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Even With ALS

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

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How deep is your love

06/09/2014/in English, Updates /by garmt

So John Frusciante used to play and sing that song as part of a Peppers show. Which goes to shw that even guitar geniuses can surffer from poor judgment. This is the first entry fully written and posted using eyes only.

 

Each time you go to Lowlands Festival you go for something familiar and something unexpected. I first went there, I think, in ’98?, as site crew, working backstage on odd jobs like driving trunkfulls of gaffa around or handing out rain ponchos to crew. I remember the disillusion when I went as a paid visitor for the first time; so much walking from parking to camping to mainstage to drinks, etc…

 

I got diagnosed with ALS a little over a year ago, just two weeks before the festival. Back then, nothing much was wrong except that I spoke a bit slower and I couldn’t throw my beer as far. Right now, 13 months later, I am waiting for the wheelchair to be delivered and I’m typing this text with my eyes. Temper fugit. So when my best friend Paul showed me two backstage passes for this year, I couldn’t wait to go there and carpe fucking diem. He had even called in a rare favor from his old friends at the on-site power supplier, getting us a gator.

 

So we went there and we had a blast. And the biggest unexpected thing I took away this year? Love. Everyone was so kind, so caring… I need help with a lot of things and that is usually not something busy crew is waiting for. My biggest fear is ending up as a bother to people, as an inconvenience, and not once did I feel like that, even though I constantly took time and attention from people who had a job to do. We showed up at crew catering ‘de kookvogels’, whom I worked with a few times, at the busiest time of the day, and all the chefs took time out to sit down and have a beer with us. These guys have seen ALS up close and that makes their warmth to me all the more impressive (would you want to be reminded?). I could have stayed there hugging these guys all weekend (which is slightly odd as close physical intimacy with sweaty unshaven men is not a regular hobby of mine, but I digress).

 

Later, stumbling onto the loading dock of the main stage, I was surprised again; two roadies put me on a dolly, pushed me right past the final frontier of Lowlands’ inner sanctum, yelling ‘he’s with the band!’ to get the security guard to jump out of their way. I had arrived on the back of the mainstage, right as one of the headliners were starting their set. The monitor-mixer gave me a glance and offered me the best seat in the house.

 

So much love and respect, from everyone working there, it was also reassuringly familiar that the VIP’s in the guest area ignored me alltogether; these are people who are too important to be nice, thankyouverymuch. In that same guest area we met one of the only real vip’s there; Camiel de Kruijf, without whom half the festival wouldn’t even be there. He’s a close friend of my best friend and made all of this possible for us. You don’t expect so many nice and caring people to work in the world of rock&roll, but there he is.

 

Since learning about my ALS I have tried hard to fight it; helping research (www.projectmine.com), becoming a partner in a company developing ALS drugs (www.treeway.nl), setting up an ALS investment fund (www.qurit.org)… The ice bucket challenge brings hope because it raises awareness and funds, which this fight needs. The love of my friends and strangers brings the energy to keep me alive and fighting. Thank you, Paul, and thank you, Camiel.

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 garmt2014-09-06 09:57:152014-09-06 09:57:15How deep is your love
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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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