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Even With ALS

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

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Made from paper. Tangible, flammable, wow!

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Latest post

No subject today

29/08/2013/4 Comments/in English, Updates /by garmt

I'm starting to type this as I'm sitting at the beach. Lovely weather. Overlooking the see. Wedding. They are hard to enjoy these days, unfortunately. We're summoned for the pictures – E. in his suit which makes him look better than I'd like to admit, the rest of us, all nice. No problems. I ask a question to someone, get a joke as an answer, and have to try so hard not to punch that person in the face, that all I can do to help myself is just to walk away. For what? For a joke? Apparently. There's nothing wrong whatsoever with that person's response and yet… I'm drained, emotionally, of all my reserves, and try as I might it's hard not to take it out on other people. In my confusion it's like they're trying to hurt me even though it's really me hurting me through them.

 

Perhaps there's a reason why diaries are usually locked up and hiding underneath a bed. Or why they are associated with emotionally unstable adolescents (a pleonasm if there ever was one). Part of what I write is considered hurtful for and by some. I get requests for moderation and feedback that I'm using my disease as an excuse to say whatever I please. I´m being told to harden the fuck up. Please, Garmt, have some motherfucking consideration, act normal, will you, it´s been a month now. And -…. they´re right. Of course they are right. All my life I have known the right and the wrong decision. Each time I smoke a cigarette. Eat too much. Spend money on a three-star restaurant instead of on a charity. Yell at a friend instead of feel for him. Or more down-to-earth – I know when I am creating bad karma. Each and every tiny single bit of it, and I know beter than any and all of you that it will come back to haunt me when I need it least. So why add more now? Why continue to create bad karma? Because it takes energy? That I'm spending instead on looking for a cure which we all know IS NOT THERE or it wouldn't be called a motherfucking INCURABLE DISEASE now would it (Matthew, I'm just writing these lines to upset the profanity filter at your company), anyway, why waste energy on all these other things when I can use it to be a better person? Am I even a better person for applying censorship? Well, if I was in the other person's shoes, I would think me a better person for being considerate, for not spewing whatever comes up for the world to read (hey, 68 people on the list, and no more than a few hits, it's not the whole world, I know that, I'm not being arrogant here). I wouldn't want all thoughts other people have about me to be out there in the open, either. Right?

 

I'm torn – one the one hand, any and all of you who have any remote complaints about reading what I write, please feel invited to tell me to remove you from the list and to never look up the website again. You're most welcome to remove yourselves. On the other hand – I am trying to be a better person. But don't take that as a promise.

 

Thank you for having read chapter 1 of "how to cope with writing a personal blog". I'm sure everyone goes through this. We'll continue with chapter 2 next week.

 

Ah, one more thing. The pseudobulbar affect (read that link some time if you interact with me. I have it in a mild form now but it might impact how you communicate with me in the future) can account for laughing or crying but not for anger or punching someone in the face. If that happens I'm accountable for it msyelf.

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 garmt2013-08-29 18:36:332013-08-29 18:36:33No subject today
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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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