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Even With ALS

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

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Three O’Clock Blues

16/07/2015/2 Comments/in English, Updates /by garmt

Every now and then, I wonder, I wa-wa-wa-wa-wonder, have I still got it? Do I still have it?

Have what, you’ll wonder.
 
And I’ll say, “
I was lying in bed last night, thinking back to that concert we went to. Janine Jansen was playing the crap out of that Stradivarius, it was really mesmerizingly beautiful. I started to zone in, and my brain got hit by inspiration particles. Now, one of these is good, but the way Janine was living out that piece of Bartok, I got hit by all of them. I remember one strand of thought, like a… it started with a memory of one teacher who was so furious at me that he shook, for something i had done over the weekend, which is, call him up at home and ask for an extension to some assignment, and he did not say it then, but he did say it now, after class, shaking with indignified rage, calling me “hondsbrutaal!!!”, or cheeky, malapert, the wrong way to be audacious, and i wish i had not just looked up the 24 translations because audacious kinda kills my entire train of thought for reasons that will one day become clear, so let us stick with rude, yes, i was being rude, and now, twentyodd years later, listening to and watching violins saw through music, this thought gets called up by an inspiration particle, and i ask myself, what is actually so bad about being rude? In a quick succession of epiphanies I come to a big personal insight that I want to hang on to, because hey, it might be blogworthy, that is how nice this thought is. Lacking a notebook, or muscles to write, besides, I am at a concert, please behave, I look for a mental note to remember this insight by so I can pull it back when I have more time, because right now, not only do we have music to immensely enjoy, we also have a million other inspiration particles to attend to, everybody’s talking at the same time, so I grasp for the core of my insight, being “Beleefd Brutaal”, because at the concert I was thinking in Dutch, but now, now being last night in bed thinking back about all this – in case you forgot, look back to the beginning of this paragraph, go on, I will wait here. Ok. Did you go and look? So, beleefd brutaal, that is not hard, because it is two b’s, and I have lots of memories about BB King (for instance, how my guitar teacher taught me to play along with the solo of track five of Riding with the King; apparently that track was BB Kings breakthrough hit 48 years before it got on the album that I got it from, which was released 15 years ago…), so I latch it on there and let go. 
 
I came home from that concert and told Roland my five mnemonics that I took away. He does not fully understand, which is good because it would have been creepy if he had, but now that i wrote it down to him in a draft email I can let go of them and my head is free again. 
 
Three weeks later it is last night, meaning, now, and because I can’t get no sleep I roam my brain for something useful yet enjoyable to do, and stumble across BB King. Right, that feels like a juicy thought. Get to work, brain! Work, work, remember? I have to spin a story around that insight, and maybe a good place to start a story is by remembering my time in New York, where I did nothing but work, study and jerk off, really, I don’t even think eating or sleeping made it into my top five of activities, because I was dead set on proving myself, so the minute I got to a new assignment, I looked for the brightest alfanerd (… somewhat of an oxymoron there) and vowed to know more than he did ASAP, hence all the studying, and no wonder customers loved me, because I did nothing but work and study (as far as they were concerned, because jerking off was none of their business), and then I got a 36% raise after three months on the job (which was a disappointment of sorts, because one client offered me a 100% raise if I came to work for them, which I didn’t, if only to have said no to a buttload of money, and besides, even what I was making before the raise was considered a shitload of money (note that two units shitload equal one unit buttload) by me and a pittance by other, real, New Yorkers) but hey, I was having a decent time, just no friends, except maybe Faraz and Sonny, and Myra and Matthew and Lorraine….. maybe I was less of a pathetic loser than I remember at first. So Sonny walked by the BB King grillhouse and saw that he was playing that night. What!? No! Yes. So we got to see the living (then, still) legend there. Cool, huh? Which tells you nothing about the bb insight l gained during my Bela Bartok concert. Read that sentence again. No, just the short one. Do you see the irony yet? Looking for bb at a Bela Bartok concert? Anyhow.
 
I lie there and see a myriad of thought fragments, insights, memories, songs, movies and dreams whirl together, slowly, somewhat majestically, into a thought castle that maybe a story could navigate. I walk through it several times, repeating the main themes of the story like I am trying to drop breadcrumbs in my skull, because if I do not, the castle will be lost in the morning. I have a strong brain but a weak memory.
 
I used to build thought castles in cooperation, and they were rarely about songs or insights or other things that made me tick, but building them with others, man, that sure did float my boat. Lots of little thought castles with lots of different people, or one big thought castle with a team. Of course, we cheated, because we helped ourselves by the three indismissable tools of the Consultant, which are; a whiteboard, powerpoint (or its equivalent, paper and a junior consultant) and excel (or its equivalent, a junior consultant). You have those three, you have all you need to bring thought castles into the world. Oh, and you need a voice, and operational motor neurons (no equivalent available). When we brought the thought castles into reality we sold them for insane amounts of money, or even better, we got paid up front to build just the thought castle for them, or in the very best case, with them. We called these thought castles “business case” or “strategic roadmap” and there was satisfaction in creating them, because they were valuable, or why else would a customer pay so much for them? Hey, everything good starts as a thought castle. The cure for ALS started as a bunch of thought castles. Zoe started as our thought castle in Berlin, of all places. 
 
Nowadays I build my thought castles alone, like Dr. Manhattan on Mars. I am getting better at it, but what is the use if I can’t share them? At most, I can show a fleeting glimpse. Bono comes onto the mental stage now, sings a line from Zoe’s song: “I want to trip inside your head, spend the day there… To hear the things you haven’t said…”. The first time I hear him, I think: Yeah, right, you inside my head, see my thoughts take shape? Buddy, you would get crushed like a western pedestrian in Bangalore rush hour traffic. Only when I repeat the story for the third time, so I can write some of it down tomorrow, which is now, does it strike me. That part of the song was about a completely paralysed classmate of Bono, who had not been able to communicate at all for the first ten years of his life, and then became a quite famous writer. When I realise this, I understand what this post is supposed to be about, which often helps, although not in this case. See, I wanted to give you a trip inside my head, but I did not want you to spend the day there. Man, this post is way, way, way too long and about too many things. But hey, wasn’t it Zarathrusta who said, “You must have chaos within you, to give birth to a dancing star”?
“, yes, that is what I would say, in the way that I used to, say, say things.
 
Did you get any of that? All of that? No? Good. That means I still have it. I still have it, and I am still here, even if this particular post is not particularly readable. I still have it – it just takes one full day to share even a small and unrefined bit with you. I am still here, and despite the fact that I am always surrounded, I get lonelier and lonelier. I have it. I still have it. And I am stuck with it. To quote Zarathrusta again: “Du grosses Gestirn! Was wäre dein Glück, wenn du nicht Die hättest, welchen du leuchtest?“, although… that is a bit rich, to see myself in Nietzsche quotes. But, I’ll leave it in, because as all Dutch readers know, I am a Rich Kid. Of Instagram.
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 garmt2015-07-16 17:50:342015-07-16 17:50:34Three O'Clock Blues
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Full story

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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
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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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