Saturday, 14 January 2017

Losing My Mind

Chuck has us talking about what we fear the most. I have Epilepsy; and the one thing I fear the most is the other diseases that come with this disease as I age - the ones I have absolutely zero control over when I get old. I don't fear death... never have. After so many seizures, an overdose (which wasn't my fault)and being a person who just accepts what goes on in her life... I've found that the one thing I would hate the most would be to forget my nearest and dearest.

The ward is full today.

It was empty yesterday – but it’s full today.

It’s full of voices, people, noises and colours... oh! So many colours, colours and waves... too many to look at, so many I have to look at the blank, smeared tabletop to make the colours...



That’s better.

Closing my eyes, it’s time to breathe again.

The door over near the nurse’s station opens and closes. Oh! Visitors! It’s 10am already? I look over and see three people. They’ve looked my way and one waves at me. I have no idea who it is but wave back.

Were they here yesterday? Last week? Last month?

No idea.

I put my hands on the table and find they’re shaking; but I can’t stop them. Damn it, I wish they would. 

It’s just a tiny tremble, but...

“Hey sis.” He says, “It’s me, your brother, my wife and your niece. We came last week to see you.”
Oh good, it was last week, “Hi. It’s good to see you.”
His smile falters as he realises I don’t remember the visit, “We thought to bring some photo albums to show you. Get your memory going again.”
“Okay.” I smile.

They were there for a few hours. We have lunch downstairs – where I’ve never been on my own – and I found their visit wonderful. My niece gave me a photo album she had refurbished with everything from my life, their life and other photos from outside of here. It was to remind me of good things.
The thing is: I don’t remember losing the memory of these things.
My life just started fading like the old photographs – like those receipts you get from the store. You know the ones: after about a year, you can’t read what’s on them, so you end up throwing them away. That’s how my memory has been lately.
That’s not all either.
I’ve been forgetting how to cook food. I nearly burnt down my house one day when I didn’t know how to turn off the stove. Strange how it was that I knew how to turn it on. I also took one look at my car and – with the keys in my hand – had no idea how to unlock it, or drive it. It was just for a few minutes, but it happened a few times.
But the one thing that really hit home – bothering me – was when I arrived home one day and I pulled out the house keys and didn’t know what they were used for. I still have a set of them; and still have no idea what the big ‘Hawks’ key is for – but it looks impressive.
The doctors said that my mental decline was more sudden than they expected as such a young age. However seeing how many seizures had damaged parts of my brain, they were surprised I had been able to live on my own as long as I have.

So, here I am in a nursing facility.

One minute I’m good. I’m fine. I can talk to you about philosophy and the big sciences of the world. 

The next? I’m wondering what my name is... all within about two hours.

I’m not insane.
Epilepsy patients have this problem. When they get old, their condition changes. It changes them and their brain as well. They have a high chance of dementia, Alzheimer’s or Parkinson’s Disease – or if they’re unlucky enough, all three. I unfortunately, scored the first one. This was my biggest fear; that this would happen to me.

And now it has, I wish I had travelled more in my 40’s...

Am I in my 40’s?

The ward is full today.

It was empty yesterday – but it’s full today.

It’s full of voices, people, noises and colours... oh!
Hi... what’s your name? 
My name is... um. 
Oh darn, I knew it before, when... I have some photos here. I don’t know where I got them from, but they have some people in them I think I know.


  1. This story is terrifying, simply because I can't even imagine what it's like to forget like that, to relive days over and over, to go through moments of not knowing who other people are, even if I've known them all their lives. And the truly sad thing is, as you say, you might not even notice it happening. To you it might just feel like things getting fuzzier, whilst to the outside observer it might be seen as a rapid decline. They say ignorance is bliss, but I think this sort of ignorance is a form of torture.

    On another note, I hope that your seizures are manageable, and that your fear is unrealised in the future. Thanks for sharing something so deeply personal!

    1. I haven't had a seizure since 24th, April, 2004. I'm one of the 5% of the Epilepsy patients in Queensland who are allowed to drive a car (so long I have my arm band on, a doctor's certificate and the letter 'M' on my licence - the certificate is reviewed every year). I get my eye sight tested every year in case my medication is making me go blind (it's only one of them that is able to do that) and I'm in constant review with my neurologist. I get blood tests every year to make sure my liver and kidneys are functioning well and that my levels are okay. And I go to a shrink (for my own well-being).

      There have been times where I've forgotten people's names until somebody said it... because I was too embarrassed to tell them I had forgotten it; and these are people I have known for over 5 years, and they know I forgot as well and laugh it off knowing it's my brain stuffing up.

      This fear is with me every day. Losing my mind when I get older is something I don't ever wish for because my brother and his family will have to look after me; and I don't want that from him. It'll break his heart to have to do that; as it breaks mine to know he'll have to. But dealing with this kind of condition is an on-going commitment in life... I'm always taking medications, vitamins and minerals, I'm always trying to eat the right food and drink antioxidants so to flush out the unwanted/un-needed medications from the day - so there's no build-up in my system.

      Life for an Epileptic is complicated. For me, it's not so much because I've been dealing with the condition/disease for so long. But for people who are new to my life, it's huge. It's too much sometimes and very confronting. And part of the disease nobody talks about is right at the end... where the brain starts to wear out from age, the seizures (the dead cells and thousands of dead areas that haven't been able to be reused or rewired again) and just plain old age of the person's organs as well - mainly the heart muscle.