The Apology (More scribblings)

The Apology

Let’s get straight down to business. The salient truth is that one day the life I once knew came to an end. Yep, gone, t’ra, toodle pip.

It is an ex life. It has ceased to be, I trotted off this mortal coil in order to push up some buttercups. Is it buttercups? I forget.

It was so very difficult, sometimes impossible to comprehend that all I knew had gone. That sentiment only increased over the years and there have been twenty one of them. Twenty one long years. My new life has matured and is now old enough…

To vote; when it remembers to.

To drive; it can’t, partial blindness caused by the brain injury would make driving an absolute lottery. That and the complete lack of spatial awareness. After all, I can’t walk down the street without colliding with lampposts. I wouldn’t be safe in a bubble wrapped bumper car. I’m not sure the roads of the UK are ready for me just yet.

To drink alcohol; it can’t, epilepsy denied that pleasure. Due to medication I feel half-drunk most of the time anyway. Without alcohol I have the memory of a goldfish with Alzheimer’s disease. I hardly need the odd libation to wipe what recall I do have.

To have sex; if I can stay awake long enough. I’ll say no more. It was all I could do to prevent myself typing ‘stay up’ long enough. Ooh-er Mrs.

And it’s now old enough to know what the hell happened to me. And is still happening right up to this very day.

That’s the nature of a bang on the bonce; confusion. Massive disorder in my mind, incomprehension shadows me like the gloomiest rain cloud preparing to unleash a deluge of perplexity. I know it’s there, it’s always there. The monkey on my back, the albatross overhead, the angry weasel with a chip on its shoulder. I learnt to live with it.

That and the ability to invent nonsensical idioms. It’s a gift.

However…

Back in the day, long before I became twenty one again, it began. The curtains were closed, slammed shut. Well, to be fair, they were curtains, not so much ‘slammed’, but more ‘flopped’. They needed opening, I had to let the day begin. And commence it did, as the flaccid curtains were swept aside and the hard graft started.

While I was hurting, while I was struggling, while I was learning, there were other people around. There still are, every day. It’s just a question of tenses really. Watching, witnessing, feeling my pain. Either on the side-lines or directly involved, family, friends, all observing the effects. Mostly it was no spectator sport, it was grim viewing if I’m honest. And still they remained, standing by with a collective arm outstretched. Twenty one years later and it’s still there. A comfort blanket, a safety net cushioning the unavoidable falls.

It’s a whole new world out there, and that world has a habit of biting back. Sometimes it is just a nip, although occasionally, it’s like a bite from a hungry shark. And those nibbles come thick and fast. Each bite eroded away my former self and ate away, no pun intended, at the life that had sadly departed. All the while…

Watching, witnessing, feeling my pain…

Two entire decades, my memory now plays tricks on me. There are so many bites that they all seem to merge into one. Remembering can be exhausting beyond belief. I had never thought it possible to get so drained, so shattered simply from attempting to recall what the day is. Another aspect of my life that my previous self had taken for granted. There was never any reason not to. I was a twenty five year old man and it didn’t seem a lot to ask to remember where I kept my keys. It was never a conundrum. However, after the injury, I could then forget where I kept my pants and socks, let alone my keys. Not when I was wearing them, obviously; my pants and socks that is, not my keys. And with the exertion of something as basic to a human being as ‘thought’ came the inevitable headaches. The first to strike shook me to my very core. It smarted, just a tad. They continue to this day, bless ‘em. Pass the Nurofen.

Other pain relief is available...

Almost a year after the old brain took its battering and continued to fight the good fight, epilepsy was thrust into my life. The unwanted gatecrasher causing havoc with every appearance. A lightning bolt from the deepest blue. Body spasms, unconsciousness, confusion, memory lapses, post seizure headaches that make the usual head pains seem like old friends. Well, it keeps me on my toes. And still…

Watching, witnessing, still feeling my pain. The outstretched arm remained, absorbing the anger and feeling my frustration,

Fatigue and apathy soon entered the fray. More undesirable visitors cluttering an already overloaded brain. They pushed aside my old friends ‘eagerness’ and ‘concentration’ as ‘alertness’ looked on with all the subtlety of a slightly annoyed bricklayer wielding a sledgehammer. Oh, he had anger issues too.

