It’s august 28th 2023 and I’m reading a letter from the MRI clinic I recently went to, and the medical German it’s written in is really difficult to understand and I’m in the middle of a workout so I’ll translate it later.
I return to my workout but then I stop and go back to the letter lying on the desk, because if this is a scan of my brain, then why does it keep saying “3 cm” and what the hell is a “Meningiom”?
I’m in the anaesthesia room where I fell into a deep sleep just a few minutes ago, but the clock says it’s nighttime several hours later and I’m in terrible pain.
The pain medication isn’t working so they try different things, but the pain isn’t my main concern right now.
I ask the anaesthesiologist “how did it go? Were they able to keep my skull?” and she says everything went fine and my skull is still there.
They skip the recovery room I woke up in last time and instead take me back to my room, the same room I was in for the previous surgery and same room I’ll be in for the next.
My partner is there and, with as much excitement as I can muster up in my current state, I tell him it went well and that I still have my skull and he looks somber and confused and he says “that’s not what the surgeon told me”.
It’s April 1st 2022 and I’m on the train to the airport to go pick up a guy I met online but I’m not nervous.
I’ve spent two years alone and celibate and decided that I like that much better than settling, but I’ve known from the moment we started talking that this person is special and that I’m safe, and that together we could build something truly remarkable, if we decided to do so.
We are at different exits and he texts me “would it be cute it we walked towards each other and met in the middle?”
He walks past me and I get a good look. It’s only his second time ever flying. He looks so nerdy.
I text him “turn around”.
It’s four months later and we’re sitting on his couch in his bright, pre-furnished home in Eindhoven and he asks me “should I be looking for jobs in Berlin?” and I say “yes”.
On November 19th a car pulls up in my driveway and puts an end to seven months of long distance commuting between Germany and the Netherlands, and I am no longer living alone.
It’s the third morning after the first brain surgery and the physiotherapist is standing at the foot of my hospital bed, looking intensely at my left foot. Specifically my toes, and she tells one of them, the middle one, to move.
“Move! Just a little twitch, come on! You can do it!” and I’m staring so hard at the toe I’m almost squinting. I’m willing it to move, just like when I was 11 years old and had just come home from the movie theater where we’d seen a movie about a boy with a magical flying carpet and I run inside the house and focus all of my energy and willpower on making a small rug in the living room take off.
I’m willing the dead foot to do something, anything, both because I want to walk again, but also I want to make her, the physiotherapist, say “good job!” and get off my back.
The toe, however, much like the rug, stubbornly refuses my commands.
It’s December 4th 2023 and I write in a notepad entry, that “people would reach out more often if I had a cold or a stomach flu, but at this point in my life, I try not to take things too personally.
It’s not about me, but about how my condition makes them feel.
Unsafe. Powerless. Mortal.
Reaching out seems to be a one time event, done, checked off the list, rather than the regular check-in’s I really need.
At the same time, I don’t know what to say to them either.
How to pretend to be as strong as they want me to be. How to care about the mundane.
How to just get back to normal as soon as possible to make everyone feel less uncomfortable around me.
But I’m not normal and I won’t be for a long time, and I’m not a good liar.
So I let the connections fade, allow people to stop caring, to stop reaching out. I mostly give up on trying to teach them how to deal with really sick friends.
How to face the truth of this fragile existence.
The truth being, that if this can happen to me, it can happen to them too. To anyone.
I let them fade because isolation feels more familiar and easier than trying to maintain connections that don’t run as deep as I thought they did”.
The dehumanization starts early at the hospital.
Every morning on weekdays they turn on the lights abruptly and 12 or so people enter the room and start discussing a case. A person, that is, either me, or one of the other unfortunately people in the small room with me.
They don’t smile, say a simple “good morning” or address anyone directly. They look either through you, or right above you, or at the doctor giving the case resume. If you speak to them, they look confused and almost offended.
That morning in November 2023 I’m already awake before they enter.
I always am, because I don’t sleep.
That morning, one of the department heads tell me I can go home that day.
“You can do everything normally, you can do sports.
You don’t have to wear a helmet”.
They all laugh at that one and then they leave.
It’s April 2024 and I cry all the time.
My OCD is running rampant, but words like “depression” and “survival mode” get thrown around so often, that they now seem banal and insufficient, and leave me with no vocabulary to describe what I’m going through.
The medication I take to prevent seizures likely has something to do with how I’m feeling, just one of the fun side effects, but mostly, I’ve just been defeated. Instead of making me stronger, like it’s supposed to, adversity has won, and none of the tools I’ve used to pull myself out of severe depression in the past, work this time.
