Tracking my illness

Sunday 4.8.2019

I’m not scared of dying.

That’s the first thing I write on my list of the things to tell my nurse. It’s also one of the reasons they should have sent me to the therapist a long time ago.

I haven’t feared death for a long time. Three years ago when no one knew what was wrong with me. When a doctor after doctor told me that they couldn’t help me. You learn to accept the worst-case scenario. I may not live to be over 25. I may never write the books I have dreamed of. Never have my first kiss. Never see all the wonders of the world.

Maybe that’s the reason why last autumn it was so easy for me to accept it for the second time.

I may die at any moment but there’s nothing I can do to help it. I’m not scared. If I die then I die and that’s it. If someone crashes to my car, I cut my arm with a knife or there’s some kind of catastrophe, it’s deadly. My life hasn’t been like others’ for a long time. When something happens my body dies alone. Calling help or going to hospital won’t be possible and I will just die.

Because I don’t fear dying but I fear dying in hospital.

The memories of that sunny day in August haunt me in my dreams. I wake up in the blue hospital bed covered by a baby blue blanket. Dark blue curtains cover the bed from the emergency room. My bed is the last in its row.

I sit up only to see the doctor standing at the end of my bed. Her mouth curves to something seeming like a smile when our eyes meet. She says something but I can never exactly recall what. My answer never comes.

My lungs stop working. I can’t breathe. First my legs don’t work, then hands, then fingers, in the end my whole body is locked down. I scream but no sound comes out of my mouth. My eyes won’t stay open and all I can see is hues of blue through tears.

The doctor talks but all my energy is used to trying to get her to help me. It feels like I’m going to die. My body has stopped working and in second there won’t be enough oxygen for my brain.

“I have other patient and don’t have time for this.”

The words I can recall from word to word. She walks away. And I’m left alone dying to the last bed of the emergency room. In my dreams, no one comes. It takes forever before I wake up in my own bed gasping for air me in the past needed so badly.

But these nightmares are the easiest. It’s a story from the past and I already know the ending. Someone returns to me – the doctor or maybe a nurse. They help me to call my mom. It feels like a forever but then my mom is there and I know I won’t die alone. And now a year later it’s easy to say that my body wasn’t even dying. No, it was just a panic attack.

Those nights I survive but then there’s the other dreams. The ones about future I can’t just hide under my bed after waking up.

16.7.2019

Tuesday

This weekend was busy. I spent some time in Helsinki. Saw the new Spider-Man movie with my cousin S. We fought over does Spider-Man have web naturally or has he made web-shooters himself. Both of us were correct. I grew up reading the comics, she grew up watching the first movies. Kind of silly, because I’m the younger one of us.

Sunday went by doing nothing.

On Monday we had planned a summer day trip. My sister was sick and couldn’t come – she kept coughing through the night. So, we left 9 am with my mum and cousin R. Too early to be alive. Drove a few hours having conversations about everything and nothing at the same time. I live and also die for these moments. It’s like walking on a thin rope between hurting and having fun.

My family is kind of dysfunctional.

We talked about how my uncle had left a plastic container for my grandpa to store used needles. My grandpa is a retired veterinarian who still seems to have too many returning customers for anyone’s sake. My mum has done this thing several times – told my grandpa to put the needles to somewhere save right after giving a dog or cat their vaccine. Does he do it? Never…

So, before we left for our summer trip we had a good laugh (and inner cry) with my mum. The plastic container and message written using BIG lettering my uncle left for grandpa were still on the table of his clinic. The issue? There were used needles around the container but none in it.

Maybe now you understand how I grew up being the most passive-aggressive person ever…

But now back to my travel story!

We met my other cousin S and my aunt in idyllic Finnish small town. Visited like a million idyllic shops they had there and I ate terrible ice-cream. My nurse called just when we were visiting the most interesting shop so I had to skip it. Maybe just a good thing because I may have ended up buying too much stuff. Apparently, my nurse talked with a therapist – they don’t have anything they could help me with. So, I have just normal meeting with my nurse next week where we try to figure out what to do with

1. my fear of hospitals

2. still active mysterious disease – probably just anemia.

Our summer trip continued to this outdoor museum that I only remembered visiting before after seeing their small red granaries (is this even the correct English word for small houses where they used to store grain and other things?). The museum part had three small rooms and cost a fortune to get in. However, no regrets – my mum paid for me.

The last stop after buying strawberries from farm and ice-cream was my relatives’ summer home. I could spend my summer in an old country house… Just writing, writing, writing. By to way, I have been writing a lot lately. Not for 2 hours like I promised for Camp Nanowrimo – hadn’t been in good enough health for that – but several pages of my new notebook from Muji per day.

11.7.2019

Thursday

My sister painting in the sunlight, I’m writing something bigger than life and for a moment there’s peace in our home. I live for these moments when everything seems so simple. My cousin R visits us. She tells stories from a school where she doesn’t fit in with the younger ones. Mum brings our dog to spend the day with me but that makes writing impossible – we just lay down doing nothing for hours.

I live for these days between the bad ones. Or maybe now the bad ones are between these days almost perfect?

M-L is visiting my grandpa. We have conversations about my school starting in a month. We drink Pommac from crystal glasses. I can still remember the days when it made me almost puke, now I drink my glass without complaining. Have I been part of too many awkward gatherings in this living room trying to act like a perfect child? When did I learn to drink drinks I hate and eat foods I despise?

Grandpa seems to be proud of me starting creative writing studies. Don’t know should I be happy or not. Everyone is being so supportive but it just feels wrong. They know I want to write, but in reality, they don’t know anything. They can’t see me dreaming of books I will write someday or smiling by myself after coming up with an excellent poem. My grandpa sees me as a good creative writing teacher, mum wants me to be a journalist and my friends never put me above the freelancer status.

I want to write books, tell stories, make people feel things they otherwise wouldn’t.

My sister comes back from work. We drink wine and eat cheese. M-L asks about my sister’s life who tells stories from art school. Grandpa seems tired. Do I like these moments? I’m not sure. Having small talk comes naturally for me these days. Telling stories from my travels, talking about books I have read, asking just the right questions from others.

It’s time to go to sleep. Tomorrow my sister will drive me to the bus station. I’m going to Helsinki again. We will see the new Spider-Man with my other cousin S.