Dear Diary: The Night Is Dark And Full of Terrors

My attacks happen in my sleep.

I wake up, sometimes I am ok.

Sometimes I am not.

Sometimes I am paralysed

Sometimes a little.

Sometimes a lot.

Sometimes I can speak.

Sometimes I slur.

Sometimes I make no sense.

One time it didn’t hurt.

But I woke up.

And sound strummed agony for chords

I tried to smile but that didn’t work

Advertisements

Monday Night Reflection: Nothing To See Here

It is difficult to reflect on a week, where, to my mind, very little of what happened is Mouse related. Mr Mouse, it would appear has not been busy. Where Mr Mouse was once busy sorting out and tidying around making sense of my world and doing a great job in the background of getting things done for me there is now space. Worse, a slightly sticky space bar is hindering my efforts, which is perhaps the problem.

At the moment all my sense are turned way up, sounds hurt, touches, tastes, they all cause physical pain at very low intensities, on a certain level, I am guessing this is what autism must feel like because input, is generally, not a pleasant thing. And life is all about input, sleep isn’t restful and tired, sick, nausea and generally feeling in pain in some way is what it’s all about. Creatively everything is dry, projects are dry, work is gone, nothing to do, no inclination to do it, and recovery has hit a wall with even physical progress coming and going. It has been another tough week after a tough week. So while the stats people could say the trend on the graph is positive, it is positive trend on trend, its a very slow trend and the negatives are big, the downs are big, the relapses are huge and the experience is anything but what someone would call fun.

It would be accurate to say, at least some, if not some large chunks of the time, I have started to feel more than just a little sorry for myself. Because, I am not going anywhere or getting anything done, and if I am making a little progress, one I can’t share it and two it is only back to a level far below the level I was at anyway before all of this started back in March. Imagine playing in an orchestra and then having to back and start grade levels, that is the equivalent. At the same time, the physical pain is intense and debilitating, my mind is working at a physically tiring level, so writing this is the mental equivalent of a workout when once it was easy to write and introspect. In fact, not only was it easy, it was a fun and helpful, now just writing an email to a friend is taxing and difficult as a task.

It is difficult because, I have to recognise that is, really, very early days. I don’t have a cast to see or a wound to see healing, which is a huge part of the problem, it is all happening in my head and inside where no one can see what is going on, and it is messing with my emotional and coping capacities as well as impacting on my personality. The impact is on how I see and feel about myself, there are suicidal thoughts and my self-talk is very negative, you could say I am depressed, but at the same time, I am not depressed in how I have experienced depression in my life previously. This is a complex awareness that I am two people existing in the same space at the same time failing to cope with the existence of each other. This is the stuff my Mouse used to handle for me, this is what I let my mind sort out in the background my focusing on positive goals and helping others. Those things do not work, I am tired, my concentration has gone and my memory awful, but of course I have not given up. The two, the depths of despair and abandonment alongside hope and optimism are together interwoven bound in single thoughts.

The past is the past, and this has happened, the future I thought I had, it is not the same, and where I had a plan, I do not even have a plan about how to plan anymore. I would say I am fighting, but I am, it feels, more trying to work out who the opponent is, before I start fighting back. So far it seems the opponent is me, or more precisely a me that has started to malfunction and is apparently going to start working again spontaneously. There is no fight, just waiting, which is perhaps, ultimately, why I cannot cope. Previously I have a process, a fight, something to do, and this time, all I can find is, wait and time does the job. Great, if you are on the express train, not so great for those on the slow boat. I think I didn’t get off the harbour here.

The purpose of reflection is to do, and that is where I am coming up blank each and every time, I have no do. So far, it’s do what I can still do, setbacks like getting food poisoning included, and keep looking for new opportunities and avenues to make progress, even if, so far, they have not opened up or become apparent.

Dear Diary 14th April 2017

I have nothing to say

My voice has gone literally and metaphorically

I am scared to sleep tonight

Scared to say I had a small attack

My mouth is numb and my head is throbbing

I know the signs now, even when they are mild

Staying awake doesn’t change a thing

Sleeping gets it over with

But still I am scared

What if this time is the time I don’t make it back?

Dear Diary: 20th February 2017

Don’t stroke the Mouse!

Mouse was rushed into hospital last Tuesday with a suspected stroke.

Nearly a week later all we can say for definite is that Thursday night his brain showed no sign of damage.

20 stroke like episodes later Mouse can barely move his left side or speak.

His NHS experience is far from positive but with every reason to be down my brave Mouse is still upbeat and planning new projects for when he finally comes home.

Mrs Mouse

Monday Night Reflection: Logan

Apologies to those who haven’t seen the film, this will no doubt have a spoiler in it. This is not a film review, instead, Logan, like other fictional works became a mirror in which I could see myself more clearly. Great writing, great story telling, whatever the medium talks intimately to its audience, the very best covertly seduces the audience by first entertaining, and by that means lowers their defences so that the piece can speak to those who are willing to listen.

Some films and works are overt in their message, there are self-consciously preaching and reaching for a reaction and response. Usually they achieve their goal of an Oscar nomination or two, or perhaps the equivalent “art-house” recognition that they were born to seek. However, in my mind, the greatest achievement is to talk and embed a thought in something covertly from the Christian allegory of Wall-E to the crushing grief and loss woven into the fabric of Rocky Balboa, such writing is able to stop us dead in our tracks and cut through all our defences precisely because it hides in plain sight while we sought distraction from our lives and struggles.