I’m not suicidal, I just think about death and dying a lot.
The only thing I look forward to is sleep.
My partner is with me almost the entire time.
Through endless waiting in endless waiting rooms.
Six hours for the anaesthesiologist.
Five hours for surgery.
Three hours for an emergency CT where they forget that I’m there, even though he reminds them three times, while I have a geyser of puss and blood spurting out of my head, as I lean to the side on a hard plastic chair, at an angle that makes the menacing creaking and gargling sounds inside my skull quiet down a little bit.
Six hours for surgery.
Nine hours for some discharge papers.
Seven hours for me to come back from a surgery they told him would take two, no word as to whether I’m dead or alive.
So many early morning cab rides through the city.
He rises to the occasion, but more importantly, he loves me.
Through paralysis and wounds and things that are simply too gory to share, he calls me beautiful every day, he loves me even harder than before and that’s saying a lot because he’s an extraordinarily loving person. I am always acutely aware of how lucky I am, even when my world is falling apart.
The second time in the hospital is different.
Not just for me personally, the whole place is different.
The mood, the staff, the treatment. The building itself looks the same, but I have my doubts.
I know a parallel universe when I see one.
One morning, two nurses come in with their cart to measure our vitals.
Blood pressure, blood oxygen, temperature.
They stand by the cart and talk, and the older nurse with blonde hair tells her colleague that someone died. I hear it clearly. I think it’s a patient and I get the feeling that it wasn’t supposed to happen.
The other nurse looks shocked. He doesn’t speak English and he isn’t very nice to me, but at least I know him from before. They continue to talk and the first nurse does the sign of the cross and says that Frau something or other is in heaven now.
I wonder if that conversation could have maybe waited.
The staff becomes increasingly stressed and inept, and sometimes even abusive, after this, and I start to fear for my safety in more ways than one.
It’s July 29th 2024 and we’re finally on holiday. A much needed one. Maybe the most needed.
We’ve only been away from Berlin for one full day when we learn there’s been a break-in at home, in our apartment.
My partner lies at first, to protect me, but I find out. The sense of betrayal hits me almost as hard as the break-in. I didn’t think it was even possible for him to lie to me, so my whole reality is now in question.
I speak to the police and I see a video of our home taken by our neighbor. Our things scattered everywhere.
I see the small drawers that once held my jewelry lying open on the floor, and next to them, the tiny bag with my dogs ashes. His urn, with his name tag, bandanas, collar, and the rose they gave us at the crematorium, turned inside out in search of valuables.
I break down. It’s finally all too much. I’m almost catatonic and I sit outside in the yard crying for a whole day.
My period, as punctual as the notification I get from the app I use to track it, doesn’t come that week.
It’s December 2023 and for the first time since I started daily physical rehabilitation, I’ve decided to take the train home from the rehab center by myself, instead of the excruciatingly long and chaotic patient transport that usually picks me up every morning, and drops me and several other people off at night.
Friedrichsstraße station is bustling with people going in all directions in a hurry, as always, but instead of going with the flow, while braced for light impact, like I normally would, I’m terrified. I have a big hole in my skull and my left leg still isn’t as stable as it was before, so any impact puts me in danger, and everything from exiting the train to walking down stairs is done is done in a tempo that doesn’t fit the crowds, and even though I’ve always had disabilities, I’ve never been disabled like this, and although I’ve always known this, I am now experiencing first hand just how cold and scary and unwelcoming the world is for all disabled people, and how it’s actually just built for the able bodied, unappreciative few.
When I get home I make myself a small helmet to wear under my hat.
It’s November 9th 2023 and I’m in the middle bed in between a young girl from Austria and a German woman, and they talk and have visitors, but I don’t have anyone coming that day, the day after the second surgery, and I’m broken.
I could handle brain surgery. I could.
I had made my peace with the possible outcomes, including not waking up again, and while I was being rolled down to the surgical ward at the end of October, I looked out the windows and said goodbye to the trees and their falling, red leaves, I whispered how much they’d meant to me in this life, and I was almost happy.
And when I didn’t die, I was overwhelmed with gratitude, even waking up paralyzed didn’t seem so bad, because I was still there. I was still looking out at the trees. I didn’t have to leave my love. I didn’t have to break my mothers heart.
But the second surgery, and the horrors, the complications. That I couldn’t handle.
It’s November 2023 and all I do is cry.
It’s April 7th 2024 and I’m taking my first proper, longer walk since the third surgery.
The weather is nice and we’re walking through the park to the garden center, and I notice a clicking inside my head.
