My wife was in a hospital bed and I was sitting next to her, as I should have been. It was at the beginning of this year, a planned operation, nothing serious. That’s easy to say, no big deal, if it’s not you lying there. Lynn recovered from the anesthesia and asked if I knew this room. Yes, I had already recognized the room.
She started an emotional story, perhaps helped by the anesthesia, about the last day my mother was alive, in 2022. That did not happen exactly in this room, but on the same floor of this hospital, the interior looked identical. The bed was also to the right of the door, next to the window, across from the private bathroom.
With short pauses, Lynn talked about the song she had put on that last day, by The Temptations, and how my mother could barely move, but was still tapping her fingers to the music. In my own mind I went back to one of the times I sat with my mother at the pulmonologist, a few months earlier. The doctor who referred her to the Antoni van Leeuwenhoek hospital because they ‘had more knowledge’ there.
We were now in that hospital too. Where my mother was then told that the cancer had spread too far, there was nothing more they could do for her. At that moment I thought: the pulmonologist in the other hospital did not dare to tell me this.
With him the conversations were so cheerful and hopeful, full of methods that we could still try. Or he explained again that almost everyone gets lung cancer from smoking, only my mother’s variant was for non-smokers. One day I asked, half seriously and laughing, but I still wanted to know, whether this form of cancer was actually hereditary. My mother punched me in the stomach – was this what should I ask if necessary, or whether I could get it myself later?
I can’t count how many times I’ve been in hospitals over the years. Next to Lynn, who was diagnosed with breast cancer and could be cured. And then at my mother’s side, for whom things ended less fortunately.
This last time, last February, my wife was allowed to go home on the day of the operation. While we were gathering her things in the room, the nurse overheard Lynn and I talking about how nicely we had relieved each other: I had just recovered from my own operation, so now I could care for her at home instead of the other way around.
The nurse asked if my operation had also been done here, i.e. in the cancer hospital.
“No,” I said. “Fortunately not.”
Hold hands, ask questions
This is the division of roles. Someone else is the patient and I’m sitting next to it. Whether it is my wife, my mother or one of the children, she should be in that hospital bed and my position is that of the supposedly stable caregiver. The procedure is always the same. Hold hands, ask questions, be involved or at least give the impression that you are committed.
It comes close, yet remains at a distance. If the potential consequences of the cancer are discussed it is not mine life that may soon end. I can play the good son/father/husband and sit next to a hospital bed for hours, but I it is not me who remains there alone after the visitors have left. Finally I get up, walk out of the building and am back in my own life, where I have control and sleep at home in my familiar bed.
And then things didn’t go as they should anymore. First I had pain in my knee. After two years of examinations and photos, it turned out not to be my knee, but a hip that needed to be replaced. Who around me got a worn out hip? The surgeon added that it was an operation that was usually performed on the elderly, the average age was eighty.
My experience as a second was mainly gained in the AvL. The cancer hospital is a clean, relatively luxurious environment where all visitors nod to each other with appropriate compassion: I feel what you are going through, we are in the same position.
Now I was suddenly pushed forward in a wheelchair through the BovenIJ hospital in Amsterdam-Noord. There it was, how do you say that politely, more popular? My first ever night in a hospital was spent with two roommates. An older man who did not make it clear to me whether he spoke Dutch. From his body language and the sounds he was making, all I could tell was that he looked more dead than alive.
The only thing that mattered: how do I get rid of this room as quickly as possible?
The other roommate was more talkative. He talked about the house on the allotment garden that served as a home, in a rough part of Amsterdam North, after his ex-wife had thrown him out. One night while drunk he had fallen so hard that his leg suffered a compound fracture and now he had been here for a week.
What is it like to find yourself in a hospital bed? It’s not like there was a choice, without this surgery I would never be able to move normally again. But it felt, what’s the right word, helpless? Powerless? Being in a hospital, that’s for all those other people, something like that shouldn’t happen to me.
