Even WIth ALS
  • Home
  • Blog
    • Latest post
    • All posts
  • Book
  • Join the fight
  • Whowhatwhy
  • Search
  • Menu

Even With ALS

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

Blog

Garmts latest stories

Book

Made from paper. Tangible, flammable, wow!

Join the fight

Kick ALS in the balls, join!

Whowhatwhy

Who am I and all things miscellaneous

Do you have ALS yourself? Click here!

Latest post

Mi Negra Ave Maria

25/01/2014/in English, Updates /by garmt

Hey, you know what? That tower of Pisa is really almost tipping over. Almost. Like it's beckoning you. Asking you. Pleading you to get closer. Seducing you to lean against it. To give it a push. To topple it over. To give it the rest it so desparately craves. It wants to sleep, that tower, you can tell if you pay attention. My manager and I, we heard its silent cry, and sat scheming in a bar thursday night at beer o'clock, cross-eyed, wildly gesturing widely, estimating the required size of the truck that could generate enough momentum for that critical push, almost like we were boasting about an imaginary fishing trip (mine was THIS BIG!!), trying to google on our nonworking phones where to steal said truck, the only real risk to our plan coming out of our quickly executed Accenture-approved risk attenuation target scheme/assessment structure solution (r.a.t.s./a.s.s.) the possibility of some random Italian cop giving us an alcohol test while we're wrapping the tug of our truck around the top of the tower. I mean, I don't know the Italian word for ALS, so how would I excuse myself out of this one? Excuse-ah mi, sir, but I just want to achieve world fame? And… Did you also know that despite the crooked-ness of that tower the flagpole on the top is as vertical as could be? Wow, man, I mean, wow.

 

So, huge fucking headache the next morning and still on the plane back to Amsterdam. Set a new record for oversleeping – my manager had to call me up _three times_ to ask where the hell I am and when I finally did get down: no more breakfast. Boo fucking hoo. Did I mention this post is not for children?

 

Tripped earlier this week and landed on my right fist which nicely drove its way into my ribcage to bruise one of my ribs. Don't laugh or I'll laugh with you and – OW. That hurts. Just like sneezing. Or choking.

 

I managed to get through an excellent dinner (preceding our Pisa-tower-scheming frenzy) with only three occasions of beer or wine fountaining from my lips as result of a hiccup. Trust me, in this restaurant, it was the only way to get the attention of the waiter. And he has to be polite or I'll actively target him next time. At least I've not once dropped my cutlery this time.

 

My manager isn't bothered by my breaches of etiquette – then why am I? It's not like I'm doing this on purpose. It's good for mindfullness training, actually, I've never been so constantly and continously aware of every movement any muscle in my arms or face make as when I am eating in a restaurant with a half-limp right hand (God I want steak! Fat chance, suppose you could even cut it you can't chew it anyways. etc) and a tongue that doesn't speak for a while after each course. Oh, how I will have tears of laughter down my face, when I read this in a few years, and imagine I let _THIS_ upset me. Later, back in Utrecht, in one of the most excellent evenings I've had for a long time I work out with Juel why I was apologizing for spraying beer and dropping forks. Because the very best way to show that it's not bothering anyone is to ignore it when it happens, as my manager does expertly; then; I apologise because it gives me a moment to talk about it and learn how to deal with it. Because other people are mostly dealing with it just fine – I still have to get used to it. And that never gets old.

 

Last week I went to see the company doctor. "Hello doctor!", as I enter the room. "Hello Garmt. Do I see it correctly that you are favoring the use of your left hand these days?" – she spots and sees through me within a second. So I answer: "Yes, that is correct. What shall we talk about today?".

 

The body is attracting a lot of attention these days. Stumbling, tremors, that stupid right hand, really, I gotta speak to the manager, is there warranty on this thing?, the conscious effort that talking takes nowadays. So I relish the evening with Juel, time with a special friend, time to escape for a bit, we reboot our friendship and she gives me an insanely special wedding gift (just a tad overdue), I make it way too late, I am aware that it's already 3 AM and I have still not prepared for tomorrow. In 5 hours Gerard will pick me up and we'll drive to my old University where 40-or-so Business Leaders that did the same MBA as I did will gather because I shouted "Hey, guys, I'm dying, come help". Big names are there, the dean himself got right off the plane from Toronto and is hosting the day, the professor is there, all ready to solve the problem of ALS. As I lay staring at my alarm clock, counting the hours left to Gerard's pick-up, I wonder: why do I give myself this stress? Why didn't I just prepare properly with enough time and attention? I know what enough should be and it totally doesn't feel like I'm there yet. And then I realise: I give myself this stress because I'm an adrenalin junkie. Yeah, I know all of you knew that, but some lessons are hard for me to learn.

 

Five hours later I get in the car with Gerard, another 10 hours later I am delivered back home, tired like fuck. Enough Business Leaders thanked me to convince me that the day was worth their while. Maybe I didn't do it so well as I wanted to but I think I can allow myself to be happy. Five or so attendees manage to escape without an action point and the rest is now enlisted in the fight. Roughly 6000 people on Twitter saw #mbals. Not a bad score for the day, in terms of result for "the" fight. Even better is the result for "my" fight. I don't know if I can call ALL of these people my friends, but they were there, and I could see care and worry and, I think, love, in the eyes of every single person attending today. THAT fuels my fight. Nicolas, holy crap, you came here from Colombia for this day. Marinus, you have a day job and kids, where do you find time for that marketing plan? I shouldn't name names because I always forget the most important ones… And once again the words "thank you" seem insufficient. Thank you.

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 garmt2014-01-25 19:28:472014-01-25 19:28:47Mi Negra Ave Maria
Page 48 of 66«‹4647484950›»

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!

This website was made possible in collaboration with:

Scorpius Webdevelopment
Unleash The Monkey webdesign
Linelle Deunk photography
Hester Doove photographer
Nowsales hosting services
© Copyright - AlsDanToch | Credits
Scroll to top