological complex. I highly recommend it. Or maybe ALS just gave a tiny push to years and years of hard-core zen training? 🙂

 

I wrote a happier update earlier this week that I'll send out tomorrow.


 

http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png 0 0 garmt http://alsdantoch.com/wp-content/uploads/2016/02/ALS-dan-toch-logo2-300x138.png garmt2014-02-06 21:22:422014-02-06 21:22:42DK7
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ALS DAN TOCH - Laatste Boek - Garmt van Soest

ALS DAN TOCH

(LAATSTE BOEK)

Dit tweede – en laatste – boek schreef ik grotendeels afhankelijk van beademing en knipperend naar het toetsenbord van mijn computerscherm. Mijn lijf lam, maar mijn geest glashelder. Vol ophopende gedachten, want schrijven ging steeds moeizamer. Het gaat over uitrazen en neerstorten. Over leren genieten van het genot van anderen, naakt en weerloos betast en bepoteld worden, tot last zijn en me daar schuldig over voelen. Over de opbeurende lyrics van Nick Cave en Skunk Anansie. Over voortleven – in anderen.

Doodgaan is heel eenvoudig, een moment, iedereen kan het. Sterven is andere koek. Sterven is afronden, teruggeven voordat het uit je handen wordt gerukt, vrede bereiken. Maar het is ook een startpunt: je kunt pas echt leven als je goed kunt sterven. Dus STERF, GVD!

Overtuigd? Klik hier om ’m te kopen

ALS DAN TOCH

(EERSTE BOEK)

Het eerste boek van Garmt van Soest.

ALS DAN TOCH is de herziene, gereviseerde, van taalfouten ontdane en van meer dan honderd voetnoten, een voor- en nawoord, en een extra appendix voorziene bundeling van zijn blogposts.  Garmt vloekt, tiert, vecht, wint, zucht, huilt, breekt, hoort, ziet, voelt en deelt. In krachtige taal en rake bewoordingen vliegt het boek je haarscherp en loepzuiver naar de strot.

Dus hop. Met een paar luttele drukken op de knop, een makkie voor wie geen ALS heeft, ligt dat spiksplinternieuwe boek binnen twee dagen naar je te lonken op de deurmat.

Overtuigd? Klik hier om ’m te kopen

Klik en koop!

Geen fan van papier? Lees alles online, hier!
Ik heb het boek al en wil gewoon de extra content zien.

Voor wie is het boek?

Het boek is uiteraard voor wie gewoonweg geen genoeg krijgt van zijn blog, maar ook voor hen die onder een steen geleefd hebben en pas net op de hoogte zijn van het feit dat er überhaupt zoiets bestaat als de blog van Garmt. Het is ook voor een ieder die inmiddels een muisarm heeft ontwikkeld van het vele doorklikken op de website en natuurlijk voor de vrienden van de oude stempel, die het ouderwets geil vinden om een potje aan ècht papier te snuffelen tijdens het lezen.

ALS DAN TOCH is voor iedereen die Garmt en de stichting ALS een warm hart toedraagt. Want uiteraard gaat de uitgeversopbrengst van het boek naar de stichting ALS. Vooruit, en de royalties gaan naar dochter Zoë. Dus je doet met het kopen van het boek niet alleen jezelf of je moeder een groot plezier, maar maakt tegelijkertijd de wereld een klein beetje mooier.

Win-win.

Zijn beschrijvingen zijn scherp. Geestig. En eerlijk.

Volkskrant

“...wrange humor en stoere vechtlust…”

Algemeen Dagblad

"Een boek waar alles inzit."

Jeroen Pauw

dadablblblblrrrr, die!!!!!??!

Zoe L. van Soest

Join the fight

Hello, dear reader. ALS is currently incurable, but I’ll be fucked if I’m taking this lying down. I’m also trying to be realistic about this, but still, a bit of a battle does a person good every now and then. The fight I’m fighting is summed up pretty neatly here in this video (februari 2014).

There are a few ways you can help out with a small donation:

232Km in 2016

Sponsor James Faust as he participates in 4 races in 4 countries to raise money toward research.

While I swim, bike, and run, you can show your support by donating.

Project Mine

The biggest genome research project known to date. My biggest bet that we’ll find the cause. Once that is known, we at least know what we’re shooting for.

Stichting ALS

Of course, the big constant factor is the Dutch Stichting ALS; they welcome your annual donation; small or big.

Your idea here?

Are you swimming, cooking, cycling or walking against als? do you know someone who is a millionaire and wants to make money? Mail to info@qurit.org or press the button.

Sponsor James Faust
Visit Project Mine
Visit Stichting ALS
Contact Me

My friend who’s really on top of the fight is Bernardus Muller and you can find him on https://twitter.com/BernardusMuller. His twitter feed is the best place to hear what’s going on with ALS. If anything can be done or if we or someone else have managed to achieve something, you’ll hear about it from him first.

Follow the latest updates on ALS

Who?

Garmt van Soest

Garmt van Soest is a versatile manager with a strong background in business strategy and technology. He has advised Fortune 500 companies in the US and Europe since 2000. Garmt joined Accenture in 2010 as a Senior Manager in Strategy where he has been leading engagements in different industries, solving complex problems, advising on strategic direction setting and leading organizational transformation programs. Since his diagnosis with ALS his full-time job is to fight this disease with everything he and Accenture can muster.

Do you have ALS yourself? Click here!

Pers

Volkskrant

Ik ben niet gek of dronken, ik heb ALS

Trouw

Vechten tegen verbittering

Algemeen Dagblad

Garmt slaat keihard terug naar dodelijke ziekte ALS

PAUW

Garmt bij Jeroen Pauw

GIEL!

Garmt bij Giel Beelen

RabRadio

Garmt bij Paul Rabbering

Tot slot, een hoekje met zenboeddhistische dingen.

  • Een interview met ons clubblaadje, voorjaar 2014, waarin Maurice best goed mijn toenmalige gedachtes over Zen wist te beschrijven. Interview.
  • Een stukje voor hetzelfde clubblaadje, waarin ik wat losse gedachtes geef over Het Woord: Het Woord.
  • De beschrijving van mijn motivatie om zenbuddhist te worden: Jukai.
  • Een hapsnap verzameling van tekstjes en gedichten, alhier.
  • Ik gaf ooit een megalomaan praatje aan het einde van een rohatsu, in IZC De Noorderpoort. Bekijk het hier: Filmpje
  • Een stukje over het liefhebben van je lot: Amor Fati.

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