Author’s note: I wrote the first version of this blog post in February 2019, almost three years after I had a stroke. I did not post that version, because I believe that, especially when it comes to things that are very personal and intense, it’s better to wait until I have some distance – in time, space and/or emotionally – from what I’m writing about. Now, two years after that first version, I do feel that I have enough of a distance from what I’m writing about. Despite this, I did have a lot of doubts if I should publish this post, because it’s not a fun story. Eventually, I decided to publish it anyway, exactly because it’s not a fun story.
There’s a huge pressure, both in the media and in society at large, to frame stories about sickness and “recovery” in a particular way, in a particular format that basically follows the narrative of a fairy tale: it’s bad for a bit, but then Annie (or Marie, or Peter) gets all the help and support she could ever want and need. Every problem Annie has ever had in her life, no matter how far-reaching, no matter how long that problem has existed, gets solved. The situation makes Annie realise things she had never realised before, and not only does she effortlessly get better without ever suffering a single side effect, her life actually gets even better than it was! Finally, Annie concludes that her illness or accident is the best thing that could have ever happened to her, and solemnly states that she wouldn’t have wanted to miss it for the world.
While I do understand that this type of story gives the reader/listener a feeling of relief, in no way does this narrative do justice to the actual lived reality of many, no, most who suffer illness or accidents. By telling my story I want to distance myself from this toxic positive narrative that I’ve been feeling pressured into both implicitly and explicitly for years now.
I’m also posting this in the hopes that others, both sick and non-sick, can get something out of it. I hope that my story gives people things to think about, or maybe confirms that when it comes to certain experiences and feelings, you’re (in this case sadly) never alone.
Five years ago today, I was admitted to the hospital with a stroke. That’s the short version. The long version is that I woke up two days earlier with a headache, and needing to throw up. I remember thinking that was weird, as I can count the times I’ve thrown up in my life on two hands. I’ve also very rarely had headaches. The thought “I think I’m having a stoke” popped up in my head, which is significantly less weird when you know I used to work at the Neurosurgery Department of one of the academic hospitals here in Amsterdam. I did the FAST check: no matter how hard I squished my face together, it stayed symmetrical. I closed my eyes and touched the tip of my nose: no problem there. I put my hands up in the air and swung them side to side: looked fine to me. I said: “Australopithecus”, looked at my brows in the mirror and thought: “Nah, more like Cro-Magnon” and laughed. In the meantime, I massaged the back of my head and the pain started to shift, so I concluded: nope, not a stroke, just a sore neck from sleeping in a strange position and I’ve probably caught some virus or other. In those days I was sick every three weeks, so I just went back to bed and hoped I would feel better soon. On day two I actually did feel better, but on the third day I felt so awful that I knew something was wrong. Very, very wrong. I had a hard time thinking, I had a hard time speaking, and for some reason I kept bumping into things. I needed to get to my family doctor and she would most likely send me on to the hospital, so I started packing an overnight bag.
Note for the non-Dutch: here in The Netherlands, when it’s not an emergency, you need a referral from your family doctor to go see a specialist at the hospital. I know that in this case it was an emergency, but I’ll get to that later.
When looking for my glasses, I could not find them. I was convinced I had put them on my night stand, like I did every night. Maybe they had fallen on the floor? I gently turned my head, that felt like it could explode at any second, to the right and saw my glasses. They were on the nightstand, where they were supposed to be. When I turned my head slowly back to the left, they disappeared. I lifted my hand up to the right side of my face. My hand disappeared. I lowered my hand and it reappeared. “Fuck, I’ve lost part of my vision” I realised, and felt an icy calm come over me. I carefully left my apartment, locked the door, made sure to put my key safely in my bag, and – one foot in front of the other – walked my way to the bus stop.
The complete absurdity that, being in this state, I did not call an ambulance but instead took a bus and a tram to get to my family doctor, who put me in a taxi to get to the hospital as quickly as possible, after which I took a 2 km (= 1,2 mile) wrong turn before finally getting to the Emergency Department, only struck me days later.
At the Emergency Department the nurse asked all the right questions and I realised that, fuck, I had indeed had a stroke and that we were way past the critical 6 hour mark. They did tests and gave me lots of pills, then wheelchaired me up to Medium Care, where they stuck 2 IVs and 1 measuring line in me and 16 monitor lines on me and hooked me up to machines. The bed they gave me stood exactly where years ago, before the big remodel, my desk had been. The view at night was exactly the same as at 7:45 am.
