14 comments

Sad Contemporary

I am…

Sod it!

I’m…

How old am I?

I know I’m not very old, not very old at all.

I also know that this… 

…should…

…not…

…be…

HAPPENING TO ME!

It’s come early to me. How lucky am I? I jumped the queue and now I get to fall apart little by little, and bit by bit before everyone else.

I can’t even remember what it is that is doing this to me. How funny is that!? It’s leprosy of the brain is what it is. No one can see what is happening to me until I open my mouth. In the end they’ll see the ravages of this horrible bastard of a disease because my mouth won’t work.

Never.

Ever.

Don’t look up what might be going wrong with you when you are ill.

Mostly this advice applies to people who tend towards hypochondria and will jump to absurd conclusions about the heat rash they have, or the common cold that is really Ebola as far as they are concerned. Ironically, those types don’t seem to worry themselves sick. They must draw some odd solace in their fevered imaginings about their demise.

In my case, I snuck a look at what I can expect to happen at the end. What it is that will actually bring about my end, because losing my mind, my memories being consumed by a vile and hungry demon and my ability to find the right words being sucked out of my brain, that isn’t going to kill me is it?

It’s when I forget the things I never knew I knew. How to breath. How to eat. How to be. I’m shutting down bit by bit and it will not stop until I am entirely deconstructed. I will be a husk, devoid of my own self and my humanity. I will be truly empty. I am experiencing the slowest and most protracted of deaths. I won’t be able to say goodbye because I will have forgotten the word goodbye and I will have forgotten how to say it. Worst of all, I won’t know who I am supposed to say it to. They may be there with me, but they will be gone from my world.

We all create our own reality. 

I find that fascinating.

More so that we share it with others. We talk and we communicate and we negotiate a shared space in these realities of ours.

I am having that taken away one piece at a time and I will be isolated. I will be trapped.

They say that the dying reach a point before death where they are reconciled. They are ready.

How can I ever reach that state? 

I won’t. 

I’m scared.

I don’t know when I will cease to essentially be me, but I have this horrible feeling that even as my marbles roll away, the terror will remain. I will be a frightened animal. Confusion will reign. I will be in this state of constant anguish and unable to tell anyone about it. There will be no dealing with it.

They put animals down when they get like that. I’ll be nothing more than an animal by then, but the rules are different for me. We’re supposed to be humane, but not when it comes to humans like me.

My wallet!

Yes! 

My blessed wallet!

Now where is it?

There it is. The bugger never wants to come out. Fights me every time. There it is! And there I am. 

My driving licence!

That photo doesn’t look like me. Don’t worry, this isn’t me losing my ability to recognise myself, not yet anyway. It’s the awful photos that are used on passports and driving licences. I also don’t need to read that name out. I still have my name.

My name is Harry Salcombe and I am thirty six years old. I am thirty six years old and I have…

Bloody hell!

This is so frustrating!

I have that brain disease that old people get. The one that gets people right at the end of their lives, and it’s bad enough then. My…

Someone in my family had it. I recall that much. I just wish I recalled them.

I do recall my wife and my two young children.

Nonononono!

*

 Sorry, I had a moment there. I get so upset at times. My emotions overwhelm me. I…

I blacked out and I don’t remember what happened. These episodes happen more and more. I think I’ve been crying.

Thankfully no one was here to see this one. Or at least I don’t think they were.

It’s not just the words.

It’s not just the memories.

It’s where the words go. It is how they are used. The context of my life is slipping away like sand through a timer and my grasp on reality is loosening. 

There is a disconnect and I can feel it. Gaps are opening up all around me.

I panic and that makes it worse. I panic that I won’t recognise my wife, Sally, or my two sons, Josh and Henry. Which will go first? The name, or the person the name belongs to?

Words are labels. I know I will lose the labels, but I’m also stood there with a label that I was going to apply and I can’t for the life of me remember why I have the label or where it might go. 

People walk into a room and forget why they wanted to be in that room. What were they supposed to do once they got there?