Like a metal barrette being snapped open and closed, with every step I take.
Loud, palpable, insistent.
I tell my partner, and I tell the neighbor who’s a neurosurgeon.
It’s in specific spots, just about where the prosthetic skull meets the real one. With every step, *click*, if I touch it, *click*.
I tell the doctors too, when I have to go back to the hospital first one time, then a second, because suture thread is sticking out of my scalp. They’re casual and ignorant.
“It’ll go away… or your brain will adjust to the sound and you won’t hear it anymore”.
What is it? They can’t say. Why can’t they say?
The clicking becomes all I can think about. It’s impossible to ignore, I have OCD, remember, impossible to live with, but I live with it, what’s the alternative?
I pray. Having completely lost touch with the spiritual part of myself, that so many people find or lean on in times of great distress, months earlier, I try to recover it nonetheless, just to beg someone, something, to take this burden away.
And they do. Unless triggered by touch, it actually goes away
I can walk again! I walk faster and faster, I feel free, and because I’ve always been a fast walker, closer to normal.
I can’t run for the bus and I can’t jump, and doing martial arts, as I have been for over a decade, is out of the question, but the change in my quality of life is still significant, and with time I stop expecting it to return. I let go.
But on July 14th, it comes back. First a quiet clicking, so quiet I think I might be imagining it, out of paranoia and fear, then louder, louder. After a few weeks it’s worse than ever, even raising my eyebrows triggers a *click* so there goes my plan of just not moving and I’ll be ok.
My compulsive thoughts run wild.
How do you live with something you can’t live with?
How do you keep from going mad?
Not a day goes by when I don’t think back to that first consultation at the hospital with regret.
I was whole back then, whole and healthy and beautiful, and I should have said “no, no thank you, I’ll get a second and then a third opinion. I’ll go somewhere else. I’ll take my chances with the tumor. It’s never bothered me none and maybe it never will”.
But they ranked third best in the world for neurosurgical departments, and I did in fact get a second opinion that said get the surgery, and… I didn’t know.
I didn’t know what they’d do to me, and what I would come out like. I was never told that there was even a slight chance I’d end up with three surgeries and a loud, bumpy, uneven, poorly installed plastic skull.
I didn’t know I’d never be whole again.
I look at pictures from before and I have to stop looking. I miss her so much and I’ll never be her again.
When I talk about this, people without 20 cm scars and prosthetic body parts say dumb shit like “we all change and change is natural” and “none of us are ever really the same” so I stop talking about it.
I wonder how the hospital could have ever ranked so high on that list, but guess it’s easy enough to be the third best something-department in the world if what’s written in your journals is mostly made up, and that part seems to be just about the one thing they’re really good at.
It’s September 2022 and a neighbor asks if I know this other neighbor who lives on the first floor, and I say “vaguely”, and would I be interested in switching apartments with her?
Her apartment is huge, bright, but she wants to downsize.
I’m preparing for my boyfriend to move into an apartment that’s exactly big enough for me, building him a small office in what’s literally a hallway closet, so I enthusiastically say yes.
I go to view it, take pictures for my partner, who’s still living in the Netherlands.
It’s stunning. We both love it.
The process takes a long time, months and months, but that’s alright, during that time we learn to live together and we enjoy the anticipation of moving into a shared home that’s new to the both of us.
On April 19th, it finally happens, after weeks of renovating our old place, of packing, and being exhausted all the time, a moving company arrives and switches our belongings for our neighbors.
When they leave, our new couch is delivered.
My partner orders sandwiches from Subway.
The apartment is just beautiful.
I only get to enjoy our magical new home for two weeks before I get a call saying that my mom is in an induced coma, being treated for a life threatening, flesh eating bacteria.
I cancel my appointments, including a tattoo appointment, an MRI scan that’s probably nothing anyway, and the first real dinner in our new home with a close friend who’s visiting from Australia, and rush to Denmark to be with her and my family. I spend the next two weeks in the hospital, sleeping on hard chairs and short couches, and that’s how the year of hell begins.
It’s August 10th 2024 and we’ve been cleaning all day. Crime scene cleaning. The crime scene is our home.
We scrub, vacuum, mop, tidy. Wipe down every surface, every treasured and casual belonging that has been touched by careless and unwelcome hands.
We burn sage and speak of security, and all the things we’ll do to ensure this doesn’t happen again.
We discuss theories and make assumptions.
We’re hurt and discouraged and disappointed.
My heart keeps breaking as I discover the absence of more and more items. Heirlooms. As priceless to me as they are worthless to anyone else.
My partner is devastated to learn that the perpetrators cut down a couple of plants we’ve been growing together.
