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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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Do you have ALS yourself? Click here!

Latest post

Shabazz Palaces.

29/11/2015/7 Comments/in English, Updates /by garmt

Some misguided fool said just the other day that I know a lot about music. To prove how immensely mistaken she was, I went to the “Le Guess Who?” festival. More than a hundred bands playing, and I didn’t know a single one. Not one band. Zero. I kind of should’ve known. Recently, a friend tipped me to Loon, a short album from Olafur Arnalds and Nils Frahm. If you are like me, you would go “WTF, and I thought ‘Garmt’ was a weird name, who are these guys?!”, so I was super excited about what I thought was a hidden gem. Chalk it up to coincidence that one of my visitors had seen good old Olafur in concert, twice. When another friend said, “Of course you know Nils. Who doesn’t?” I started to wonder, and looked up Nils and Olafur on Spotify. Turns out both guys each have more listeners than Jamiroquai. I am officially out of touch. Especially so because my younger readers will now wonder who this Jamiroquaiguy is. Well, it is a band, whose lead singer crashes expensive cars, sometimes in his own moat.

So, Le Guess Who?. We strolled around the only wheelchairfriendly concert venue in Utrecht, a massive place with at least seven simultaneous stages. Amongst our group of six we only knew which particular band to avoid; Sunn O))). We wandered, from Destroyer to Magma, past Red Light Radio into Cloud Nine. Ha, gotcha, that wasn’t a band name but the name of the room/hall. Crushing careless feet and breaking teenagers shins we rolled me straight to the stage. The rest was history. A performance more significant than this hasn’t been given since Bob went electric. Well, ok, hyperbole etc, but this was the most original thing I had heard since, say, Mars Volta. Avant garde hip hop. Beats so glitchy, vocals so diverse, it was completely unpredictable and… yes, it was delightful. I grooved, I was befuddled and baffled, I couldn’t make out any of the lyrics and it didn’t matter. Even their outfits were baffling. I absolutely loved every second those two guys on stage were at it. I would later read that some newspaper called their album the hip hop equivalent to Trout Replica, and as we all know, Captain Beefheart was Tom Waits’ biggest influence when he redefined his career with that album, was it Heartattack and Vine (“Don’t you know there is no devil, only God when he’s drunk!”) or Swordfishtrombones? No, I still do not know a lot about music, I just know where Google is.
Anyway. Show over, we made our way to the elevator, and ran into none other than the artists themselves. Now, most people would get a little uncomfortable when they offer a handshake and get only a drooling grin in response. Shabazz Palaces, though, was not most people. MC Ishmael Butler asked if I can hear, said “It’s cool”, positioned himself in front of me, and looked straight into me. For a few immeasurably long seconds, we were in contact. We were two human beings. For a nanosecond, I thought about laughing, but that would have broken the contact. Then the moment was over. He walked on, touched my arm, let go. Holy crap. You see, 99.5% of all my eye contact is utilitarian. It is “I want” or “I need”. And sometimes, on nights like this, when my friends take me out, I can’t escape the image that they are lugging my memory along instead of me. Like bringing the urn of your deceased mom on holiday with you. So thank you, Shabazz Palaces, for rocking insanely hard, and for remembering me that I am a human being. I still feel that look.
PS. Yesterday I nearly died (again!), because of some phlegm. Yes, Dutch readers, you learned two exotic words today: slotgracht and slijm (English has more words for spit than we do). Luckily, Samira saved me. It is certainly my intention to say a proper goodbye, and not be hasty about it, but, you know, accidents and incidents happen, and if they do… don’t be mad. Also, do not be disappointed if I live ten more years and win the Nobel prize for Peace, Literature and Science, ok?
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 garmt2015-11-29 21:56:022015-11-29 21:56:02Shabazz Palaces.
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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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