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.

Letters to Virginia Woolf

Dear Virginia Woolf,

You don’t know who I am. And two months ago I didn’t know you either. We are just two writers almost a century apart. 54 years, 2 months, 13 days – that’s how long there was between us. You killed yourself after forever of struggling in March 1941, I was born not knowing all the hardships I would face in June 1995.

Mrs. Woolf or can I call you Virginia? Both of us share many similar traits. Writers, issues with mental health, seeing the world from a different perspective. But you will never know this because you’re dead. And even I don’t yet know how deep our bond truly goes.

1915-1918 those are the years from your diaries I have read so far. But it feels like I should have started from somewhere far before.

It was a sunny day in June when I first saw your diaries in a bookstore. All 5 of them were in the discount aisle. The back cover told me you were a writer but that’s all. I had never heard of you and dead people have never been an interest of mine. Still, something in these books screamed for me. I took the first one and continued my stroll around the store. It’s just a few euros, that’s what I thought.

When I finally got to the counter something didn’t feel right. Those 4 remaining diaries kept bugging me. Call it intuition, destiny or my addiction to books but my mind kept telling me to take all five of your diaries home. And so I did.

Next thing I knew, I couldn’t stop reading your first entries in 1915. Maybe I saw myself in you or you in myself or the text just felt so real. Virginia Woolf, you interest me.

It took only a week from me to know that this was now a thing. You and me had become a thing so I had to find as much information about you as possible. Not my proudest moment when one night I ordered your early diary, essay collections and letter collections to go together with the diaries already in my bookshelf. 16 books of you all together. 16 books full of text written by you.

Reading someone’s writing is the closest way to be with them. 54 years, 2 months, 13 days between us but I can feel you in my bones.

24.7.2019

Wednesday

I try to write a message to B but my fingers shake too much for the characters go into the correct order. It’s almost 30 Celsius outside and still, my body sweats for a totally different reason. Pure luck that I drove my car safely to the hospital. No feeling in my legs. It’s impossible to breathe.

But I don’t cry uncontrollably. Every symptom is a little easier than last time I was here – sitting in my car telling my own mind how I’m not going to die from seeing my nurse.

You’re okay. You won’t die. Everything is okay. It’s just your mind playing tricks.

It takes me several tries to open my car door. Dad of three kids in a close-by car looks me oddly but doesn’t ask. I have learned that most people don’t. When I walk to the door of the hospital it opens automatically. No time for turning back. No time for making myself believe in the crazy irrational fears.

When I sit to the seat in front of the registration office it’s not only my fingers shaking. Fingers, arms, upper body, legs, feet, teeth. The nurse checking me in doesn’t mention it. Maybe my file already warns them to not approach. I can’t show my ID to the scanner because it keeps shaking and my voice doesn’t carry to the other side of the class booth.

But I don’t cry. Not this time.

Two older ladies sit on the other side of the waiting room. But I only hear their voices. My eyes are closed for my own protection. Is he okay? They wonder. I would laugh and maybe even tell them the truth if my mind wasn’t guarded by my insecurities. Even opening my mouth feels like a sentence to death.

The nurse calls my name. This is our second meeting but I still can’t look her in the eyes. She takes me to her room and my eyes keep wandering in the corners of the corridor. Counting the tiles calms me down a little. She even mentions that I’m a lot calmer than last time but oh if she just could see inside my mind.

We talk for a while about my anemia. How have you been? Tired or full of energy? Are there fewer bad days? How are you feeling? I count the bottles on her counter, keep trying to remember the lyrics to that one song I used to love. Anything but remembering where I am.

Then we go to the subject that really took me back here.

But I don’t cry.

I can tell her about the last autumn when I laid for hours in the ER just crying, crying, crying. She tells me they had the wrong idea of why I was there. Just a mess up that ended up me alone carrying the mess. She says that happens. I can’t tell her yet what really happened but it doesn’t mean I can get myself out of the memories.

There may be a few tears in my eyes but who counts?

No, I don’t have panic anywhere else. Just here. In the hospital.

