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.

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?