After having been extensively tested, it turned out that I had a hypertensive crisis, which is a fancy term for, in my case, having twice the blood pressure of a normal person. This had caused a stroke, which caused aphasia (that means that you have a hard time speaking) and partial blindness. I also had a dilation of my aorta, hypertrophic cardiomyopathy, and my heart valve wasn’t closing properly. On top of that, my kidneys were in a bad state. It took 10 days, 7 failing IVs, and a very traumatic nightly readmittance to the Medium Care unit before I was in well enough of a shape to leave the hospital.
This is the point at which everybody thinks: “Great! You can see and talk again, your blood pressure is withing acceptable range, you can get back to your daily life!” And that’s where they’re wrong. The next months were filled with hospital visits, tests and more tests, medication changes, pharmacy issues, nightmares in which I was still tethered to the bed by the 19 IV’s and lines, out of which I would wake up screaming, EMDR-therapy to try to get those nightmares to eventually stop, dosage changes and side effects.
Side effects. The word makes it sound unimportant, of no consequence. In my case however, these “side effects” meant fluid retention to the point that my legs hurt constantly and looked like tree trunks. The pressure of the fluid made small blood vessels on my legs burst and even led to Meralgia Paresthetica. The literal definition of Meralgia Paresthetica is “numbness or pain in the outer thigh not caused by injury to the thigh, but by injury to a nerve that extends from the spinal column to the thigh”. It however feels like somebody is holding two blowtorches to your legs 24/7. And I don’t mean the small ones, I mean the ones that you can use to fix your roof with. I switched medications and about two months later, the agony slowly started to subside. Then I got shingles. In the meantime, I was also dealing with anemia due to having periods every two weeks, that then lasted 10 days (yes, this is correct), because the Young Stroke Protocol forbade me to use my birth control pill due to it containing estrogen. A quick Google search then taught me that there’s a birth control pill available that doesn’t contain any estrogen (the “minipil”), which none of my many doctors had ever heard about. Not that I blame them, you can’t know everything, and it enabled them to answer “Yes” to the “Is the patient taking an active interest in her recovery?” question.
I am not sharing all this to garner pity, but to illustrate the severity of the aftermath of “the stroke”. And to kinda justify why, after a year of this agony, I went completely ballistic on a therapist (of all people!) when she said: “But why are you still so upset about that stoke you had? I mean, it’s over now.”
The thing is that even today, 5 years later, it’s not “over”. I am extremely lucky to be living in a country where health insurance and health care is accessible for most people, and where I don’t run the risk of having to pay copays of tens of thousands of euros. I am very lucky to be living close to an internationally acclaimed academic hospital, where they took excellent care of me. I am very lucky that my body responded to treatment and that I’ve recovered as much as possible. My recovery has been called “Miraculous” by doctors, and while I get that it’s fun to say that, it doesn’t feel that way.
I will have to keep taking medications every day for the rest of my life. I will have to regularly undergo tests and see doctors for the rest of my life. Every problem I had before the stroke, only got worse once I had the stroke, and I acquired a good amount of new ones too. All my fears, that were quite severe to begin with (I have Generalised Anxiety Disorder) rose to a level where I was all terrified, all the time, and it took a lot of effort to get those back to an acceptable level. The eating disorder that I’ve been dealing with on and off in various forms over the years also made a comeback, and while I have now undergone 4 years of treatment and am doing significantly better than I was, I am not where I wanted and should have been in that process. Correction: I am not where I could have been, had I not had that stroke.
The 1st of March 2016, the day on which I had a stroke, was also the day that I was finally just one thesis away from a BA in English. The whole study process had been pretty awful, but I was finally almost at the end, and I had already gotten my reward: I had a conditional offer to study Creative Writing (MA) in Kingston upon Thames in the UK. Due to the stroke and the long aftermath it took me until November 2019 before I finally graduated. In the 3 years it took for me to get back to finishing my thesis, I was so ashamed of myself (I mean, I had a “miraculous recovery”? I wasn’t stupid or was I?), that I at one point just lied to the people who kept asking if I had finally graduated, and told them that, yes, I had. And because it’s exhausting to keep the lie up and not accidentally tell on yourself, I from that moment on avoided these people as much as I could.
The Creative Writing MA of course also didn’t happen and because of Brexit the tuition has now doubled, so that’s no longer an option. Sure, there’s worse things in the world, but I specifically chose to do the BA in English so that I could do an MA in Creative Writing. And that BA in English with its ridiculous workload contributed in a large part to me working myself to exhaustion to the point that I had a stroke. Painful, isn’t it?