I am forever trapped in that room. That is my world and my world is dissolving and so am I.

The perverse aspect of this is that I am currently lucid and able to describe my disease and what it is doing to me. It’s taken it’s bloody name away from me though!

That tip of the tongue thing? It’s on the tip of my tongue? I have that feeling so often now and the frustration is allied to so much rage.

Early memories last longer apparently. I remember who I was, but increasingly, I do not know who I am. That’s not quite right, who I am now is a diseased mess of a former man. I can’t recall who I most recently was. 

I don’t remember what it was that I was doing as a job, and that defines you doesn’t it? Jobs are important. What you do is what you are.

I can no longer occupy the position of the man of the house because I am no longer complete, I am not whole.

I am no longer a husband because I can’t fulfil that role.

I am no longer a Dad, instead I am this ill person who my children are becoming frightened of, or in better moments, sorry for.

I did this to them. 

I was supposed to be the strong one. I was supposed to give them the best possible start, but now I am a walking bundle of trauma.

Oh yes, I have all these words and I really wish I didn’t. I wish this would all go away and I could go for a couple of pints at the…

…this is so annoying…

The pub that I used to go to.

And I’d have those pints with…

Gone.

The pub is gone.

Those people. My friends. Gone.

Only it’s me that is gone. I’ll never go to that pub again and I’ll never have that time with people who count because the guy who did that is gone.

I come back in waves. I have good moments. Only the good me comes back less and less. I am fading like a radio signal and I am not ever coming back long enough for anyone to hear my song again. In theory I could go to that pub and I could see a friend or two, but I can’t risk it because I cannot guarantee that the me that they once knew will stick around.

I’m a crap version of The…

Not you as well!

Come on!

How can I forget the big green man!?

Dr Banner’s alter ego! 

Look at that!

How can I remember Dr Banner, but not the name of the main attraction!

There is no rhyme or reason to it. It is an utter mess and so frustrating!

Anyway, I get like that big green man more and more these days. I suppose as the disease progresses I’ll become weaker and less coordinated and in a way that will be a blessing as I’ll have less potential to cause damage. 

I fear that in those moments that I am an out of control bundle of emotions, I’m like the biggest terrible-two toddler going. That must be frightening for Sally and the boys. They didn’t sign up for this. 

No one would sign up for this.

I should write to them. Tell them how I feel…

…about them.

*

I took a break to calm down and to reset.

I didn’t sit down to talk about the disease. Not really I didn’t. This was supposed to be a note to Sally and the boys. I wanted to write something down for them while I can. If I can, I want to write a series of notes and letters, but maybe I left it too long and now it is too late…

It is too late. I’m kidding myself because I don’t want to die. I’m not ready and I’ve been cheated of ever being ready by this awful disease, the name of which it has stolen in a sick joke to prove it’s point.

It’s already won and there is no getting out of this one alive.

I mean, how does a person sit down to write to their family and make sure their family knows that they love them and always have and always will…

How did I get in front of this laptop with the specific intention of doing that…

…and then forget?

*

Dear Sally, Josh and Henry,

I’m sorry.

Sally, I love you with all my heart.

Josh, I love you with all my heart.

Henry, I love you with all my heart.

I always have, and I always will. 

I wanted you all to know that while I can still express it.

I am so very glad that I met you Sally. We did the best thing ever in making those two kids of ours. They are the very best of us. I am so very proud.

I want you all to know that, and I never want you to forget that.

I do not want the thing I am becoming to eclipse who I really am. I don’t want you to have memories of me in a state that is just not me. I cannot subject you to the eventuality of my not knowing who you are, when you are and always be my world and my everything.

Better to end this story now, than for me to write chapters that have no meaning for me, and for me to say and do and be in a way that will only hurt you all terribly.

I love you and I am that love. I do not want to get to a state where that is not evident in my being.

This is goodbye while I can still remember you all and I can remember the word goodbye and why I am saying it and what it means.

