Die Laughing

This post is not beautiful or nice. I started it to complain, and that is ugly.

I just got back from eight days in the hospital, to get nighttime breathing measured and assistive breathing configured. Let me start with miniblogs about why hospitals suck.

  • It feels like something is pulling hard at the inside of my stomach, because that is exactly what is happening. It is not a pleasant sensation. At home, the tube sticking out of my belly is always taped to my chest, but here, it dangles all day, which means the dangling end gets caught during transfers. I try to explain this but give up after a few tries.
  • Response time to the call button issometimes higher than my weakened sphincters can manage, so when the nurse finally arrives it is sometimes too late. She sees me and my wet lap and offers to put a towel over it. Answering no means she will leave. I need to literally spell out that I would rather not continue to soak in my own urine, and please could I have dry underpants?
  • One of the toilet visions is so degrading, with pain at every move we make and a total absence of communication so nerve-rattlingly dehumanizing, that I ask my visiting friend to take over their work and put me to bed. I just don’t want them to touch me anymore. Please. I know you need to and I know you are a good person but I cannot take more today.
  • I wake up, pain in my shoulder, I press the call button. The nurse asks how she can help me but answers herself: “Ah, you can’t say. Then, I don’t know.”. She walks away. I feel dread
  • She comes back. She has not read the communication instructions that came with my file but she tries. After a lot of fumbling we work it out. This is a theme that returns so, so often this week. I do not have the energy to explain, and suffer as a result. They ask, “Are you not well?”, and after a week I have memorized which nurse needs a yes and which nurse needs a no in response to get any effect other than “Ok, then!” and leaving me. The instructions were so clear. RTFM, I scream in silence.
  • The fourth time my leg slides out of bed, I trigger an alarm by wriggling the sensor off of my finger, as the call button is out of reach. For the next ten minutes, in an agonizing slow motion that pulls me apart bit by bit, I continue to slide out of bed, in a movement eerily resembling Mr. Bean, funny if it didn’t hurt so much. I look at the camera guarding me, but no one comes. I hear the alarm from my discarded sensor, but no one comes. Finally, with a loud thud, my upper body comes over the edge of the bed and my head hits the floor, ripping the hose from my breathing mask. Another alarm joins the cacophony, and I make the mistake of hoping that this alarm will be different, because it is not. After painful, desolate minutes during which I keep oddly calm, someone passing by in the hallway hears the noise and finds me.
  • The fresh doctor that examines me after the fall does understand the concept of yes/no questions, and is also the first person in this week of fuckups that I hear an actual apology from. When I finally get in front of the computer, I give him the details of the fall, crushing untrue excuses along the way, asking answerless questions such as, why were the guardrails down, and why were they not put up the first three times my legs were heaved back in the bed? Along the way I ask why my drugs have not been administered correctly for one single day, why the pharmacy of this huge hospital is still fumbling to even get them to my room, or why I get breakfast at 3PM. Yes, indeed, grave mistakes. Let us take the ultimate measure, and file an Incident Report.
Attenuating circumstances aplenty as to the why behind all this: the staff is new in this hospital, I could have done a better job myself explaining how to at least communicate with me. The nurses are all upbeat, cheerful, joking, patient, which is not easy when you work in a department where only seriously ill people come. But still, this is how my experience went. And what scares me the most, in my continuing fear of the nursing home, is the following two bullet points:
  • This was an academical hospital and everyone in my department must have treated loads of ALS patients before. This department had a ratio of one nurse per patient for sixteen hours per day and one nurse for two patients for the nighttime. 
  • A nursing home has one nurse for every ten to fifteen patients.
Anyway, enough ranting. 
When I did get home, I felt worthless. Not in the sense of, say, hung over. I felt I was without worth. Without value. Guilty to exist. Guilty about everything I did wrong, totally insecure about everything. Guilty about existing. That sort of mindset can be dangerous, because you start to act desperate. So when I find out that my close circle of friends is having dinner without me, I make the wrong move. I feel shut out, jealous, hurt, and knowing that I have nothing to get mad about (was I really expecting an invitation for a meal in an appartment on the third floor of a liftless building?), I whine and bitch, then catch myself doing it and stop. Close call, I could have ruined something there. I think. I am better now, I can see how pain turns into anger and escapes my body through destructive action, but as I write this, some twisted part of me wakes up and still wants to shout at them that I hope they choke on their perfect steak and drown in their fucking champagne.
Oh, you motherfucker, I moan to the disease. He grins, enjoying himself, whispers, hey, it is your personality, I just tickle it.
He is right, the motherfucker.
We take Zoe to the playground, I feel so horribly useless, I know better than to cry and draw attention, so I hold the pain inside, where it numbs and festers (hey, I may be at a low point in life, but at least I get to write pseudo-death-metal lyrics: “the pain inside numbs and festers” (really??)). The road upwards begins when the mother of another ten-month old makes contact by pointing out the extreme coolness of my wheelchair to said ten-month old. That ten-month old meets our ten-month old and a small nuclear bomb of cuteness explodes as they explore each others face with tiny fingers. On our way home Zoe is fascinated by a neighborhood cat, and I wonder, how come she so clearly recognizes a living thing from, say, the motorbike it is resting on? 
After a few nights in my own bed and my own environment I have recovered enough to take stock. Where am I now and what has that hospital visit cost me? Well, I am really getting to the last chapters in my book, that is where I am. I am also behind my monitor, almost all of my waking hours, in fact. Do I want to spend my last days like this? Do I have a choice? The challenge is still: don’t get bitter. Ok. Let’s give it another go. As for what this hospital visit has cost me: more than I care to admit. I have no idea how much lust for life I have left, but now I at least understand it is not infinite. And the burden I create for my loved ones is getting more and more difficult to live with. So, the hospital knocked some reality into me. I have always wanted my experiences to be as real as possible, so, thanks, I guess. Heh. You know, writing this stuff down is almost like Therapy? I start out with complaining and along the way something transformative pops up. 
Oh, as for the subject line, I stopped explaining them a while ago, but they are still relevant. Karma police, the song, expresses the quiet desperation I felt while writing the post, and the immature insanity of Die Laughing is appropriate for feeling worthless, and isn’t it Therapy?, too?
10 replies
  1. Ellen Koster
    Ellen Koster says:

    lieve lieve Garmt! Herinner jij mij nog? Ik was getrouwd met je oom Paul. Ik behoor al lang niet meer tot de familie van Soest. Maar ik heb herinneringen aan jou als roodharig ( pardon kastanje harig ) jongetje van een jaar of tien. Was het nog in Ulestraten?
    Je eigende jezelf een groot stuk van, de nog niet opgediende, vlaai toe en werd op je vingers getikt door Fransje. ” Garmt! We zijn met velen, we moeten delen!”
    Maar belangrijker voor mij is dat ik vrijwel elke ochtend aan je denk als ik mijn tenen droog na het douchen. Ik zie nog steeds hoe je de handdoek tussen je tenen doortrok na het commando van je vader: “tussen je tenen Garmt!” Ik heb die manier van je overgenomen, hoewel ik het toen met afgrijzen aanzag. Het is volkomen afdoende om voetschimmels en erger te voorkomen. Gek eigenlijk dat ik al jaren haast dagelijks even aan je denk en ik zal dat blijven doen ook als je er niet meer bent.
    Ik lees je verhalen en heb bewondering voor je hoe je steeds weer een weg weet te vinden om het onbeschrijfelijke te verwoorden.
    Ik wens jou en al je geliefden sterkte bij de laatste keuzes die je moet maken.
    I will remember you!