The exuberant nurse who entered the room at six in the morning addressed everyone Darling or Darling when inquiring about bodily functions – whether it was me or the indeterminate figure dying, or the hedonist from the garden shed, we were all reduced to the same thing. Men who needed care.
No matter how comfortable or privileged your life was outside the hospital, it didn’t matter in the room where we lay together. The nurse didn’t know who we were or what else we did in life. Being here also made me understand how unimportant that was. The only thing that mattered: how do I get rid of this room as quickly as possible?
After a night in the hospital, I was allowed to continue recovering at home. It took a month before I could walk normally again.
‘My mother also had ALS’
When I heard people complain about aches and pains, my first thought was always: don’t exaggerate so much, we are all looking for affection and attention, you don’t need to manipulate that with this form of posturing. Hadn’t I recovered without any complaints and was now walking around again with my new hip?
And then the pain in my legs started, six months after the hip operation. The last time I could move outside my house, I cycled to a work appointment. Normally a twenty minute ride, now it took me 45 minutes. The lady I had met with saw how difficult I was moving. “I know,” she said. ‘My mother also had ALS.’
For years, I lay in bed at night next to a woman who wondered if the cancer would come back. Maybe it was spreading through her body again without us knowing and it would already be too late when it was discovered. In the early years, when she got the cancer and our youngest son had just started primary school, her great fear was: what if I don’t survive this, will he remember who I am later?
When you are next to it, it is easy to say: of course this will be fine, the doctors have the cancer under control, don’t worry.
I had never made the connection between the sudden pain in my legs and ALS. But when someone says those letters to you, it gets stuck in your head. Your own cruel death by suffocation because the muscles with which you breathe ultimately no longer work – that is a bit more difficult to put into perspective than the cancer cells in someone else’s body.
Just some fragments of thoughts during a morphine-defined night in the hospital after the second operation within eight months. Will this be my new life? How is it possible that my family gets up after visiting hours to go home and that I left here alone without being able to get up from bed, what kind of strange reversal is that? Why am I in a room with two complete strangers, one of whom lies next to me all night screaming that she is dying and the other of whom screams at her that she has the pain threshold of a mosquito? And why does the door to the hallway remain open all night, where do those other voices with death cries come from, who are those anonymous shadows? And yet another reversal: all my life I have told everyone not to dramatize their ailments so much and now that I have something myself, I immediately start to get delirious about how pathetic I am, but still: I can still feel my legs, the operation was successful and – I woke up to pee, but I couldn’t get up.
Explosion of self-pity
Back in time. To two weeks before my last operation. Message from my publisher. When can we schedule your new novel? This must be determined months in advance. If you want to invest years of your life in writing a novel in this day and age, it really has to come from within yourself. You must have the conviction that the world cannot survive without this story and that there are people out there who will choose the pages of this book over the screen of their phone. In your own mind it becomes vitally important that this book is published.
Before the operation you cannot walk and you lie at home in bed waiting for delivery. In the weeks after the operation, when you think you finally have time and rest, you are unable to do anything due to the pain and the anesthesia of the painkillers. What questions do you ask during this explosion of self-pity? When can I move on with my life, how long will this take? Why is this happening to me for the second time in a year, all that wasted time? Can I ever finish that book? And have I recovered in time for my wife’s planned operation?
I finished in time to sit next to her bed. In the hospital room that looked so similar to where my mother lay. At the end, when she could still talk, my mother kept talking about the learning experience what life was according to her.
What did having these two operations bring me, except that I could walk normally again and then not for a while, but eventually I could again? Lost time, worries about work, the thought that your life has more value than that of a drunk man with a shattered leg living in a garden shed, everything you thought was so important – it all means nothing if you’re not healthy. You have no choice but to accept the situation. Oh yes, and I had learned that you only really understand what a hospital bed feels like when you lie in it yourself. It was a bit childish to be so selfish. Embarrassing too.
