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Bring It On

Once again, Nick Cave saved me. A few weeks ago, I had a horrible weekend, a mini depression concentrated into two days. Feeling lonely and full of self-pity, I cried all Sunday, unable to stop even when Paul arrived to break my loneliness. Holy crap, did I feel miserable.
Why? Because I have ALS, you insensitive clod. Because movement requires machinery. Because the person wiping my butt isn’t me. Because the repetitive monotony of my daily routine would eventually grind the spirit of even the Dalai Lama to pulp. Because not a week goes by without the nagging thought that I should really be dead. Because I feel lonely, sometimes even in the company of friends. Because everyone is enjoying the summer, BBQs in the park or vacationing to beautiful places, except me. Because I would strangle someone for a beer, or a burger. Because without the distraction of eating, talking, moving, smelling, (should I mention masturbation yet again?). Without the energy to get wheeled outside, or do anything other than staring at a screen and willing my unwilling eyes to produce or consume something, all fucking day, every fucking day … where was I? Ah, yes, that in those circumstances, you can’t help but look at your life, and despite all your oh-so-clever mind tricks and all your glorious little “I-am-still-relevant!” projects, that despite all of that, let’s face it … my life is the shittiest shit of a category so shitty that I might as well have become a lawyer.
Paul has a long history of rescuing me from loneliness. Back in 2000, when I was living in New York (technically, New Jersey, but let’s keep that strictly between us, ok?), every Saturday when he got off work, Paul would call me during his walk home, hoping that I would not pick up. See, Paul ran a club, so his walk home started at 6AM on Sunday morning. Ah, New York, despite all of your ambition and zeal, you’ll be forever behind us Europeans. Six hours, in fact. So his call came at midnight, and every time I answered, Paul would know: shit, he is at home or at a bar that’s so dead it sounds like a bedroom. Yup, there I was, at home, playing StarCraft, or worse, studying to get better at my job. Saturday night. I wasn’t with friends, I wasn’t out enjoying the nightlife of the greatest city on earth. I was at home, alone, even though I wanted to be anywhere else. I hate, I detest lonely dull nights. Paul knew this, so he called and rescued me from loneliness, every Saturday night / Sunday morning.
Do you know what friendship is?
Anyway. Back to last weekend’s wallowing in misery. This time not even Paul, Miga or Menko could pull me out. My mental demons had some pretty irrefutable arguments, like: “What, you think you’re going to talk movement back into his body?” They tried, though, and through that, they got me ready for Nick Cave’s kick to my system that would jolt me out of my blues.
See, I wasn’t depressed, I just had an attitude problem. Saturday night, Miga and me watched an episode of  Peaky Blinders. At one point, Bring It On played briefly in the background. It tickled my brain, but I didn’t know why. Late Sunday night, I played it again. It’s from an excellent album, Nocturama. I found the opening song to be an extremely suitable soundtrack to your girlfriend breaking up with you to be with another man. Anyway, Bring It On. It was on the second listen that it hit me.
My very first private interview with a true Zen Master brought me right back to the question I had been asking myself since early adolescence. He said: “Perhaps it is good to ask yourself, ‘what do I really want?'” I was puzzled. Zen was supposed to be about selflessness, letting go of the ego, detaching from desire, etc. Right? Now, this small wrinkly old man was telling me to focus on a super egoistical matter: what _I_ want. Ok then. It kinda was my first koan. I had only been meditating for a few years, so I felt like I shouldn’t bite into it straight away. I would nibble at it from time to time. Later, I would focus a whole sesshin on it, dropping the question down into my belly, twenty half-hour meditations per day. What do I really want. What do I really want. WhatdoIreallywantwhatdoIreallywant. Every now and then, an answer would pop up: a BMW? No? Well, two BMWs then? Still no? No. None of that. Every answer was wrong, until finally, during my sixth sesshin, the right answer presented itself.
I went for my interview with the teacher. Blundering into his sacred room, I uttered, “I’ve finally found out what I really want!” He continued looking at the ground, right in front of his knees. He had been sitting on them, in seiza, for hours. His face was sweaty (seiza hurts, eventually) but serene. “And what, pray tell, is your answer?”
“Everything. I want everything.”
So, Sunday night. Nick Cave. It hit me. I was getting exactly what I wanted. Bring it on, life. Bring it on! I want all that you can lay on me. Not just the good bits – I want it all. Do not hold back, please. Bring it on, and see me fucking thrive through it all. Everything, please. I want ALL of it!
That attitude. That’s what was missing. It bounced me out of my blues, is still bouncing me out and in, ‘coz I’m not out of it yet. But if I cradle its’ spark I might, over time, light a torch with it and make my way out of this ugly place. I’m getting there, I think, or at least, I see some stars pointing the way: watching Zoe eat, I know that at least my appetite will live on. Or, playing Keezbord with Steph and friends, Iris and me, we show the world what happens if we team up. We win in such a devastatingly magnificent way that it hurt. Literally – the next day my few remaining muscles ache from laughing.
You know what one of the hardest things is, that life can bring? Praise. At least for me, it was. But more on that later. Foreshadowing, it’s a foreshadow, you got your foreskin and your foreshadow. That last line is a quote from the Peppers’ lead singer, so it must be true. Oh, c’mon, just smile to politely pretend you thought that was funny. Back to business.
The crux of wanting it ALL is in the “And not just the good bits”-part. When I said I wanted everything, I thought it meant: I want to be a consultant and a carpenter and a cook and I want to be more compassionate and also really rich and take responsibility oh and I want to be able to cook better than Menko and be great at … etc. Like a pig, in a cage, on antibiotics, I think now, looking back on what I thought I wanted back then.
Not just the good bits. Just like your emotions. You can’t just be happy, sadness wants to be felt as well. If you suppress one kind of emotion, the others go: “Fuck you, Mr. Sadness is our friend, if you don’t want him around, we won’t come either.” Life is the same way. You try to strive for pleasure and avoid pain, as you should, but if pain shows up, you can’t just ignore it. If you want Life to flow through you, you’d better be open to all it has to bring, not just the good bits. Don’t prefer. Fuck, this is one of the first lessons of Zen, and I don’t think I ever got it, until now, writing this. Thank you, reader, for giving me a reason to sit down and do this.
12 replies
  1. Jeanine Bult Borgers
    Jeanine Bult Borgers says:

    I don’t know where you get your stamina… to go on… I cannot even imagine … comparing my life with yours (at least, what I read into your own words)… I wish you all the best there is! -Jeanine

    Reply
  2. Ans Flentge
    Ans Flentge says:

    Garmt, je bent een echte knokker! Wat ben jij sterk zeg, zo sterk dat je ook je zwakke momenten weet te omschrijven. Ik bewonder de wilskracht die je hebt om zolang mogelijk bij Iris en Zoë te kunnen blijven. Maar ook de manier waarop je jezelf steeds weer herpakt! Chapeau!

    Reply
  3. Jetske
    Jetske says:

    Lol! “Attitude problems” !! Inderdaad Garmt, dit is omdenken 2.0!
    Dank aan Nick Cave voor de vonk.
    Dank aan Paul voor vriendschap.
    Dank aan jou,Garmt, voor het delen van dit inzicht. Inspirerend.
    Je maakt verschil en bent gelukkig gèèn advocaat geworden!
    Ik hoop dat je deze zaterdagnacht lekker slaapt met een mooie ALS-vrije droom.

    Reply
  4. Maria
    Maria says:

    You are a brillant writer. Being Terminal myself I get strenght from you. I admire the way you get on with the remaning time. I have no ALS or cancer, just a heart, lungs and kidnies that hardly work. I feel nearly blessed reading your stories. I am strong but you, you are a giant. Oh btw crying is really necessary now and than. Please forgive my spelling mistake. For ever your fan. Love from the Netherlands.

    Reply
  5. Liza
    Liza says:

    Heel erg bedankt weer voor deze woorden. Ik heb misschien wel bijna het tegenovergestelde van ALS, namelijk: een goed functionerend lichaam (tot nu toe) en een heel slecht functionerend hoofd (geen stabiel zelfgevoel, en nog meer, waar ik niet op in zal gaan want wat hebben we eraan) en jouw gevecht is dus heel anders maar toch ook herkenbaar. Wou zo enorm graag dat er een medicijn of behandeling was voor ALS. Misschien is dit wat ik nu ga zeggen erg naief en zweverig (bewijsmateriaal voor de stelling: hoofd werkt niet goed) maar: ik ben benieuwd wat intuitief voor jouw idee nodig is voor de genezing van ALS. Of is dat alles wat je tot nu toe op touw heb gezet (waar ik enorm veel bewondering voor heb), dat antwoord lijkt me ook wel logisch :P?

    Reply
  6. Christian
    Christian says:

    This post is baller. Thanks for being so open and honest in sharing your journey. I’ve learned a lot about life from reading your posts. Keep them coming!

    Reply
  7. Marieke
    Marieke says:

    Hey Garmt, over the last 1,5 years or so I’ve been reading your posts and comments every now and then. I’m always deeply touched. Many words, possible responses or ‘messages’ come to hart and mind every time I read your stories. Ultimately though, they somehow all seem irrelevant to offer you. Your commenters, they say it so well. And it’s like you already have all the love, support, strength and wisdom you need in and around you. Still.. I don’t know, I keep feeling this weird urge to offer you something, spiritually I guess. l’m still not a woman that walks out of the crowd and addresses the keynote speaker and I’ve always had a healthy scepsis regarding my personal urges, but hey, I can always ask, right? So, is there anything you personally need, like, look or long for that I might be able to give you? Or is it just me? In any case, this time -apparently- wanted to let you know I’m here, spiritually, listening, just like everybody else 🙂 Als er iets is, or if you ever feel like a conversation with a complete stranger, bring it on :-). Marieke

    Reply

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