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Even With ALS

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

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Sad but true

06/06/2014/in English, Updates /by garmt

We are driving home and it has been a fine day. A beautiful day, Lou Reed would say. A Bittersweet Symphony, the Verve would say. Kiss me, Tom Waits would say.

 

We are debating Tesla vs. BMW. Iris makes a lot of good points about its impracticality and I realize I'll probably have to choose against the fancy and hip Tesla. I get so sad; no cool new toy. I meta-realize how odd it is: I can feel such sadness at a Tesla being "taken away from me even though I never had it", whereas the notion that 50 years of my life were taken away from me even though I never had them hasn't really made me that sad.

 

I think back to earlier tonight. A gathering of various Accenture people active against ALS. First time in 6 months that we have all the different strands together. Except for Lucas and me, there is nobody that has the full picture. We spend two hours going over everything we do. Proto-types exist that were mere ideas 6 months ago, contributors from Switzerland and the USA on the call, the Japanese working group, the stakeholders that we have engaged at the highest level of our company, the results we have achieved with TRICALS and Qurit, the big-data design we are making for MinE, etc., etc. Every now and then, somebody can't help but burst into laughter or otherwise lose his professional composure, when we all see how ridiculously serious the contribution is that we have made in kicking ALS in the balls. I have a brief moment of insight that my efforts to activate have actually not been pointless. A warm glow surrounds me.

 

But I'm still dying.

 

That's what I realize, a little bit more, driving home with Iris and debating Tesla vs. BMW. As if I had just been meditating for hours, I see how empty my comfort strategies are and how impossible it is to understand the notion of death. I just get, and then only ever so rarely, that it is something so bad you can't even really realize it. I hold most of my tears until we are parked and after 10 minutes I can talk to Iris. As usual, she changes my reality with just a few lines. Death does take everything away from you in the end, but that's too big to grasp. But you can feel the little bites it takes, and those hurt. Like that stupid poem of Toon Hermans. Sad but true.

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 garmt2014-06-06 21:31:322014-06-06 21:31:32Sad but true
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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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