Yes, I may seem fine now. It was easier to meet you. I was even able to meet the doctor a month ago. But ER. If something ever happens to me, I will die. Car crash, poisoning, deep wound, broken leg. I will die. I will die rather than ever return there.

The next part I can’t even write. She asked me if I have had bad experiences with doctors before.

I cry. Ugly weeping not being able to breath kind of crying.

She waits for me quietly when I close my eyes trying to disappear. It may take a minute or ten. I’m not really there so it’s hard to say. She doesn’t ask again but I take myself out of my body to tell the story through sniffles. After the story, she once again mentions how it’s sometimes like that even if it sucks.

I don’t ask her the question lingering in my mind – How would you continue after feeling like you’re going to die but no one is helping you? What would you do if every doctor you met told you that “sorry we can’t help you here”? Would you cope after losing the trust to those people who are the ones supposed to help you?

A week ago she called telling me that the therapist didn’t think she would have anything to give for me. But now my nurse has a paper with a panic questionnaire. What symptoms do you have?

  • dizziness
  • numbness in hands and fingers
  • sweating
  • chest pain
  • difficulties to breath
  • feeling like I’m going to go crazy
  • shaking uncontrollably
  • irrational fear of dying
  • crying for hours without being able to stop

We will work on these one by one. So she says. But am I brave enough to believe anymore?

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.

9.7.2019

Tuesday

I was feeling so well and now everything is falling apart once again.

When I started this diary, I did it because I felt like everything was going so well. After so long my days felt fine almost like normal. Never wanted to write every post about hurting and hurting again, not getting out of bed for days.

I hope I could tell you happy tales. Speak about the stupid things I have done. Tell you about the wedding I attended this weekend or share the small talks I have with my sister after she returns from work. There are so many things to do, to achieve, to try. Why can’t I just go on and write about those?

Why once again I’m bedbound on the edge of dropping down?

My school starts in a month. What if my health doesn’t get better before that? I got time for a brain scan and it scares me to the end. On the other hand, I hope they find something. At least they could do something. But who really wants to be sick?

Maybe this endless tiredness and my body not working is just because of the long weekend full of stress. Or so I hope. I have already made plans for the weekend – will go to see the new Spider-Man with my cousin in Helsinki. On Monday we do a family trip somewhere. Then we go to see pandas with my family and cousins. After that, it’s my grandpa’s book release party. And then only a few weeks before school starts.

Oh god, let me be well to do all that like a normal human being. Is that too much to ask?

2.7.2019

Tuesday

It’s 9 PM and I’m drinking some flowery tea while writing this. I made a promise to write 2 hours every day in July (1 hour in English and 1 hour in Finnish). Did that yesterday like my overly emotional diary entry gave away. However, today there hasn’t been enough time.

We went shopping with my mum and sister – with them time flies. Afterward, my sister made a salad while I cooked halloumi and my grandpa made salmon. Oh, how I have missed these simple days when we just spend time as a family. I put on Spider-Man: Into The Spider-Verse and my sister stayed to watch it too.

The movie wasn’t as great as when I saw it in movies but still, the style is so aesthetically pleasing that it’s hard to explain. The character of Gwen is close to the perfect female hero in my opinion. Chic, badass, snarky, and still vulnerable. Of course, being beautiful is just plus. Can I call a cartoon character beautiful?

I’m a devoted reader but comic books have always been my guilty pleasure. As a teen, I read every Spider-Man comic book from our library. He’s one of those characters I identify as. Mostly because of the “Parker luck”.

If comics aren’t your cup of tea, don’t come at me. I’m ready to fight you about the matter of if comics are important part of literature. Some stories can only be told in visual form.

From comics we can easily transform to today’s second subject. I started a project!

A few weeks ago I bought a stylus pen for iPad online. It came yesterday. Basically, a stylus is just like a normal pen and you can draw or write with it to touch screen. Why I need this pen you may ask? Or maybe not because I haven’t yet shared with you my drawing skills. I can’t even draw a convincing stick figure. So where do I need drawing pen?