The passage of time was a cruel mistress. Particularly when my addled brain was struggling to establish some form of normality… whatever that may be. My life in its entirety had altered beyond recognition. Epilepsy could now strike without warning at any given moment, throwing the day into chaos. Fatigue that plagued almost every aspect of my life began to throw up barricades. It was hard to live with what I had become. To live in the present and not rely on the past.

And still they watched, witnessed, felt my pain. And for some, it was too much, too difficult, too much like hard work. Relationships ended and friendships broke down. Ultimately, people vanished. They had their reasons, I was never told what they were, but I’m sure they had them. Occasionally I had the courtesy of an invented tissue of lies that possibly salved their own conscience, but only served to batter my own into submission.

Relationships with everyone in my life, friends, new acquaintances, and even the odd member of my family seem to be based on the flipof a coin. Should a ‘Head’ land on terra firma and whatever my brain throws into the mix, they’ll hang around. Should a ‘Tail’ drop gracefully to the ground and they’ll turn that tail and run for the hills. And that’s how it’s been since the day I landed on my cranium with one hell of a thud. But wait a moment here…

I like to think I’m not a stupid man, I pride myself on it in fact. I’m forty six years old now, time is marching on relentlessly like a runaway train with only one destination. I’m married to my best friend, a couple of children have their place in my life and I’m still learning more about my own limitations and abilities. Only one thing has remained constant throughout the journey that became my second shot at this rollercoaster we call ‘Life’. That damn scar on my brain still throws its weight around whenever it fancies a bit of a giggle. And thus…

I still forget things with frightening regularity.

I can’t control my emotions like I should.

Background noise irritates me to the point of exasperation.

I still invent idioms like a ferocious aardvark with a knuckleduster.

I may have a seizure with varying degrees of severity at any given moment.

Fatigue is a pest that simply won’t leave me be. And sleep is my panacea.

I can’t socialise like I once could.

I can’t drink, I can’t drive.

I am no longer the ‘me’ I once was. And do you know what? I no longer care. I wouldn’t change one God damned thing.

I throw out these statements with gay abandon, almost on a whim. The fact remains that while I was coming to terms with the throwaway facts, those people close to me WERE watching, they WERE witnessing and they WERE feeling my pain. For instance, let’s start at the very beginning. I was in a coma in hospital. Essentially, I was asleep, just for a smidgeon longer than usual. I always was a lazy sod. While I slept my family and friends sat at my hospital bedside wondering whether I would live or die. I had it easy, I really did. I still do.

The first epileptic seizure and every single one since sees my good self disappear into another world for however long, while whoever is there can only watch, wait, and worry. Again, I repeat, I have it easy.

And presently, I have a wife I adore. The lady who came along and turned out to be the missing piece in my jigsaw. Who knew? The rock to my roll, the milk on my cornflakes. Much like my friends and family who were there long before that missing piece arrived, she tolerates the moods and the headaches. She lives with the forgetfulness, the now thankfully muted anger, the annoyances, etc. They’re all part of just another day.

Twenty years of watching and worry. Good grief, I’m so sorry for putting you all through this journey, none of you asked to be passengers, you really didn’t. You still don’t, you never so much as complain. I certainly didn’t want to be the driver and I’m sorry for handling the steering wheel with buttered fingers.

For SN (and others)

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22 Replies

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  • Brilliantly said Andy. So much of it I can identify with! Wish I had the fairy tale ending though.

  • Thanks Andy, it's good to know someone else feels the same.

    I've been going though a reflective time, my thoughts are written in a journal I keep, I only write in it when my head can't hold any more, but you've written it all for me.

    I've only three and a half years experience of this, so I bow to your greater knowledge, I am still hopeful there will be minor improvements but I am aware now they will be minor.

    The lip service I paid to my recovery is now in the past, my brain injury was very severe and I truly am lucky to be here, for the family I am glad I am, and I can make the most of the situation, but this time of year was always one when I could easily sink into depression. I'm fighting hard and will not succumb, but the days are soooo long, I'm so grateful when I can escape to bed, dreadful to say but there it is.

    And, awful to say, I am bored. I no longer drive for the same reasons as you, so I'm limited to where and when I can go, yesterday I took the bus into Manchester just to get out, today it is raining and I don't fancy getting soaked.

    The next week will be good because my husband has a week off work, so I can look forward hopefully to swimming and a walk every day, easily pleased aren't I.