My small group of family and friends has, like after every trauma, gotten smaller. I didn’t make any new acquaintances, let alone friends, because I didn’t even know how to relate to people anymore. I had nothing positive, or even just lighthearted to share. On top of that, at one point I had 4 medical specialists and 5 therapists, I was completely out-peopled once the weekend came around. It was only at the beginning of 2020 that I felt that there was space in both my calendar and my head to actively reenter human society and open up to new experiences, and then the pandemic happened. And now nobody knows how to relate to anything anymore.
For the people who wonder why I haven’t reached out to people who are suffering with the same issues, it’s because I can’t. Keeping myself together both mentally and physically takes so much out of me, that I don’t have the energy to engage in relationships that are solely based on (shared) misery. I know there are people for whom having a peer support group works wonders, but experiences in the past have taught me that it’s not for me.
Which brings us to Other People. Interactions with other people have always been an issue. I mean, I’m not shy or awkward or any of those things. I am great at small talk and I know that people enjoy talking to me, but as soon as it does further than surface levels, things get difficult for me. It has something to do with not being good at enforcing boundaries, of not really knowing who I am and where I stand, of not being good at asserting myself. See also: Why I should never join a peer support group or do group therapy.
Non-sick people will feel bad for your for a while, but sooner rather than later they expect you to be completely healthy and back to normal. Normal-normal, not chronically ill-normal of course. And you’re not supposed to have any negative feelings about what happened to you at all, on the contrary: you need to be thankful, you need to feel like it has taught you something important, you need to feel like it has made you a better person. Toxic positivity rules everything around me, basically. And maybe that’s what hurts the most, that people expect me to have a fun soundbite, a life lesson, a happy ending. It hurts that having a stroke at 40, with everything that came with it and because of it, cannot just be a horrible thing that happened to me, a thing that threw my entire life off track. No, it has to be something that I am obligated to repackage in a way that is palatable for public consumption. And the worst thing is, I often, no, usually do.
People don’t want to hear the truth, and I don’t want to be looked at with pity or immediately be the outsider they try to get away from or avoid as much as possible. So I keep up appearances, and lie a lot to create a nicer version of my reality. Let’s just call it creative writing. I smile and say “Thank you” to the people calling me “Such a positive and resilient person!” I am in no way a positive or resilient person. I used to be a dancer, I was trained to be the consummate professional performer. Dancers don’t feel pain and never cry on stage. Dancers make it look easy for the people. And where I don’t perform on stages anymore, in daily life, I perform every day.
I have comforted several people who hardly know me with the fact that I had a stroke. Yes, you can take a moment to let that one sink in.
I pretend that some people I know from way back when act completely normal when they meet me. I pretend not to notice that they act in a strange, tense and uncomfortable manner around me in particular. I pretend not to notice that they treat me like I’m contaminated, contagious even. I pretend not to remember that they used to call me “brilliant, amazing, a rockstar”. You know, Before The Stroke. When I was still of value to them. I of course would rather have a stroke than be such a piece of shit human being who only “cares” about people as long as they are of value to you, but let’s not digress.
People feeling uncomfortable around me irritates me. I always feel like screaming: “Oh, YOU are having a hard time with it? What do you think it’s like for me? It’s my fucking brain that looks like somebody shot pellets at it!” And then there’s people who act all inappropriately fake chummy, “You go girl! Everything’s gonna be a-ok!”-style, while at the same time physically distancing themselves from me as fast as possible. I have a very hard time feeling empathy for grown ass mature adults who can’t handle their own uncomfortableness.
A long time ago, when I was feeling semi-poetic, I have referred to myself as “the lovechild of the Rocket Man and Major Tom”, but since the stroke I’ve been mostly Major Tom, floating in my tin can, especially when I’m interacting with other people. I’ve felt fundamentally lonely for as long as I can remember, but since the stroke it’s gotten worse, and it’s not the type of loneliness you can “cure” by going shopping with friends. I also can’t shake the feeling that I have completely wasted my life and have failed in every possible way.
My life has always felt like a race I didn’t sign up for, a race in which I fell behind right from the start. Every time I would get in the vicinity of the other participants, something would happen and I would fall behind again. And at the exact moment that I, through superhuman effort, finally came close to the front runners, I fell. Everybody kept running, all busy running their own race. And at some point the race was over, everybody went home. And I’m still on the floor. Then a person walks by and says: “You’ll do better next time! Stay positive! Everything’s gonna be ok!” while refusing to acknowledge that I’m still on the floor and bleeding profusely.
Everybody moved on with their lives and I am up there floating through space, wondering every day if it had made a difference if I had died that day. And my answer to that is still “No”.3