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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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Do you have ALS yourself? Click here!

Latest post

Garmt

28/10/2017/6 Comments/in English, Updates /by garmt

So I’m dead. That’s not so bad, at least, not for me. I do not want to diminish your grief. I wish I could comfort you all, I hate the idea that my death is hurting you. But, for me, it’s not so bad. I have done as much as I possibly could do and died with a smile. Satisfied. I died like myself, like Garmt, the man I am. Used to be.

It has been quite a luxurious death. I had been dying for weeks. My head ached while life was gradually slipping out. With every farewell I died a little. As every day dawned I gave up a part of the fight. It is a beautiful way to (let) go. I could almost fly with all the feathers I have received in the last few weeks (shoved up my ass). With all the love and so many loved ones surrounding me while dying, for years already, I have been permitted an exceptional luxury.

My message, the one I want the whole world to hear is quite clear, isn’t it? No? Then just buy my book! Ha ha! Okay then, here are a few last tips – apart from the fact that everyone must live and die just like me, damn it.

  • Buy the most expensive speakers you can afford – seriously.
  • Loving yourself is empty of meaning if you don’t learn to balance it, by being tough on yourself too.
  • I have learnt recently from Iris that there are some things you must learn to ‘let go’. Pick your battles and don’t hold grudges. Please try to learn this quicker than I did.
  • Don’t scratch your balls if you have been cutting up red peppers. This is something I can’t repeat often enough.
  • Learn to listen. “Everything” will give you an answer if you listen well.
  • Do as I do, or actually don’t. Discover who you really are and then be yourself.

I pick a few names from the endless list of those to whom I owe a huge debt of gratitude.

First of all, Iris. It is difficult to imagine how you kept on going. Through it all, we managed to stay faithful to each other, in our own way, a way that even we ourselves did not always quite understand. I am so amazingly grateful that Zoë will grow up with you by her side. It is a wonderful thing that we found each other and that we stayed together. I am with you still.

I was a pain in the ass for the health system. Worse still, I was actually proud of that. For example, the rehabilitation specialist had to call me to order when once again, I accused a well-meaning dietician of being like Hitler. Sorry.
The combination of euthanasia and organ donations was not yet practiced in this province. So an obstinate paralysed professional critic was indeed a fine first opportunity for the hospital, wasn’t it? The complexity of the whole operation was almost unimaginable. The full team of specialists in the UMCU and everybody working with them, deserve my profound thanks for making possible my last wish. Thank you so very much. The two doctors who monitored my care at home gave me a service beyond price. Thank you, Inge. Thank you, Irene.

ALS, I wish you’ll drop dead and I know you feel the pain of my kick in your balls. You’ve taken my future, you caused only pain to those whom I love and you robbed my family. You are a bastard and you will die, eventually.  And yet, and also… Thanks for your inspiration and the fight. Thank you for your guts to stand up to me. Thank you for what you brought out in me and thank you for the luxurious death.

Zoë, without your love I could not have coped for so long. Iris, I love you.

My love and light remain. Just feel, take a look. I’m still there. 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 garmt2017-10-28 16:09:592017-10-28 16:11:59Garmt
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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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