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  • Jomé Rain

Fingers Crossed, I'll Have a Brain Tumor

Why would someone in their right mind ever want to have a brain tumor?


Here's a hint : Someone in their right mind wouldn't. But someone in their wrong mind, or their mind that constantly feels incredibly wrong in reference to the seemingly sane and stable people around them, that person just might.


First, a poem - to set the mood, the intention of this writing. It's from the collection Split Tooth by the Inuit throat singer, Tanya Tagaq :


If you are living in silence

With violence in your bones

Sorrow in your marrow

Blood running cold

Heal, I beg you

Heal, I beg you

Heal, I beg you

Heal


With that said, let's dive in.


Flash back a few days, Wednesday afternoon. I start to feel strange, my legs and hands tremble, my heart beats a mile a minute, there's a pressure in my head that isn't eased by any recommended dose of painkillers. I'm confused, losing my thoughts and forgetting the simplest of things. It lasts through the day, getting progressively more disorienting. Damien is here, in the evening we watch Netflix to try and distract me from my body.


I pull out my phone make the mistake of going into a WebMD wormhole (a route I strongly recommend against, even for non depressives). I convince myself I have developed Serotonin Syndrome from the combination of my medications, a disorder which begins with muscle tremors, confusion, loss of coordination, and when left untreated, leads to seizures, unconsciousness, and death.


So, of course - I am going to die. Courtesy of my OCD, I cannot stop thinking that I am going to die. I get worse, I can't stop shaking, I can't walk without feeling like my knees will give out at any moment. Damien calls SOS Medicin, a service that offers to send a doctor for an in home examination. We wait for 2 hours, it feels like centuries. I keep nodding off but I am afraid to fall asleep, I am convinced that if I fall asleep I will never wake up. I hover, trapped in a fever dream. I tell Damien to not let me fall asleep, I tell him it's important. He does, he does this well, like everything he does.


The doctor arrives, finally. He asks questions, Damien translates what I do not understand. The doctor speaks decent English, and I speak decent French - but I like the buffer in between us, I'm disoriented, I'm terrified. After examinations and explanation, the doctor believes I am having a panic attack. He writes me a prescription for Xanax, .25 milligrams, and leaves me one to take that evening. We pay him, he leaves.


I am not put at ease. I am convinced he's not seen something. I take the Xanax and wait for it to work, it doesn't. I am still convinced that I'm dying. I oscillate between crying and hyperventilating. I have-- to put it bluntly, completely lost the plot.


Damien calls SAMU, the emergency medical line. Weird fact - unlike the US, France doesn't have one number to call in case of emergency. It is, in my opinion, quite annoying. From this article in The Local (a website for expats in France) - these are all of the numbers you need to know :

15: Medical emergency ('SAMU')

17: Police

18: Firefighters/Medical emergencies

112: EU emergency number, which will redirect you to the firefighters or the SAMU

114: For the deaf or people with hearing difficulties

115: Humanitarian emergency services ('SAMU social')

116 / 117: Doctors on call

119: Childline

36 24: Emergency doctors (SOS Medecins)


But this isn't a post about how strange France's emergency system is, this post is about a deeply rooted desire for a brain tumor.


On the phone, Damien explains my symptoms, and is instructed that the fastest thing to do would be to call a cab to the nearest emergency room, which they provide us the address for. They say they will arrange things so that I'm seen right away when we arrive, and I am.


The nurse takes my vitals, all good there. I try to explain all the things that I'm feeling, but I stumble on my words. I am then sent to a psychiatrist, who asks me questions about my recent hospital stay. I tell her, I'm not here for my head, I'm here for my body. I'm not sad, I'm sick. I need to see a doctor.


She is unconvinced. She asks me why I was hospitalised the week before, I tell her for a depressive episode. She asks me what triggered it, I say I don't know, nothing I guess. She tells me that's not normal for a 23 year old girl. All episodes come from something. I tell her again - I'm not here for my head, I'm here for my body. She sighs and sends me into a different room, where I can lay down and Damien and I can wait to see a doctor.


It's a long wait, and D falls asleep with his head on the railing of the bed/gurney. It is well past one in the morning, and I cry, because I am frustrated that I am not a 'normal' girl, a 'normal' girlfriend. I am sad that I feel sick, and sad that this is our second trip to the ER on my account in an 8 day period.


The doctor arrives and asks a few questions. He is young and kind, and he speaks English with a comforting tone. He asks some questions and tells me he'll need to do some ultrasounds, of my heart and lungs. Damien goes to get coffee and I get gelled up with the kind of lubricant they use on pregnant women, to peak at the life growing inside of them. I remember thinking it ironic, that we were checking to see if my own life inside of me was still there, still strong.


I see my heart beating for the first time, on the little monitor. He has to manoeuvre all around my chest to find it, but when he does - I can't stop looking. The thing inside me, beating strong, beating without fail. Sometimes I feel like my heart has stopped, and other times I feel like it's beating so hard that it's going to explode. I've been told that's a symptom of anxiety, but in the moment, it always feels like I'm dying.


