L’enfer, c’est les autres

Only a person as conflicted as me would choose a French quote to title a post intended for the most uni-linguistic audience of the world: Americans. My US friends keep asking for an update, so here I am.

Hell is other people, thought Sartre after watching CNN, then wrote a play around it, called it “No Exit” and drank some more Pernod or Cointreau or whatever it was French artsy types drank those days. I never finished reading the play, but that doesn’t stop me from misquoting him. “L’enfer, c’est les autres” has practically become my motto over the past weeks, coupled tightly with that other hell-proverb, “the road to hell is paved with good intentions”. Everyone around me tries their absolute best, but…

If you are one of the people taking care of me right now, please skip this post or understand that the following is free from blame or ill will.

Returning home from the tracheotomy was not the easy ride I thought it would be. Care has intensified to thirty hours per day. That is not a joke. There are two nurses in the mornings and evenings. Now two is a duo, but three is a committee. In a duo, not much needs to be said. We both know our jobs – I do nothing, the nurse does the rest. With two nurses, everything needs to be debated and discussed. I am surrounded by talking from the moment I open my eyes. Every. Single. Action is accompanied by words, nonstop chatter. Iris wakes up on Sunday to find three near-strangers conversing in her living room: that was the day shift relieving the night shift. There are also a few new ones in the team, and not all of them have learned that I’M NOT DEAF, so the chatter is interrupted with people shouting questions. Since the new nurses don’t know me yet, there are a lot of questions. I counted them one morning – 178 questions before I’d had my first coffee.

Every new nurse has to make the same initial mistakes, so with five new nurses… Also, 24/7 care means literally never being alone again. No more privacy. Everything I do goes via a computer screen, out there for everyone to read along. Most of the nurses don’t comment when I shop, chat or write. Most of them. Others still have to learn not to offer unsolicited feedback on my writing process, or to stay out of a conversation between Iris and me.

A little push, here, to get me into bed, and my leg folds like it hasn’t folded in a year, popping my knee so I lie awake for hours from the pain. I get a new piece to an existing tattoo. Basically, the skin is an open wound for the first 24 hours, which is carefully noted down in the log book, which the guy that grips right in the painful spot hasn’t read yet. Same for the woman who tries to calm me down by rubbing and patting my wrist – right on the new tattoo. There are so many big and small mistakes, it feels like all I’ve been doing for weeks on end, is trying to get the newbies to stop killing me. It’s a good thing I can still breathe without a machine (which is what I do for most of my waking hours) or I’d be blundered to death by now. When it isn’t the newbies, it’s the new acts of torture that come with the tracheo, which require gloves, which some nurses now wear full time. That might seem like such a tiny detail, but it increases the distance between them and me, reducing my humanity even further. I now spasmbite on my tongue so hard and so often that it’s a miracle it’s still in one piece.

Zoe can’t always rescue me. She has too much living to do and I feel I should be there for her, not the other way ’round. The house is busier now, and I think she only enjoys my company when she’s calm. I watch her a lot, but interaction is so limited, a handful of brief moments per week, that I get convinced I should just finish my to-do list and check out. I’m of very little use to her.

I know everyone is trying real hard, and that it takes time to get used to each other, so I dose my feedback very carefully. At first I only point out dangerous situations, or when they hurt me too much. I see the concern and worry in their eyes and it hurts to conclude that I have to dismiss several of the new nurses, and two of my longest-serving ones are leaving. But that’s not the worst of it. The worst of it, is that my world consists only of this. There is nothing but these petty annoyances. They look downright laughable now I’ve written them down, but a week ago, when I was in the thick of it, all I could think of was death and how soon I should invite it in. Dark days. I just did not have enough energy. All I could do was suffer, for weeks on end, with no noticeable improvement. For the first time in my life, I knew real despair. I’d felt it before, but I’d always had enough energy to act it. Real hopelessness doesn’t do drama.

The turning point surprised me. I wasn’t really expecting one anymore. It didn’t feel like a turning point at first, but somehow, the idea of visiting Martijn with some friends came to mind. He had something new to show us, so off we went. Scary, because I hadn’t taken a trip with this new hole in my throat. The nurse that day was brand new in the team, but we’d been getting luckier. She was from a new specialized group we have found, and she was nearly as good on day one as some of my most experienced nurses. We packed enough medical supplies to set up a clinic and boarded the taxi. Next I found myself in Martijn & Marieke’s living room, with friends. The group in the room had experienced trips to Japan, Brazil, the USA (coast to coast), Scotland, the Savoy and countless other adventures with me. None of that matters now, though. All that matters now is the two-week-old bundle of cuteness that’s dozing in my lap. Paul, Menko, Miga and me mull over the idea that we’re all fathers now – where did our youth go? She’s so tiny – no way was Zoe that small! (Checking pictures later on confirms that she was) And for the entire duration of our visit, their brand new daughter lay in my lap while Martijn and Marieke beamed with pride. I was completely mesmerized by her. I watched her dream, doze, move. We have so much in common! Neither of us can speak, chew, control our limbs or drive a Ferrari. We both cry a lot. I vanish when she makes eye contact, and my belly pushes her feet with the flow of my breath. I realize that Sartre was half right. Sure, sometimes other people are hell. Right now though, other people are heaven, one in particular. Welcome, Nyke Robin Marjanne Post!


