Month: January 2020

A Happy and Triumphant Accomplishment

In all the sadness, and heartache in my life right now, there is a happy and triumphant accomplishment.

I read a book.

And not just any book, but a rather large novel.

That might not seem like a huge accomplishment, but for me, right now it is.

I used to read every day. I always had a novel on the go. One year in university when I took summer session, I had to take a book back to the library before I finished it, because I kept thinking of the book while I was in class.

Because summer session goes so fast, 1 day of missed classes due to daydreaming, equals 1 week in regular session classes. I realized I just couldn’t keep daydreaming about fictional characters if I was going to pass the class.

I passed. With an A.

Unfortunately I forgot the author of the book, and couldn’t take the book out again when regular session resumed. I’ve always wondered but never knew what the end of the book was.

Before I was in the ICU, I read a variety of genres (everything from comics and graphic novels, through many and various forms of fiction, and into non-fiction, like Elisabeth Kubler Ross’s books about dying).

I like to experience and see the world through other people’s eyes. I like to learn about almost everything. (Not bugs… I found that out by experience when an entomology student tried to explain all the intricacies of the common house fly (including the reproductive cycle) to me, at a party when I was in the university. It was very boring, and I left that conversation as quickly as I could, and I avoided him after that.)

After the ICU…

The letters were just indecipherable squiggles. Even the comic book Mom brought to me in the hospital, was hard to read. Their was only one letterer, in the whole comic book that printed in a font that I could read, and even then I had to close one eye.

Oddly enough, I could write, and as I said before I wrote pages and pages of stuff, starting the first day I woke up from sedation.

But reading…

After I woke up from sedation, I couldn’t read. I also couldn’t see very well, and asked my family to bring my glasses in, but my glasses only made it worse. Way worse. Now I could see the nurses and doctor’s with three eyes even more clearly than before. I had no idea that it was delirium. I thought I had double vision, or maybe I was in a hospital ward, where everybody had three eyes.

My brother and sister-in-law brought a small library of books to me, flowers (which they had to remove from the ICU ward), and a writing cushion.

Slowly I was able to read the comics, and then large print books, but I couldn’t read for very long, without having to squint, close one eye, and tire myself out so much I fell asleep within 1/2 a page.

That was two years ago. Since that time I have tried to read several books, and couldn’t. I struggled so much that I lost track of what I was reading. I could read comic books, but not novels, and I missed that.

Enter the audiobook. It filled a need, but….

——

A few month’s ago, Linwood Barclay’s book, Elevator Pitch, was finally released. Knowing I wouldn’t be able to read it, I ordered it in audiobook form. After months of waiting for the audiobook form to be released, I put the disk in the CD player, and cringed. It was awful.

An elevator was plunging multiple stories and the reader sounded board, like he just didn’t care that people were going to die within seconds.

I tried to stick it out, but in 10 minutes I angrily took the CD out and realized I would have to either read the book or never know what was in it.

I read the book. I read the first few pages in the bathtub, the place I used to love to read, before the ICU. And then I read it out of the bathtub. And then I read it in my bed, before going to sleep. And then I started thinking about it during the day. And then I read it during the day, in the middle of the afternoon, just because.

And then… I finished it.

I read the entire novel, remembered what I read at the beginning of the novel, and didn’t have to close one eye through most of it.

I was so proud of myself. To me, that is a happy and triumphant accomplishment, that signals to me, that I am getting better, and I am slowly but surly returning to the health I had before going into the ICU, because of an allergic reaction because of an allergy I didn’t know I had.

Emotionally I am falling apart. It feels that my living room is getting taken apart.

Right now, as I sit on the pink polka dot floor of my room, my brother, sister-in-law and nephew are rearranging furniture in our house, and I am crying as I write this, unable to help, or see clearly (through my tears).

My father is dying. He’s getting weaker and weaker, sometimes unable to talk clearly. The man who filled our house with singing his own made up songs about everything from taking pills to brushing teeth, making our lives a musical, sometimes has a speaking voice so weak that we can’t understand him.

I know he is dying. I’ve known for months. Time doesn’t make it any easier. Watching him get sicker, and knowing there is nothing I can do to make it better hurts a lot.

This furniture moving is making it worse. I know we are getting rid of a couch, and moving an old antique radio, and an antique sewing machine downstairs, to make room for a new medical chair we are getting. It will allow him to sit up, stand up and lay down all in the same chair.

But for me, it’s not an improvement, it’s one step closer to death. The part of our family, who doesn’t live here, is in the process of making our house a hospital room, where Dad will eventually die.

In a few weeks…

A month…

A year…

I don’t know. I have no idea, but I can see it getting closer and closer, and it hurts.

It hurts so deeply, I can’t express it.

I felt this pain before, when other’s died. My grandfather’s death at age 11, was the first death. I never knew there was a pain that was so unimaginable until then. He was alive in my dreams, but when I woke up, he was dead again.

And then my other grandparents, and an uncle died.

To help me deal with the death of one of grandmother, I read almost every book Elizabeth Kubler Ross wrote. I knew about death, and the stages of dying, and I was reassured that I was going through all the right stages.

I’ve almost died myself, not once but many times. The first was when I was a baby, and my parents were told I would died in infancy. I didn’t.

The second was when I turned blue, and wasn’t crying as a baby. My mother shook me until I gasped a breath of air, and started to cry.

The other’s included escaping a house fire in only my pajamas, and a car accident that involved a semitrailer, among other things.

The last was when I crashed in the ICU on Christmas Day, two years ago. I saw my grandparents walk by. I wanted to follow, but my Grampa turned around and said “where we are going, you can not come.”

That has haunted me ever since. Why couldn’t I go? Why didn’t I have more time to visit?

But all of that, doesn’t make my father’s death any easier. It doesn’t make the guilt of focusing on myself, through this blog, through my physiotherapy (I waited 18 months to see a physiotherapist after being in the ICU), through my writing, through the countless other things I do for myself, any less.

It doesn’t make the pain of knowing that I will be there for my father’s last breath, and then…

nothing.

He will be gone and he will never come back.

——

I fought so hard to make my mother healthy, when she had untreated Normal Pressure Hydrocephalus, but I can’t fix this.

I don’t know how. I want to be super daughter, like I was for my mother. I want to get a cure, the right doctor, anything, but I can’t because I just don’t know what to do.

And emotionally, I am falling apart. I cry everyday. I hurt. I feel guilty. I’m overwhelmed. I’m paralyzed with fear. I can’t make decisions (even the simplest), and I burst into tears at the smallest provocation.

I don’t know what I’ll do when Dad is dead, but if he lingers for years, and everyday is like this day for years, I don’t know if I’ll survive. I might completely fall apart.

But… I think he might die soon anyway. Everyday gets worse and worse. He’s not sleeping well, but he sleeps often. He’s talking softly. He’s saying his good byes to friends and family.

And through I it all, I am losing more and more places that I can be comfortable and that I can just sit and heal, and be calm, because the house is being taken over by medical chairs, and equipment, and my favourite places to sit and be are being encroached on.

Ironically when it’s all done and over with, I’ll probably cry just as hard, about the furniture being rearranged into a better and more livable space for Mom and I…