Part of me is afraid to get better, because part of me is afraid that I won’t be able to write about my experience if I get better.

As long as it’s still painful, I will be able to write about that pain, but as I get better and heal, I’m afraid I’ll forget the pain, and not be able to write about it.

I’m afraid that the father and father I get away from the experience, the less and less I’ll be able to write about it, but I can’t write about it very often.

To put myself back there, see the sights, hear the noises and feel the pain isn’t always that hard, because it happens on it’s own sometimes.

But… To put myself back there, write about it, and really get into it, needs to be done when nobody’s home, and our house is full of family that both live here and don’t live here, with people dropping by both expectantly and unexpectantly.

I love my family, and I want them to drop by as often as they wish. I kinda hope their broken shower never gets fixed, and they always have to come over to our house to shower, but constant busyness in our house diminishes my space and alone time to write as often as I wish.

And that makes me afraid that I will have to choose between healing and forever pain.

I want to write the storey.

As soon as I awoke from sedation I wanted to write it, because knew that not that many people knew about the ICU. The nurses were talking about another viral challenge that children and teens were doing that causes ICU admissions in some of them.

One of them asked “Don’t they know it could put them here?”, but that’s just the problem: even if they are told that, they don’t know what the ICU is, or what it’s like to be that sick.

All they know is what they see in TV, the movies and books. They see both Liz McDonald and Leanne Battersby from Coronation Street, getting run over by cars, having everybody visit while they are in the hospital and then a few weeks later being back on the street, without any problems. Seemingly everybody forgets they even had a problem.

It doesn’t matter what TV show, movie of book it is the story is all the same: some character ends up in the ICU, family close around them, drama is high, and then they are out, and that’s the end.

But it’s not the end. The pain of the ICU lasts so much longer.

They don’t see the pain or the lasting damage.

They see a chance to miss school for a few days or weeks, and then instant healing, followed by life going on the way it always did.

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I read a very good article written by an ICU doctor, who said nobody understands the work he does.

Truthfully I don’t either, because I’m not a doctor of any kind, but what I do know, is I am so glad that somebody was there to save me when I needed saving.

I thought that somebody was trying to suffocate me, but I’m glad somebody was there.

Thank you. Very very much, to all the ICU doctor’s, nurses and staff out there who do what you do, even though you are misunderstood.

You know you’re story, but you don’t know mine, and that is another reason I want to write this.

I knew you didn’t know what it was like to be under sedation, and I knew I had to tell you, if I wanted to make the ICU experience of the people who came after me, better than my experience was, and I knew having previously written (unpublished) novels, that I could do it.

Nobody can help or fix, problems they don’t know about. I want the emotional problems sedation causes to be recognized and dealt will, but in order for that to happen, I need to tell you what those problems are.

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I did not know that ICU staff are misunderstood as well, until I read that previously mentioned article.

After reading it, I realize that I can also express what the ICU is like, and make the ICU staff and environment more understood as well.

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I want to do this. I want to tell my story. I want to make things better. But I’m afraid that as I get better, I’ll be less and less able to do it, because I will remember less and less, and be less and less able to put myself back there, and describe what it’s like.

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Or will I?

I have always kept a diary. Because I knew I wanted to do this, I wrote everything down in my diary. Every experience or memory, I wrote down as it happened. I asked for scrap paper from the nurse, and wrote down my experiences of sedation.

I wrote my emotions, my actions and my thoughts.

But I wrote it down, out of order, and I’m kinda stuck trying to figure out what order to put everything in, and how to write it all out.

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So for now… I don’t know when my next chapter blog post will be, and I don’t know when I’ll get unstuck, but please know, I am trying, and you will get another chaptered blog post soon. I just don’t know when.

Just don’t give up on my, quit following me, or quit being interested, before I work it all out?

I just finished watching coronation street. On it, Fiz, Evelyn and Hope try to do a math problem about making toffe apples for charity.

Before I went to the ICU, I would have been excited to do the math problem. I would have paused the show (I watch it on an app), written it all down and figured it out, before continuing with the show.

Or I would have tried to do it in my head, but with Evelyn going on about toffee apples not being healthy, and demanding to know what charity the money was for, and with the question being asked at the very end all of the numbers, I would probably have been distracted enough that I would have had to write it all down.

But now… I didn’t even try. I just let the numbers fly past me, while I felt the pain of thinking I probably couldn’t do it so why try.

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And why does that matter and why should you care?

Because it matters to me. Because I have lost something that gave me great joy at times, and relaxation at other times. Because a patient has lost not only cognition but a huge part of her life.

If a person, who couldn’t do math at all before the ICU, found they couldn’t count after the ICU, everybody would rush to help.