I can’t get no sleep (have I used this reference before?) the night after meeting Nyke. From midnight to three AM (… no, I haven’t referenced Faithless yet, it was KLF) I ponder the Matrix trilogy and realize the reason I thought, ten years ago, that the third movie was crap, is because I didn’t understand it at the time. Woah. It still doesn’t make the trilogy the masterpiece that the first part was, but this is a nice thing to discover, and I chew for a while on what the Wachowski brothers (back then, at least) were trying to show me about life. Suddenly it is six AM and I am wide awake again. I wonder where this nervous energy comes from? As if delivered straight into my chest like a parcel, like a new Iron Man engine or something. I trace my body from the inside, running a mental finger along the inside of my skull, trying to find out where this is coming from (Zoe? Nyke? Heavenisotherpeople? Perhaps simply that I kicked myself out the door again?) and what does it mean? Some odd part of me wakes up and answers: Oh, crap. Here we go again. I thought we were finally done? Does this mean that dying is off the table? Well, I don’t know, this might just be a final twitch. I will probably continue on the downward spiral. But for now, there is a little piece of positivity, brimming with energy, of, well, life. Stop thinking and live it!

7 replies
  1. Ans Flentge
    Ans Flentge says:

    Garmt, je bent een voorbeeld voor vele mensen. Kan me zo goed voorstellen dat je ermee kapt. Maar dat je door de kleine dingen in het leven toch weer de kracht en vreugde in het leven ziet. Chapeau! Er zijn vele mensen die zeuren en klagen om niks. Jij hebt het recht om je beklag te doen, soms trek je het gewoon niet, heel begrijpelijk. Ik wens je heel veel sterkte en mocht de tijd rijp zijn, je hebt je strijd dan gestreden tot het bittere eind. Tabé Garmt je bent een kanjer.
    En dankjewel dat je ons een kijkje in je leven hebt gegeven!

  2. Ria Mertens
    Ria Mertens says:

    Ans heeft al mijn gedachten en gevoelens verwoord. Ik wens je nog meer mooie momenten toe die de duistere gevoelens even verlichten.

  3. Marlene
    Marlene says:

    Hey Garm!
    Ik tune natuuuuurlijk veel te laat in! Heb je boek al thuis liggen sinds de Amsterdam City Swim, die ik zwom voor mijn moeder die aan ALS leed. Gezien het toen te close was, of whatever denk geen tijd, het toen niet gelezen. Maarja long story en who the hell cares :D. Ik ben eergister in je boek begonnen en nu is t bijna uit en lees ik dit blog… Mijn moeder is helaas in januari aan ALS overleden en heeft tot het eind gestreden. En ik herken zoooo veel in jouw verhalen en ook dit verhaal weer…

    En weet je; hoe lang het ook nog mag duren wat ik ervaren heb; het zijn juist die hele kleine dingen die voor mijn moeder (en daardoor voor mij de sparkles waren die haar keer op keer weer de kracht gaven om er toch weer even voor te gaan en haar de positiviteit gaven ondanks dat ze niks meer kon. En zo was het het klik aan klik uit systeem van de kerstboom, dan weer het leed vermaak van iemand die door een bad gezakt was, of het kennis maken van een nieuw iemand. Kleine dingen die toch weer voor een tijd energie geven!

    En dat jij je kut voelt en enkel soms maar een last voor je omgeving; dat is heel logisch. En wat ik vaak tegen mijn moeder zei en ook echt oprecht meen; zij zei tegen mij altijd “Marlene het is voor jou te zwaar” en ja het was zwaar. Maar ik had het graag met alle liefde en met heel mijn hart nog tot in den eeuwigheid willen doen!. En ik denk dat jij dit ook voor velen om je heen betekent.

    So keep on fighting en ook ondanks alle shit is hopelijk het leven nog steeds heel erg mooi en om van te genieten!!

    En dan van vechten de anderen wel door tegen de ALS! Zoals ik en vele anderen en jij door al jouw acties in het verleden en wellicht nu nog (geen idee)

    En sorry voor de confrontatie dat ik zo een hele lap tekst neerflikker waar jij honderd oog lichtjaren over doe… :(((

  4. Manon
    Manon says:

    Lieve Garmt,

    Diep ontroerd en diep geraakt door jouw blog.
    De cursor knippert na deze voorgaande zin minutenlang op 1 plek, want alles wat ik bedenk te willen zeggen, klinkt in mijn hoofd zo banaal en nogal cliche.
    Dan toch maar zoals het als eerste in me opkwam: je hebt met deze blog (met de ervaring die je had…) de kern van iets geraakt. Iets dat er heel erg toe doet voor iedereen. Ik vind het prachtig en een groot talent dat je het zo hebt kunnen verwoorden. Dankjewel voor het delen.
    Liefs, Manon

  5. James Faust
    James Faust says:

    Thank you for the post in English Garmt! I’m actually learning Dutch lately, but when you try to learn it in Belgium, they try to call it Flemish…. If you can stand another visitor, I’d like to come up one day.
    On Saturday I started working on a blog site to go with the donation campaign page I’m setting up on ProjectMine.com. Will share the blog link with you when a bit further along. I’m around 80% done since it’s not a complicated blog. Just need to figure out some mechanics since I’m not exactly what you’d call a web master….
    Hope to see you soon!

  6. Walevska
    Walevska says:

    Garmt –
    Three days after reading your post, here I am hoping that the few words I can muster really are not as vacuous as they seem to me.
    You have so much life within you that I know this is something Zoe is drawing from and will enrich her when she becomes more aware.
    You and I are strangers bound by something as weak as a common company and a feature on Spotlight On.. And yet you have the gift of making that bond mean something.
    Thank you, as ever, for letting me in.

    DALI : “L’unique différence entre un fou et moi, c’est que je ne suis pas fou.”

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