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

A little less conversation…

20/01/2014/in English, Updates /by garmt

… a little more action, please. Mijn oom merkte op: joh, je schrijft steeds minder. Het dringt nu later op de avond pas tot me door dat dat is omdat tikken ongemakkelijk is. De bewegingen zitten niet meer in mijn ringvinger dus moet ik tikken met bewegingen van mijn arm. Dat is minder nauwkeurig en een stuk langzamer. Ik haat langzaam.

 

I thought I'd like to share with you a few conversational moments of the past weeks. Switching to English, I don't want to be in that position of Tom Waits, who has to apologize when he comes up to the stage, because it's been so long since he was here. Asshole, really, WHY did you have to give that show in Amsterdam in the EXACT SAME WEEK that my sister was getting married in New Zealand? So envious of Henrik, who got to go, was I, that when he first texted me "we didn't get the tickets" I could hardly not jump around and dance, until I got the text two minutes later that he DID get the tickets. OK. It's time to be honest. I _do_ have a bucket list. But it always contains just one item. So the next best thing in life after checking off "becoming a dad" is: seeing Tom Waits live. (for those of you appalled at the notion that I'm really THAT superficial that I don't say "a second child" or something, a) pretend that I'm being sarcastic ii) it's tom. waits. we're talking about here 3) have you met me?)

 

I'm not getting anywhere with these conversations. I'll do the sad ones up front and work my way towards merrier stuff.

 

Overheard in the hospital. Patient across from me. Neurologist visits and pulls the "privacy screen" around the bed. Privacy from the deaf because the rest of us hear everything. She wants him to consider again about the feeding tube. He says again: I don't want it. I'll never want it. My sister died of the same thing. I never want to talk about it again. The doctor has to make sure that he understands the decision that is taken: if you don't say yes now, later on there might not be an opportunity anymore. He understands. Now please go away.

 

The story of his sister is true. She had ALS but died of complications of the surgery for the feeding tube. This guy isn't dumb nor is he fatalistic. What's he thinking? What are you thinking? Walk a mile in HIS shoes if you will. Or in the shoes of that doctor.

 

OK, that was a nice warmer-upper, wasn't it? Let's skip to the opposite end of the spectrum before I depress you.

 

Setting: a 200 year old Austrian chalet somewhere in France. Slightly hung over from the wine from the night before. It's a cozy and nice time that we're having and I think if you add up the day rate of each of the 8 individuals in this room we are supposedly worth a small Carribean island in fees. Good thing we are drinking _expensive_ wine, then. I enter back into the room. Ronald and me look at each other and I decide to give the feedback.

"Well – there's good news and there's bad news. The good news is that our plan holds true. The guy we just spoke on the phone, my friend-connection from the RSM, he works for a company that does just exactly what we are trying to do, only with a bigger focus – all of life sciences instead of one disease. And they've already got 800mln, we have zero today. He thinks our plan so far is good. Good enough, even, to offer to put it under his umbrella. His brand and his infrastructure. That saves us a good year in having to wrestle through the forest of regulations and trying to hire people who are as rare as a sparkling unicorn. So that's the good news. The bad news is that they think the market is a bit tough. He and his 14 colleagues just spent two years raising new funds. They've been doing this for 23 years and we for 0. And they raised 85mln in 2 years. And I think: And our target is more than that, and we have to do it quicker, because I'm going to have a baby and we have to actually be done before that. What the fuck are we thinking?". RJ doesn't speak much. He prefers a little less conversation, a little more action please. But upon hearing that the guy who's been doing for a living for 2/3rds of his life in the field that we are newly entering, upon hearing that that guy thinks it's pretty much impossible, he lits up. RJ becomes alive with a glint for the first time in hours. "Ah! THAT is usually where I wake up! When someone says it's impossible I get warm!" – and I realise this man and me have even more in common than I thought. That was supposed to be my line! Imagine the voiceover: They said it couldn't be done….. I can't hold my laughter in and want to high-five him.

 

Allright. Now one a bit in the middle.

 

Setting: A Blue BMW. I didn't count how fast we go because uncle Garmt never speeds anymore since that man with the beard asked about the grass in New Zealand. He tries to make noise with the engine but I can tell he is cheating. It's OK. I point out: Look! A big star! The only star in the whole sky tonight! Look! Uncle Garmt looks and pulls over the car. He points it out. Look! Other stars there! That is a big one! Look. Wow! Those are big stars. But we agree- that first one is the biggest. That has to be the star of Jesus! Uncle Garmt behaves like he wants to ask something but is not sure how to do so because he thinks I am a child. I put him at ease and explain him patiently: If you die God makes you a star and if you were very good you get a bigger one. And Jesus was very good all the way 'till he was killed by that evil king. So god made him the brightest star probably.

 

Silence. Uncle Garmt is pensive for a second. A little less conversation, a little more action please. Uncle Garmt musters up the courage and asks: Will I get a star? Doh. I say "FOR SURE that you get a star". Really? he says, and before he has to degrade himself by asking I say "A reasonably big (or was it beautiful? what's better – a big star of a beautiful star?) one, too". He's happy to hear that, even I can tell, so I explain: "Yes. You always tried your best and you worked so hard. So hard for this car. You must have had to work an entire year for every day to earn this car".

He must be confused now – hoarse throat and at the same time he's grinning. Uncle Garmt. Shall we go now?

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 garmt2014-01-20 22:53:522014-01-20 22:53:52A little less conversation...
Page 49 of 66«‹4748495051›»

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