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Even With ALS

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

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Bring It On

17/09/2016/in English, Updates /by garmt
Once again, Nick Cave saved me. A few weeks ago, I had a horrible weekend, a mini depression concentrated into two days. Feeling lonely and full of self-pity, I cried all Sunday, unable to stop even when Paul arrived to break my loneliness. Holy crap, did I feel miserable.
Why? Because I have ALS, you insensitive clod. Because movement requires machinery. Because the person wiping my butt isn’t me. Because the repetitive monotony of my daily routine would eventually grind the spirit of even the Dalai Lama to pulp. Because not a week goes by without the nagging thought that I should really be dead. Because I feel lonely, sometimes even in the company of friends. Because everyone is enjoying the summer, BBQs in the park or vacationing to beautiful places, except me. Because I would strangle someone for a beer, or a burger. Because without the distraction of eating, talking, moving, smelling, (should I mention masturbation yet again?). Without the energy to get wheeled outside, or do anything other than staring at a screen and willing my unwilling eyes to produce or consume something, all fucking day, every fucking day … where was I? Ah, yes, that in those circumstances, you can’t help but look at your life, and despite all your oh-so-clever mind tricks and all your glorious little “I-am-still-relevant!” projects, that despite all of that, let’s face it … my life is the shittiest shit of a category so shitty that I might as well have become a lawyer.
Paul has a long history of rescuing me from loneliness. Back in 2000, when I was living in New York (technically, New Jersey, but let’s keep that strictly between us, ok?), every Saturday when he got off work, Paul would call me during his walk home, hoping that I would not pick up. See, Paul ran a club, so his walk home started at 6AM on Sunday morning. Ah, New York, despite all of your ambition and zeal, you’ll be forever behind us Europeans. Six hours, in fact. So his call came at midnight, and every time I answered, Paul would know: shit, he is at home or at a bar that’s so dead it sounds like a bedroom. Yup, there I was, at home, playing StarCraft, or worse, studying to get better at my job. Saturday night. I wasn’t with friends, I wasn’t out enjoying the nightlife of the greatest city on earth. I was at home, alone, even though I wanted to be anywhere else. I hate, I detest lonely dull nights. Paul knew this, so he called and rescued me from loneliness, every Saturday night / Sunday morning.
Do you know what friendship is?
Anyway. Back to last weekend’s wallowing in misery. This time not even Paul, Miga or Menko could pull me out. My mental demons had some pretty irrefutable arguments, like: “What, you think you’re going to talk movement back into his body?” They tried, though, and through that, they got me ready for Nick Cave’s kick to my system that would jolt me out of my blues.
See, I wasn’t depressed, I just had an attitude problem. Saturday night, Miga and me watched an episode of  Peaky Blinders. At one point, Bring It On played briefly in the background. It tickled my brain, but I didn’t know why. Late Sunday night, I played it again. It’s from an excellent album, Nocturama. I found the opening song to be an extremely suitable soundtrack to your girlfriend breaking up with you to be with another man. Anyway, Bring It On. It was on the second listen that it hit me.
My very first private interview with a true Zen Master brought me right back to the question I had been asking myself since early adolescence. He said: “Perhaps it is good to ask yourself, ‘what do I really want?'” I was puzzled. Zen was supposed to be about selflessness, letting go of the ego, detaching from desire, etc. Right? Now, this small wrinkly old man was telling me to focus on a super egoistical matter: what _I_ want. Ok then. It kinda was my first koan. I had only been meditating for a few years, so I felt like I shouldn’t bite into it straight away. I would nibble at it from time to time. Later, I would focus a whole sesshin on it, dropping the question down into my belly, twenty half-hour meditations per day. What do I really want. What do I really want. WhatdoIreallywantwhatdoIreallywant. Every now and then, an answer would pop up: a BMW? No? Well, two BMWs then? Still no? No. None of that. Every answer was wrong, until finally, during my sixth sesshin, the right answer presented itself.
I went for my interview with the teacher. Blundering into his sacred room, I uttered, “I’ve finally found out what I really want!” He continued looking at the ground, right in front of his knees. He had been sitting on them, in seiza, for hours. His face was sweaty (seiza hurts, eventually) but serene. “And what, pray tell, is your answer?”
“Everything. I want everything.”
So, Sunday night. Nick Cave. It hit me. I was getting exactly what I wanted. Bring it on, life. Bring it on! I want all that you can lay on me. Not just the good bits – I want it all. Do not hold back, please. Bring it on, and see me fucking thrive through it all. Everything, please. I want ALL of it!
That attitude. That’s what was missing. It bounced me out of my blues, is still bouncing me out and in, ‘coz I’m not out of it yet. But if I cradle its’ spark I might, over time, light a torch with it and make my way out of this ugly place. I’m getting there, I think, or at least, I see some stars pointing the way: watching Zoe eat, I know that at least my appetite will live on. Or, playing Keezbord with Steph and friends, Iris and me, we show the world what happens if we team up. We win in such a devastatingly magnificent way that it hurt. Literally – the next day my few remaining muscles ache from laughing.
You know what one of the hardest things is, that life can bring? Praise. At least for me, it was. But more on that later. Foreshadowing, it’s a foreshadow, you got your foreskin and your foreshadow. That last line is a quote from the Peppers’ lead singer, so it must be true. Oh, c’mon, just smile to politely pretend you thought that was funny. Back to business.
The crux of wanting it ALL is in the “And not just the good bits”-part. When I said I wanted everything, I thought it meant: I want to be a consultant and a carpenter and a cook and I want to be more compassionate and also really rich and take responsibility oh and I want to be able to cook better than Menko and be great at … etc. Like a pig, in a cage, on antibiotics, I think now, looking back on what I thought I wanted back then.
Not just the good bits. Just like your emotions. You can’t just be happy, sadness wants to be felt as well. If you suppress one kind of emotion, the others go: “Fuck you, Mr. Sadness is our friend, if you don’t want him around, we won’t come either.” Life is the same way. You try to strive for pleasure and avoid pain, as you should, but if pain shows up, you can’t just ignore it. If you want Life to flow through you, you’d better be open to all it has to bring, not just the good bits. Don’t prefer. Fuck, this is one of the first lessons of Zen, and I don’t think I ever got it, until now, writing this. Thank you, reader, for giving me a reason to sit down and do this.
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 garmt2016-09-17 16:14:512016-09-13 01:17:08Bring It On
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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.

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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.

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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.

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