What happens after this goodbye is on me, it is my responsibility and it is no reflection on any of you. You have given me the strength and purpose to come this far, but now it is time for me to do the right thing while I still can.

Your ever loving Harry. X 

*

This is the difficult bit. 

I have to hold it together for long enough to go through with this and beat this disease with some dignity intact. I just hope I’ve not left it too late and I have time, and one last piece of me, on my side…

December 16, 2022 20:17

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14 comments

S N
02:24 Dec 25, 2022

What a beautifully stated nightmare. Apart of me wants to see someone perform this on stage because this feels like a monologue for the ages about a disease that robs this person of who they are and have become and it is so horrifying. It forces one to see life through an uncomfortable lens and question our perceptions of the humane.

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Jed Cope
09:31 Dec 25, 2022

Thank you for the kind words and also for that insight. Also beautifully put. You've given me another perspective and I can see that monologue being performed. As a member of the audience, I would want the lights to be very low and for there to be a suitable pause turning the lights up so I could compose myself. What drives it home is that this terrible disease could come a-calling on any one of us at any time, so it truly is the worst of nightmares.

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S N
14:41 Dec 25, 2022

If there was a button to like this comment, I'd press it 3 times. Well said.

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Jed Cope
21:15 Dec 25, 2022

You can press the up arrow above the comment to the left of my name. I hadn't appreciated this was a thing until quite recently!

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S N
03:36 Dec 26, 2022

Whoaaaah!

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Jed Cope
11:56 Dec 26, 2022

There you go! A Christmas present for you - now you have the point power!

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Eileen Turner
19:27 Dec 24, 2022

I think every older person (I realize this was about a young person) has episodes of panic when they walk in the room and stand there trying to remember what they went there to get. Good Lord, am I losing it? We all die, but the thought of the mind leaving first is terrible, so normal brain slowing is scarry. Jed, you've done a horrifyingly good job of describing the onset of dementia or Alzheimer's.

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Jed Cope
21:19 Dec 24, 2022

Thank you. I too have experienced moments such as those. A temporary brain fog that threatens to hang in there and terrify... Thank you for your kind words - I really appreciate them!

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Susan Catucci
14:42 Dec 24, 2022

Hi Jed - This was so heart-wrenchingly real, I had to pause at times and then go back. I can't imagine what it would be like to say goodbye to loved ones because you still can as you watch your marbles roll away one by one (wonderful wording and devastating!) This is really good work, Jed - not easy to write, I'm sure, as you had to feel what you were writing; otherwise, it wouldn't be so good.

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Jed Cope
15:17 Dec 24, 2022

Hi Susan, thanks for the feedback. I'm glad you... enjoyed probably isn't the right word... that it gripped you and engaged you. You're right, it isn't easy to put yourself in a place like this and see and feel it, but there is something deeply rewarding about going there and writing something like this. There's a form of learning that comes from this expression, and I understand a little more about myself and others as a result. Writing can be very fulfilling at times!

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Susan Catucci
18:31 Dec 24, 2022

And, right there, you hit on one of the big and best reasons we write. You are spot on! (And why we'll continue to until we have nothing more to say - and that's not ever going to happen!) Merry Christmas!

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Jed Cope
19:22 Dec 24, 2022

Fine words and well put! I sometimes worry that the well will dry up, but somehow I doubt that... Merry Christmas!

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Wendy Kaminski
00:48 Dec 17, 2022

Such a sad and genuine portrait of what those with early-onset that-disease go through. :( Excellent depiction, and very heart-wrenching. Well-done, Jed.

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Jed Cope
09:59 Dec 17, 2022

Thanks Wendy, it's a horrible disease and tough to write about it with some semblance of balance, especially from the sufferer's perspective. I'm going to plug one of my books now, Do You Remember covers the same subject, but from the spouse's perspective. I wanted to ensure I wrote that story as sensitively as possible, so that I did not cause undue hurt, but I didn't want to shy too far away from the reality of it. Challenging, but I'm so glad I kept going and the book saw the light of day.

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