  2. Sterre
    Sterre says:

    Haa Garmt, wat een ongelooflijke ervaring in het ziekenhuis, gelijk een nachtmerrie. Bij een volgende keer (niet te hopen natuurlijk) kunnen eigen verzorgers ingeschakeld worden, om de helpende hand te bieden. Dit neemt ook de verpleging werk uit handen. Via pgb/wlz is het mogelijk dat die uitbetaald worden. Veel genoegen met je gezin en de Verzorgers. Groet.

  3. Jos de Vries Spaans
    Jos de Vries Spaans says:

    Dear Garmt, goede man 🙂
    Met ingehouden lees ik je ervaringen, lach en jank met je mee. Van jou leer ik vloeken en lachen en ervaar er de ultieme zelfspot en veerkracht in. Man wat heb ik een op gelofelijk respect voor jou, je vrouw, je familie en naaste vrienden . Wat een hopeloze toestand zeg, daar in dat ziekenhuis, dat kan echt beter. Als verpleegkundige vind ik dat dat echt een vette onvoldoende voor specialistische verpleging is. De keerzijde is dat ze door jou wel weer wakker zijn geschud, hoop ik dan maar. Garmt weet dat veel mensen met je verbonden zijn, hoe kloten eenzaam je fysieke strijd ook is. Dagelijks kijk ik op je AlsDanToch in de hoop steeds weer een glimp van je op te vangen. Ik wou dat ik meer kon doen, zoals veel mensen dat doen voor jou. Vanaf mijn plek in Hilversum en GGZ Job in Amsterdam, ben ik bij je in gedachten. Moge een energiestroom van Metta zich van je meestermaken, je pijnen verzachten.

    Jou in mijn gedachten en stilte oefeningen.
    Jos de Vries Spaans . 🙂

  4. Jos de Vries Spaans
    Jos de Vries Spaans says:

    Voor jou Garmt een gedicht van Toon Tellegen wat me erg aansprak

    Hoe meer zielen

    Ik heb één ziel
    die precies in mij past –

    Ik doe alles met mijn ziel
    Klop op mijn ziel en stof hem af
    Schaaf aan mij ziel en blaas krullen weg
    Boor gaten in mijn ziel en vul ze weer op
    Met nuchtere gedachten.

    Ik wou dat ik meer zielen had
    en van een ander soort
    Oneffen zielen kromme zielen
    en ook kleine weerbarstige zielen
    Zielen als spartelende zilvervisjes
    Als meisjes in een winterjas
    Zwarte Zielen

    Maar mijn ene Ziel –
    Een tamelijk vierkante effen en solide ziel –
    Vult reeds alle beschikbare ruimte
    En krimpt geen milimeter
    Zolang ik leef.

  5. José.ebbing
    José.ebbing says:

    Lieve garmt je bent vaak in mijn gedachten.ik ken je via de bruiloft van Dion en Karolien en heb nu je stukje gelezen. Mijn zoon Dirk kan ook niet praten en is doodsbang in het ziekenhuis. Hijwil er absoluut niet meer heen en voelt zich veel beter begrepen in zijn appartement met 24 uurs verpleging. Via Dion hoor ik hoe het met je gaat. Ik heb veel bewondering voor je en haal inspiratie uit jou strijd om mijn zoon beter te ondersteunen. José ebbing.

  6. Cari
    Cari says:

    Oh Garmt… Wat een k-ervaring. I feel for you. Fijn dat je weer thuis bent!

  7. Zoe Davies
    Zoe Davies says:

    It means so much that you take the time to write this blog. You articulate your thoughts and feelings so honestly and I can’t really put into words how much I love that I know the answer to the question “how are you doing”. Sending much love to you and your beautiful family x

  8. Hiske
    Hiske says:

    Hey Garmt. Wat een ontzettend nare ervaring zeg. Bizar gewoon.
    Wel weer heel mooi geschreven. Daarmee ben je in elk geval van superwaarde. Xx

  9. Scott Stuart
    Scott Stuart says:

    I agree with all comments you are truly amazing but always have been. It was wonderful to see you for what I know will be the last time. I am very glad we looked you up

    Scott and Lolly

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