And so we meet Logan, the once indestructible Logan, the anti-hero for the ages, moody and broody, reluctant but the first into battle for the right cause, driving a Limo at a 4th rate stripper bar. This Logan has a limp, is clearly old and sick. Our Hero has fallen. When we met Logan he was drinking and fighting in a bar for money, running away, this Logan is working to support and care for his old friend Charles Xavier, drinking to hide from the past. The once brilliant mind now dying with dementia, and Caliban literally hiding from the light, like Logan seeking redemption that he cannot find.

The world has changed, Logan and his kind have become  irrelevant and forgotten, their lives passed into mythology and fairy-tales for children and disenchanted youth. Our protagonists are haunted by their failures, hurts and the death of those they loved, they no longer have a place and are simply waiting out their days till death will release them from their suffering. Logan self-medicating, Caliban obsessing and Charles losing his battle with demntia, needing to medicate himself to keep others safe.

If I were twenty, thirty even these would be characters and perhaps little more than back story giving depth to what is to come. I would perhaps focus on the emerging and the new, but I am forty-five. I have lost loved ones, I have made mistakes I cannot change and I carry regrets. Like Logan, I am no longer indestructible, my body has let me down and broken, my place in the world was taken and I am left slightly irrelevant without a place in a world I no longer really want to be part of. Like Logan, I want to pass peacefully, without incident or drama through the days and I am tempted to self-medicate away the pain both physical and emotional. I am not alone, this is the basis of the rather dismissed mid-life crisis, where you realise you have less years left (statistically) than you have lived, where people get sick, they die and you know why people wear sunglasses at winter funerals. And, while many are peaking in their career, many of us never peaked, never had much of a career and see that their time is passing, perhaps past.

It is not all gloomy and black, of course, there are things to celebrate in life, however, those are fragile. Many of us have had those stripped away through no fault of our own, hard work rewarded by being laid off because we were top of a pay grade. We have achieved what we were told was the best thing to achieve and it is nothing at all. The curse of self awareness. The Power-Rangers Movie or Cars 3,  I don’t get to take my children, while other parents will complain and see this a chore, we squander the gifts too easily, and when they are gone we regret we did not cherish them more.

And so Logan is a reflection of us, we see our lives in the characters or we see nothing. If you see nothing then I am slightly envious, because while there are only elements of crossover with these ultimately fictional characters, they are some of the most painful elements of my life. I have tried to hide away and drink, as well as drug my way through life because it hurt to much to face reality. I am keenly aware that as a choice these are on my shelf and while they are not “go-to” so much as they once were, they are preferred ingredients.

Part of me is happy to pass gently and relatively quickly to a state or irrelevance, I have lost faith in a world where I have never felt at home. I have never felt of a place, and the places I feel most connected to I have only visited a handful of times and never lived. I am disconnected completely from any sort of family and have never wanted any connection, when their lives crossed I felt no affinity or desire to foster relationship. Their concerns and focus alien, and their drama’s and big deals seemed irrelevant and trivial compared to what matters. The tie of blood no bond at all. And so it is with the world, I see hate and suspicion growing with an agenda with which I want no part. Not even discussion, because that assumes they are legitimately objects for consideration, and in my world they are not. #notmyworld perhaps?

I have to walk in this world, despite my intense desire to be apart and away. I find myself dragged in and helping others against my better instincts, and I am no hero. I hope simply that what has happened to me can stop someone going where I have gone and feeling what I have felt.

Leave the storehouse of regrets untouched and gathering dust.

Poetry Corner: Late Night

My thoughts are not racing,
But I talk so fast I struggle to keep up
There is no turmoil
But I am lost and confused
A maelstrom of word and picture
But clear and peaceful too

My windmill spinning without the wind
But I am still grinding,
My kart still racing down the hill
But I am on level ground
My river still roaring by
But I stand on desert sand

I think of sleep, it comes quite easily
But never lasts,
Short burst are all it ever seems to be
But morning so quickly comes
No rest in calm harbour
But the restless sea

I try to cheat and make it last
It works sometimes and frightens me
I am one with the certainty
It will be as it always was
Now I rest in stuttering tone
And paint my art in tired brush

Poetry Corner: Waiting for Bedtime

Pain sits with me, mistaken for a friend

Never far from attention my travelling companion

 

So I wait for you to finally fall to sleep

You let me nap, short bursts to tease

 

But rest you surely keep from me

Fatigue disarms and deceives the eye

 

Too deprived to conceive a fight already lost

The drugs they failed and made it worse

 

All gone I stand not quite alone

My friend is with me, no bed, just yet

Poetry Corner: Night

Everything is quiet now, my world is all asleep
She will lie in peace until the morning creeps
In rest, she finds escape I cannot reach
Her sleep brings peace even she cannot teach

In restlessness, I ponder, did I so calmly slumber
Was I robbed silently or was it ripped violently asunder
Fatigued, my mind will not still, murders my dreams
This incessant turmoil no saviour redeems

My physical self wages war, burning through my core
Waking me through day and night for evermore
Aching quietly for more temperate whispers
Medication brings no silence, reality no longer blurs

Waking nightly drenched with unknown fear
Fighting shadows, trembling no one can hear
Winter is worse too long the night, summer no respite
Day brings no mercy, no glorious end in sight