    Enough, already, we are fine, we have accepted and life is good on the whole, we just need to stretch ourselves.

    Love Janet xxx

  • Hi Janet,

    I learnt to accept and grow to love the fact that my happiest moments are in my bed LONG ago. It's nothing to be ashamed of for the simple reason that most of the time I just feel ill. Can't be helped, so there it is.

    You do just fine, you really do. Never be hard on yourself, it's just not worth it. Honestly, you're on top of it, try not to worry. Just do your best, that's all you can ask

    x

  • Me again, I was just thinking we are playing the hand we were dealt but none told us the rules before we had to play, making it so hard to get it right, there's not that much guidance along the way either, mores the pity xxx J

  • Hi Andy.

    well said and so apptly put.This rollercoaster ride we are all on can be frustrating and confusing. Although we may never have chosen this ride the alternative is not an option to be taken.

    As we continue this ride we can easily forget the other passengers that HAVE CHOSEN to ride with us. They allow us to vanish into our little worlds when we need to retreat and repair. Whilst they deal with dayly life to allow us this option.

    The daily struggles with memory anger and pain are mine and mine alone. Yet close love ones not only dont run for the hills but insist on lightening my load.

    Reading your post has reminded me no matter how bad I feel I am not alone.

    Once again very well put.

    Pax.

  • Thanks Pax. Ta for the kind words, much appreciated

    Andy

  • Thanks for helping put things into perspective Andy.

    Pax

  • Well said and written and I'm only coming up to 3 years in April 2016.....

    Mandy:)

  • Hi Mandy,

    Thank you, very kind. I'm sure like the rest of you're doing your very best. It aint easy, it aint fun, but then, nor is 'normal' life a lot of the time! Keep on keeping on...

  • Dear Andy

    You have written so powerfully about your TBI I feel like they have winded me.

    They have hit the spot and echo so much of how I feel.

    Glad you met a lovely partner to share your journey.

    Thank you for sharing.

    Love AX

  • Thank you very much indeed, everybody's kind words keep me going with my writing!

  • Fantastic piece of writing! Absolutely sums the journey up... I started to copy and paste relevant bits to my life and then gave up as it is exactly how we live! I woke this morning annoyed at myself for feeling as though I couldn't manage to go out to get some shopping today but you're right...I'm doing okay, so I'm not going to be hard on myself....I'll rake the freezer and use what's in the fridge, not be hard on myself or mope around wondering if anyone will visit me now I'm an invalid, I'll be grateful to those who do and remember none of them asked to be a passenger on this journey! Wow! Can so relate your post! xx

  • Thank you so much, I'm just glad I manage to strike a chord when I sit and type. I'm pleased there are people out there who don't read them with bemusement and think, 'pull yourself together!'

  • i enjoyed reading that have you though about putting these in a collection?

  • Interestingly, Andrew from Headway contacted me a week or so ago and asked if I would be interested in having a page on their new website to post my scribblings.

    I await with baited breath :)

  • you do have a good turn a phrase.

  • I hope so x

  • Do it! It's a breath of fresh air to us all knowing that we are not the only ones with these feelings, thoughts and this way of life now. You clearly have talent for putting things into words exactly the way they are....you could have been writing about me in your post or probably any one of us for that matter! Fantastic to be able to express your feelings of this journey we are on in such a way that relates to most of us in the group if not us all! Bravo you talented guy!!! xx

  • Thanks Andy for managing to say how so many people feel. As my husbands carer it really helped c

  • I identify so strongly with all this Andy. Especially the lying in bed 'out of it' whilst everyone else was worried sick and spending every waking moment either with me or fearing for me.

    And despite some valiant (though I say so myself) attempts to resume normal service, I'm constantly apologising for the less able, less patient, less humorous and much less compass mentis person I've turned into.

    Oh and trust you to be different to everyone else.......................we mere 'commoners' push up daisies when we expire ! At least you kept it fairly modest with buttercups. xxx

  • I'm just so pleased I keep touching nerves. It's like a blunt double edged sword. I'm delighted that I'm wording it in such a way as to make people in similar situations identify with me. And the other blunt edge is that my feelings are clearly not exclusive to me alone.

    And... buttercups, first flower I thought of :)

  • yes and the way to the "new me" new life is seemingly full of road blocks one of which memory and fatigue are both ugggh!!!!!!!!!!!!!!

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