But because I had an extraordinary ability before being in the ICU, people think losing it to become “normal” is fine.

But is it? Does that mean that only people with average abilities should access to medical attention to restore their functioning?

Does that work for athletes too?

Shortly after I got out of the ICU, an Olympic athlete, who has a horrible accident, won an Olympic medal. He was lauded and applauded. But what the reporters didn’t show was all the rehabilitation he got and the sports injury doctors that surrounded him as he got better.

Me. My ability has never been understood, and in some cases ridiculed. It can’t be seen or demonstrated in the on TV. It’s something I hide from all but my closest family members and professors, because people ridiculed me when they found out I liked math. “Eew. How could you like math?” They would ask, while looking around before other’s laughed.

I learned to get a wrong answer on every test and assignment, because if I didn’t I was accused of cheating.

Teacher’s told me I was wrong, when I knew it was them who was teaching the math wrong, and when I got to university I was validated. The way they taught it was wrong, and many math professors disagree with the mathematics curriculum.

Because my ability, isn’t lauded, celebrated, put on TV, and because people who have my ability don’t become celebrities, and get fan letters, my ability doesn’t matter, and when I lost it, nobody cared.

Those really stupid cognition tests they give at the ICU bedside do not detect problems with cognition, when your cognition didn’t start out the same as everybody else’s.

When I told my doctor, that I hadn’t gained my math ability yet, he said “so not that many people had that ability in the first place”, and I don’t think he believed I was as good as I said I was.

In fact, you, who are reading this now, there are probably some of you who don’t believe it.

It is not fair, that I never got any help regaining my abilities. And it’s not fair that out there, there are people recovering from being in the ICU right now, that arn’t getting help.

Why should an Olympic athlete, get all of the help available, to get him into the olympics only 10 months after he had his accident, and I get nothing?

It’s not because he paid for it and I didn’t. He’s from a county with socialized medicine. So am I. We both paid nothing.

It’s because people understand sport, they watch it, participate and enjoy it.

But math ability… People don’t believe it, or worse make fun of it.

And that’s not fair.

Please if you are in a position to fix this flaw in the system, do it. I deserve medical treatment just as much as an athlete does.

Note: This was written 6 hours after I posted Chapter 3 of my ICU experience. I’m posting it now, several weeks after that post, and then I’m going to add to it.

It’s now been 6 hours since I posted Chapter 3 of my ICU experience.

I started it last week, and finished it today. Emotionally it was one of the hardest things I have ever written. When I was done my chest physically hurt, my heart was beating so fast I could feel it beating, and I was completely exhausted. I even found it hard to talk full sentences without running out of breath.

Experiencing it, and the things you have and will read in other chapters, was also very hard.

When I write anything (fiction, this blog, ect.), that portrays emotion, I try to make the reader feel the emotion. To do that, I have to feel and remember the emotion. In this case it’s really not that hard to do, because I think about it everyday. The flashbacks are getting better, but in the beginning I went right back to being under sedation and felt, and experienced what I did then.

I think one reason this particular part of my sedation story is so hard to express, is because in this part I was exactly what I was not. My sense of self was turned upside down. I like to think of myself as a good and compassionate person. Instead I was so horrible that an indefinite coma was suggested to protect other people.

It’s the reversal of self, and the idea that I am so horrible that the world needs protection from me. That’s what the nightmare was.

That is why it hurt so much, because I was thinking I was somebody I never want to be.

My fear (it lasted more than a year), that the sedation revealed to me what I really am, a racist and evil person, isn’t true. I’m not racist. I’m not evil. I’m not wrong in who I am.

Sedation is really different. It’s unlike anything else I’ve experienced. It causes all sense of time to disappear. I saw my brother when he was little, but his nephew also existed. My brother didn’t have a child when he was 10, although he does now.

It also caused my sense of self to be questioned.

Under sedation a racist man, might think he is a black female, or is married to a black female. To him that would be a nightmare.

When I look at it that way, it’s nice to know I’m not racist. If I was, that wouldn’t have been my nightmare.

And maybe that’s the lesson here – for me anyway. I’m not the horrible person, sedation made me fear I was.

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Note: From here to the end, was written today.

I sit here, gathering courage to write the next part of the story.

Because I am alone in the house (something that happens very seldom), I will have the time to dive back into my sedation memories uninterrupted.

I have felt an urgency to write all of this from the very beginning. I am afraid that as I heal from my experiences I will also forget, and if I forget I will not be able to write it. Each time I write I feel the pain of before, and although it’s not comfortable I need to do it, because I need to explain all this before I forget.

I live in this limbo of wanting to heal, and wanting not to heal. If I’m still broken, I can write about being broken.

With that in mind, I will begin to write Chapter 4.