  1. I want to plan novels, make idea maps, etc. using my iPad. I hate doing that on paper but it feels stupid just writing things down as a list.
  2. I want to learn how to draw.

I already told you the truth – I can’t draw to save myself. In our family, my sister has always been the artistic one who can draw, paint, sculpt and you name it. I’m the writer of the family. My parents put me to art school for years as a kid and teen but it never took me anywhere.

I want to draw. And I don’t know why.

Maybe it’s because my personality is build around being stubborn and always proving everyone else wrong.

I was the last one to learn reading and writing in my class, now I work as a writer. My English teacher kept laughing at my language skills, now I work as part-time translator. No one believed that this shy book nerd would have the balls to travel all around the world, guess what I did!

It has taken time and effort but my family and friends believe in my writing skills. They know I can do this. My parents even drive me towards studying creative writing instead of starting a business around my freelancing. Everyone roots for me but it doesn’t sit well with my personality. Surprise. Maybe my soul wants to surprise everyone, do something no one would expect. And the best way to make that happen is to do something I’m known to be bad at.

Is that good reason to start drawing?

There’s a second reason – my stories are often visual. Kind of crazy because my mind isn’t, I don’t see thoughts as normal people do. I can’t visualize. But when I plot stories it goes something like this: “You can see his foot first running on a dark alley. No one behind him but the agony in his eyes tell everything. And then there are second feet next to his, running. Girl shouting that they have to find way away. The boy looks at him not knowing what to do.”

Comic book – I love them. If I could draw, it would be a perfect outlet for my creativity. And that’s my second reason. Learning to draw is a change for me to tell stories even more effectively. Can I achieve what I want? Who knows…

There’s no person more stubborn than me and even if it takes years, I will fight for my dreams.

1.7.2019

Monday

Some days are impossible like yesterday. My mind is a blank paper – thoughts hidden in heavy mist. Other days feel almost normal. Today. I can live for the first time in three years. My mind is sharp and body not in pain. And I see it in the smallest things.

Today I wrote for two hours. I wrote for two hours in who knows how long time. It has been years. I put on a timer and wrote, wrote, wrote. And then the timer went off, my whole body collapsed, I couldn’t stop crying.

I couldn’t stop crying.

World doesn’t have greater agony than not being able to do what you love the most. Even worse if the reason is your own body. I have always loved writing and then out of nowhere I couldn’t anymore. My attention span would last for 15 minutes most on the good days and those good days were rare. And if my attention didn’t get the best of me, my hands did. I would write for a few minutes only to lose all the strength from my fingers. In case I decided to be stubborn that didn’t matter too much. Not at first. After every word my hands would start shaking and shaking and shaking more.

There were a million stories I wanted to tell. Writing had always been my escape from the darkest moments of my life. But when I needed it the most I couldn’t write.

Today I wrote for two hours and then I cried.

I laid on my floor open laptop marking a few thousand words written. My heart was beating too fast and body shaking from the shock.

My tears weren’t happy nor sad. I didn’t cry for the pure happiness of finally doing what I love nor mourning for the lost years of my youth. My tears weren’t for the life I can finally have – studying writing and maybe making my own book after that. Nor were my tears for the life I may have had if this had never started – being young digital nomad traveling all around the world while writing my book as side project.

I was crying of pure surprise.

I started crying because I hadn’t even noticed the time flying by. Two hours had just vanished to thin air leaving behind words I thought had sounded quite good. But more than anything my tears came because I had just used two hours writing and my body felt okay.

After two hours, I didn’t feel pain, my limbs weren’t sore and most of all I felt normal. I felt like any 24 years old writer after a few hours writing session.

Only a few weeks ago I wouldn’t have believed for this to be possible ever again. My illness had driven over my hope with a truck. I had made myself believe that not writing the novel I had always dreamed of would be okay. I was satisfied with poems and short stories. And that’s why I cried.

Because maybe I can have a real life and try to achieve my dreams like everyone else.