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Even With ALS

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

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Made from paper. Tangible, flammable, wow!

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Latest post

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

14/03/2015/5 Comments/in English, Updates /by garmt

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.
http://evenwithals.com/wp-content/uploads/2016/08/even-with-als-logo-300x117.png 0 0 garmt http://evenwithals.com/wp-content/uploads/2016/08/even-with-als-logo-300x117.png garmt2015-03-14 15:14:332015-03-14 15:14:33Drill a Hole in That Substrate and Tell Me What You See
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Full story

Click to buy!

So here’s the book:

EVEN WITH ALS

(yes it’s all caps!)

Garmt van Soests first book. Part two will follow, later.

EVEN WITH ALS is the overhauled, revised, spellchecked collection of his blogposts. Furnished with more than a hundred footnotes, a foreword, epilogue and an extra appendix. Garmt curses, raves, fights, wins, sighs, cries, breaks, listens, sees, feels and shares. With powerful language and words that strike home, the book expertly punches you in the gut.

So get a move on. With a few simple clicks of a button, a piece of cake for those without ALS, the brand-new book will be making eyes at you from your mailbox in no time.

Convinced? Click here to buy it
Not a fan of paper? Read it all online, here!
I have the book, show me the extra content already.

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!

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