My heart is okay, so we move on to the lungs. The doctor is nice, he explains what's on the screen. It all looks the same to me, but his trained eyes are searching for fluid build up around them. That would be a bad sign, but there isn't any. Everything he was worried about seems to be all good, and he tells me I'm okay to go home. I start to panic.


What about the pressure in my head? Surely that is something, these headaches, the confusion. The trembling in my knees. Doesn't he want to check my brain? Because now, instantly, I am convinced that I have a massive brain tumor, bulbous, pressing against my temples. From his analysis, he doubts it. He says it's likely a side effect from the anti-depressants and other medications, that once my body gets used to them, the symptoms should clear up on their own.


So we're good to go home, and I should be relieved. I should be happy to have been reassured that my body is in top form, but I'm not. In a way, I'm disappointed.


My mood grows sombre, and when the doctor leaves I tell Damien that I will book an appointment with another doctor tomorrow, to ask for a prescription for a brain scan. After that, I am silent. I am silent on the drive home. Silent when we arrive to our place, too. Finally, I say I'm going to do the dishes, and I do them in silence.


When I finish, Damien asks, "Are you mad at me?"


It's easy to see how he could have come to the conclusion, as I haven't said a word to him since we left the hospital. But it's not that I'm angry with him and shutting him out, it's that I am furious with myself and shutting myself in. I tell him that - no, I'm just angry with myself. He asks me why, and I am faced with the paradox of anxiety, the vicious circle of obsessive thoughts.


I realise as I try to explain to him, that in a way, I wanted to be sick. I wanted there to be something physically wrong with me, I wanted to go in and have them tell me I was dying, but at least it could explain my troubled mind, my constant sadness, sometimes lurking in the corner, often standing center stage.


I wanted there to be a physical, tangible reason for what I was experiencing. I felt, somewhat subconsciously, that it would be easier to deal with. Easier to explain, to my friends, to my boss. "Sorry, I can't today. I have a brain tumor / my kidneys are failing / I have a bad heart."


Instead it's always so meta, so trivial in my eyes. I feel weak, and I want an explanation for that weakness that isn't the fault of my own mind. I am angry, and irrational. I think that if I had cancer people would know what to make of me, know what to say to me. Instead I have mood swings, days I can't leave the house, thoughts that trap me in cycles - thoughts that tell me I am awful, a vicious person, a terrible friend, a horrible lover.


I think I am angry because my illness isn't one that can be seen on an ultrasound or cut out with a scalpel, and sometimes I desperately wish that it were. I think of watching House as a child, and obsessing over the way this brilliant diagnostician who always managed to discover the patient's troubles at the last minute. Scurvy, malaria, acute lymphoblastic leukemia!


I loved this show because in the end, even the strangest of cases were wrapped up with a neat bow. There was always an answer, a treatment, a solution. Most patients recovered, went home to their families, and likely looked back at that one strange time they nearly died before Dr. House saved them in the nick of time.


But for me, like many people with a lieu of mental health disorders, there is no Dr. House. There is inner work, there is therapy, there are tests and trials of medications that may make you feel better or make you want to off yourself even more. And sometimes that seems overwhelming, and sometimes it seems manageable, on Wednesday night it seemed like the end of the world.


So that's what I told Damien, a conversation that lasted until the sun came up. He listened, he comforted me, he tried to understand me as best he could. That's the thing about real life love, something that's different from in the movies, something I've been learning more and more. It's not about meeting a person who understands you completely on first contact or who has experienced all the same things. The truest love I've been shown has been the desire and dedication to try to understand. To acknowledge my feelings, to hold space for them, even when they are not immediately understood. So like always, with some perspective (as it's Saturday now) - I am a very, very lucky girl.


There's one thing I'd like to share with you, on a parting note - something Damien did for me that helped me immensely that night once we were home.


I was crying, because I felt like a burden, I felt like I didn't deserve to be loved. I felt like I was holding everyone around me hostage, and I was listening to the thoughts, telling me I was awful, an awful human being without possibility of recovering.


Damien held me then, and he told me over and over again that I deserve to be loved. He reminded me of all of my good qualities, the things I forget because my brain doesn't like to look at me in the way that my loved ones see me. He listed trait after trait, action after action, so much evidence that he became louder than the voices in my head who were trying so desparately to disprove him. He told me that I needed to remember who I am, what I am. He told me that when I forget, remember that I am love, like the letter I wrote for him when I was in the hospital the last week.


He went to retrieve it, and he sat next to me and read it, he read my own words back to me and I cried and cried, and I was grateful, and I felt small, and loved, and seen.


Something shifted that evening, because while I'm not cured (obviously) - the nasty thoughts haven't been as loud since that moment. They're still here, they're still chatty, but I have a strong memory now that I can recall and tell them no.


This has really been more of a ramble than a text with any point, but that's where my mind is at today. It was a bit difficult to write this, but I have some new posts planned next week that will be a little less heavy. I just want to be honest, scars and all. I think we all deserve that 🖤


By the way, I'm gonna copy in the letter D read to me - as a reminder for myself in case it's ever lost, and also because it's quite sweet. He was right about that.


Love love love, now and always,


Jomé






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