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Even With ALS

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

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Old Man

29/09/2014/3 Comments/in English, Updates /by garmt

Dear Zoe,

Let’s get one thing straight: Your name is not Zoe, it’s Zoe-with-two-dots-on-the-e. Only people like myself or cousin Hannes are allowed to skip the dots.

Girl, there is something that I am about to say that counts as an insult unless you are eight months pregnant or a baby, which you are at the time of writing this (which makes me wonder, would writing as a term still exist by the time you read this? once upon a time we would say in Dutch “een nummer draaien” (to dial a number) when we called someone on the phone, and I remember a kid wondering what that meant, as we have not used phones with one of those turning dials in ages, but I digress, so) ehr, which is to say, you are a baby, not eight months pregnant, so here goes: Girl, you are getting BIG. You were born with average weight, and when the nurse came to measure you two weeks later you had grown so much, and when we first plotted you on a growth curve it was clear that you don’t follow those, you pole-vault them. Right now you are part of the biggest 2.77% of babies in The Netherlands. Good. I hate average. And I love you.

So many people love you. We received so, so many cards, gifts and wishes for you…Each of them a token of love and a gentle pang of guilt as I never send cards or bring newborn-gifts myself. Also, about 27 cards that said “told you so!! being a parent rocks!!”, which probably translates to “you were a dick when we got kids”. I think you have 47 stuffed animals, 3 bathrobes with your name embroidered on them, about 58 full sets of clothing, and a mystery tree. Yes. We received a tree as a gift but we don’t know who it is from.

A few years ago I snuck back to the farm where I lived for part of my youth. We planted a walnut tree there, wrist-thick at the time, and the bend at the base that I made driving into it with the lawnmower was still visible in the huge, enormous monster of a plant (trees are plants, right? please pay better attention at biology than I did). Everyone has an experience or story like this and I hope you get a lot of them.

Your mom, you probably know this already, but she is one tough cookie. Each morning I get into the shower and turn on the water and then I get a heart attack as the water is ice cold because that is how she left it. She does this not out of sleepy disattention, like me, but she voluntarily finishes her shower with ice cold water. Paul showed me a movie the other day of some super model, Doutzen Kroes, screaming “Look at her! And she just gave birth a few weeks ago!!! So thin!”, and I am not shitting you, but I really didn’t see that much of a difference between her and and your mom. Well, ok, I noticed Doutzen’s breasts were smaller.

You didn’t live at your first address for very long, your grandfather(s) moved us with the help of thirty (!) friends into the place where we live now, a beatiful appartment in the vibrant heart of Utrecht’s coziest neighbourhood. Vibrant because trucks drive by, and cozy because I couldn’t think of another metaphor for noisy. With the windows closed it is peaceful, but with the windows open, honestly, I lived in the middle of New York, and that was way less traffic noise than this. Well, to be precise, I lived in New York for three weeks, and when it became time to pay my own rent I moved to New Jersey (ask Paul for a nice anecdote about that barkeeper in that lounge). I walked right across Times Square each morning on the way to my overpaid job. I miss that city, each TV-series that plays there, like 30 Rock, takes me right back to it. But I digress, because I always do, and I whine about our new place because I have Jewish ancestry, I really love it.

Just a day after moving in we went to see crazy in action; a lot of people swimming through the canals of Amsterdam, raising money and awareness for a disease that will probably be harmless by the time you get to read this. And again, so many friends and family and colleagues were there… It was a special day for us and I just mention it here because the day was so wild, it shook up your mood so bad the days after that we had to start with Gina Ford. Now, Gina Ford used to be a drill sergeant for the Navy Seals, but she got fired for being too strict, so she became a nanny and wrote a book about getting your child to sleep. So far, my contribution to the mental work that goes into raising you was limited to the suggestion “why not use duct tape?”, which is really a solution for everything from leaky diapers to getting the pacifier to stay in your mouth or keep your arms from flailing too much, so I don’t really get why your mom did not follow my wisdom on that, butanyways, Gina Ford, your methods may be strict and cruel (to me, at least, because you used to sleep so peacefully on my chest, and now you are only allowed to sleep in your bed), but they work, it is good for you, you are really a happy baby now, even sleeping through the night, so… if you ever get babies yourself, it’s not a bad idea to dig her book out of the archives.

Oh, also, angels exist. And by that I don’t mean angelic behavior, there is plenty of that as well, like your grandmothers help or Jos showing up with a beautiful collage of pictures for our bedroom wall, or, I could go on, no, what I mean is people who briefly show up, show you something divine, and then they are gone. I never much used to believe in them and I don’t think I have an idea of a God, but I started seeing them, very sparsely, here and there. A few years ago I fainted in the best sandwich shop in Utrecht. I woke up and felt like shit for too long so an ambulance was called in. And the very moment that the ambulance guy walked in, grey and all smile, I immediately knew: I will be all right. How someone can do a job like that and give so much care to a fainted yup, I mean… Sometimes in life you will believe people are bad, and that there isn’t enough good in the universe, and that is dangerous, because then you start to act like you are expecting bad, and then you will get bad things indeed. So that ambulance guy was an angel (just like that nurse from the ER was, who treated me to attention so undivided I was reminded what zen was about, or Laura recently was, she won the war for us) and with that he grew my faith in humanity. It sounds a bit grand, but trust your old man, they are there, all the more so for you, starting with the ones on your geboortekaartje.

Speaking of Old Man, it is a song by Neil Young, and until recently I thought it was about some guy who is young talking to some guy who is old. No, it is actually about a young man talking to his dad. The most painful lyric heard in the past year is when he sings: “Doesn’t mean that much to me to mean that much to you”. That is one of my biggest fears; you may not care about your biological dad if you don’t remember him… By age 10 you could be sick and tired of stories about me, or have a whole new family. Oh, we’ll see. I hope you not only get to read these but that you will even want to. Meanwhile, I will keep writing. To close this first letter, my prequel if you will, others will read it but I might package this away for  when your first kid is a week old. Then you can look across generations; the picture below is a picture of me, one week old, next to you, one week old. Hold it next to him or her, perhaps we will be there with you, but if not, I hope this is a nice memory.

zoe

Love you more than I know,
Garmt

A few more pics; below here the picture of the Jos-and-friends-creation in our bedroom, friendship, Zoe at four weeks, my new tattoo sneak peek pt 2.

IXXI G&I

Collage of pictures from our past that brightens up our bedroom

Random friendship/galaxyguardianship picture

Random friendship/galaxyguardianship

Zoe drinking her milk

Zoe drinking her milk

Roots, bloody roots

Roots, bloody roots

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 garmt2014-09-29 09:12:372014-09-29 09:12:37Old Man
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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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