A sweet, shared project where he’d automated the lights and ventilation, and I’d rigged up an irrigation system. It was going so well when we left and we’d looked forward to seeing how much they’d grown. The side of our greenhouse is slashed open.
I guess they couldn’t see the zippers in the dark.
I have flashes of gratitude, reminding myself that they could have decided to vandalize something else. Like my 200 other plants. My books. My art.
We hug a lot, but I don’t cry. I already did that.
It’s evening and we’re finally finished, so we go for a walk, order some food, and watch sci-fi on the couch where we’d slept the first night back, because they’d left our bedroom in too chaotic a state.
The vibes are still a bit off, but it’s our home again.
It’s April 3rd 2022 and I’m taking my boyfriend, who’s not yet my boyfriend seeing as we only met two days before, to the Turkish market by the canal.
He tells me “I have a sudden, uncontrollable urge to buy you tacky jewelry” and I’m all smiles and giggles, but I’m also used to men saying big words to me without following through, so I let it go. But when we pass a jewelry stand, he motions for me to go pick something, and I find a small brass ring with a turquoise for 6€ and he buys it for me, and I think we both know.
It’s July 31st 2024, my mom’s birthday, and I’m setting up some drinks outside of the kitchen in the warm summer weather.
The guests are arriving.
A woman who doesn’t know me very well asks how I’m doing, with my health and all.
I say I’m doing ok.
She says “just ok?” and I say yes, but ok is still a pretty big improvement.
I say “it takes a long time to heal and recover” and she says “says who?”
“Says me” I reply.
She asks if the doctors say that too, but at this point I’m done with the conversation and her, and I think I reply something along the lines of “I don’t really care what the doctors say” but I can’t be sure.
My mind, in a moment of wisdom, decides that the rest of this interaction isn’t worth filing in the permanent memory bank. Space there is limited, after all.
Later in the evening, as we’re about to retire and go to bed, and most of the guests are heading home, a friend of my parents, a kind and unique man who’s like an uncle to me, comes over to say goodbye to me, and he get’s a little sentimental and tells me the story of how he and I met.
It was down the street from where we are now, by the local inn, and I was still inside my mothers belly and isn’t that amazing, he says. And I agree, it really is, and we hug and say goodnight.
And I’d like to believe that this conversation, and the squirrel that came by to eat with us during dinner, are the moments I’ll remember from this night, if any.
We paint the kitchen pine green.
My mom comes to visit.
My partner gets a new job.
My parents both recover from serious illnesses and celebrate their birthdays. 80, 81, 82.
I build a large bookcase from used IKEA pieces.
My partners family visits from Serbia.
I work at fashion week again.
We rearrange the apartment, and then rearrange it some more.
I bake bread, and I reopen my small online shop.
Both my parents visit, my dad seeing the apartment for the first time.
We host a few dinners, and we start to plan future travels again.
We go for walks and we laugh a lot, and we spend our days together working from home and saying “I love you” more times than you’d think possible.
A poet I like said that a difficult life is no less worth living than an easy one, and I guess that’s what we have here.
That’s where I’m at.
A difficult life, yes. But a life worth living.
This was heartbreaking and terrible to read yet beautifully written and – I feel – still hopeful. It also shows again that you never know what a person goes through while posting pictures of plants and beautiful interior design. We don’t know each other and my words are meaningless in the face of all this but I am so sorry you have to go through this and I have been thinking about you often. Sending love <3
My coffee is long forgotten, and I have tears in my eyes as I’m reading this. Your writing seeps into my soul. I feel many different things. Sadness, extreme sympathy, strength, a yearning to be loved and to allow myself to be loved. A reminder, even for someone like me who’s thought about death too many times, that life is unpredictable but also beautiful and should be cherished as much as possible.
I’ve followed you on instagram for many years now and you continue to be an inspiration in so many ways. I wish you nothing but the best. May life give you abundance of love, more strength and health, and more creativity for that beautiful brain of yours.
This is heart wrenchingly beautiful and I feel such a range of emotions reading this. Cars going by, people passing, my husband’s phone conversation – everything just melted away as I submerged myself in *feeling* every sentence, slowly, purposefully, completely. Dear Flora, you have a gift for words and although I don’t know you in real life I find my heart just screaming for you, rejoicing over your relationship teeming with green flags, aching on the verge of tears for the hardships, and just enjoying the seemingly mundane such as going on walks and feeding ducks. You are truly an inspiration, even if you might not always feel like it, or even try to be. Vulnerability is beautiful and so are you.
Love,
Bim from Sweden