Ian Butler's Blog

To be frank even with my first victory I realise that has to be paid for.  A half an hour session with the physio costs two hours sleeping as just the simple things tire me out. So when i wake up i’m ready for lunch and I get the usual calorie-counted meal and the euphoria of the previous physio session has worn off. There is a serious depression setting in and that is not made any better by the thought that I feel physically wrecked and I have no energy at all. Their follows a few moments of tears that feel a bit self indulgent to say the least but I snap out of it by just looking round the room. The ward is full of people who are worse off than me and all the medical staff here are reminding me that I’m lucky even to be alive.

Then it hits me….and the tears come running down now…….I am lucky..

Lucky to feel loved…

Lucky to have friends…..

Lucky to have another chance….

and lucky to be alive.

It’s a hard life ahead and I can’t imagine what life will be like, but today it’s about counting blessings and maybe that’s a part of seeing things differently.

Another day, another physio session and another attempt to move my arm. Today I am laying down on my back and the physio is lifting my arm at 90 degrees to my body. This looks like a horizontal nazi salute and the fact that I can think about that is a good thing as my attempts to complete this task ends in miserable failure. To distract me the physios help me stand up and this is more positive and I manage to stand and practice locking my knee, something that is preventing me standing unaided. Whilst this progresses I am acutely aware that I have no real mobility. The work I do with the staff now will determine my life for the foreseeable future. Whether I return to a vaguely normal life is being decided now and have to maintain my focus.

Somehow and I don’t know how, I manage to lock my knee and hurrah I’m standing properly. I actually shout with delight and those that know me will tell you that I have a big mouth. So it happens that a couple of nurses misinterpreting my screams rush in to find out what all the noise is about. Having achieved that feat we try the arm movement again and bouyed by my ability to stand up,  try even harder and now laying down I can do a nazi salute.

Only in this context would I be happy doing that and to be honest it lasted  3 seconds. 3 of the most joyous seconds of my life. An indication that I may be able to at least start  to move my arm, A small, hard won victory after my devastating illness.

This day will be seared into my mind and I have promised myself I will remember my first real victory on my passage back to normal life.

Anyone who has had to suffer a prolonged stay in hospital knows that a visit from the nearest and dearest is absolutely vital. One, to keep up the moral and two, to return you to a normal person after the onslaught of institutionalisation that comes with being ill and in the care of others. Today, although i’ve had visitors in the previous days, I’m inundated with those closest to me and it’s a godsend.

The passage of the day was difficult as everyone is emotional and as serious as my condition is I’m petrified of giving them more to worry about. So it’s a case of “putting a brave face on” and smiling. So when all the hubbub dies down the smile vanishes and the books they’ve bought me lie unread and I’m coming down hard. That descent is not made easier by the opening ceremony of the Euro championships which don’t include England. Thanks to the useless Steve McClaren. What all England fans will remember is the umberella and I’m trying to think of a metaphor for my condition but am struggling to find one.

The evening closes with me doing my exercises on my hand with frustration being the winner. My arm and hand stubbornly refuse to move and as I strain and strain the cramps in my leg begin. Eventually when I’m exhausted to the point of tears I give up.

I fall asleeep to await another day, and maybe another set of frustartions

In hospital everything is a routine and once you get your head around it you begin to realise what institutionalised means. My stomach began quite quickly to get a pattern around hospital meal-times. This was strange as I’ve always had a difficult relationship with food, and the rigidity was awful at first.

At 10 every day, it’s physio time. Today the aim is to stand up again and it’s so hard. My knee wont lock and its a struggle to keep my balance complicated by a light headedness that I’ve experienced since my stroke came. However after some time it begins to get easier and I whoop with delight as I rise from a standing position and stand up un-aided.

This joy is short lived as I realise how tired I am and that this effort must be paid for. It’s hard to explain but the mere fact of standing has exhausted me. I was an active guy so getting used to standing up and being exhausted is really dis-orientating, in addition to the fat that I still cannot move my arm or hand. However my chat to the Emma my physio is greeted with a “one day at a time” cliche and I’m taken back to my bed and I can rest while I wait for the tea trolly which appear at 11.00 am on the dot!!!!

As I gently nod off I begin to realise that for someone who used to be a social work manager, I’ve just been cheered by the revelation that I’ve just learnt how to stand up. My life is truely upside down.

Just had to post that I am from today a published author………

http://www.amazon.co.uk/Burger-Bar-Dad-ebook/dp/B00865COZU/ref=sr_1_cc_1?s=aps&ie=UTF8&qid=1338041687&sr=1-1-catcorr

You can download a sample from here. Please help your self

Next morning, after breakfast the physio’s arrive and I’m hoisted to my feet and placed into a wheelchair. My physio is determined to get me working on my left arm. She also explained that whilst it’s good news that I’m getting some feeling back in my legs, this will come at a price. For the next few weeks I’m likely to experiencing muscle spasms and they will be painful. So it turned out, but thats for later. Today I was given a task that had me completely in tears, with frustration. It left me dizzy and with a headache. I was asked to move my thumb. Just my thumb. Imagine your hand and the complexities in volved in picking up a pencil or some change from the counter. You do it without thinking right? Now imagine trying to do that and nothing happens. Nothing. I was scared and the harder I tried the more tearful and frightend I became. Yet nothing moved, my arm was just dead flesh hanging from my shoulder. The physios were manipulating it and I was trying might and mane but nothing worked. After half an hour of this the physios returned me to my bad and defeated and crushed by the effort and the failure, I retreated into a deep sleep. The other thing I need to tell you is about the tiredness, a stroke essentially damages your brain, in some instances parts of it will die. Therefore your brain has to work harder to do the things it used to do, and that costs you in energy. The tiredness is a killer and a short physio session has therefore to be followed by a long deep sleep.

Sadly this is interrupted by the spasms that the physio had previously warned me about. and they are stunningly painful and its like having massive cramps that last mercifully a short time. All in all a frustrating day, with progress in my leg marred by pain, and progress in my arm non-existent. Later  I have visitors and they are kind and bring me magazines and books. I try to read and again, I’m frustrated in my efforts, with brings a fresh bout of tears testing my determination to walk out of this place. I’m also dying for a cigarette, one of the reasons I’m here in the first place. So all in all not the greatest day in my life.

Waking to the sound of nurses knocking out a breakfast I enjoyed a wierd feeling. My leg was tingling all over and I could move my toes. The charge nurse examined it and noted it down and for the first time things looked less than bleak. Ever since my stroke the professionals had told me that I may recover movement naturally as well as having to work on my physio and I was so relieved by this small progress.

However, the realities of being partially paralysed began to come to me a little later when I needed to have a wash and get changed after breakfast. Yes a nurse gave me a bed bath, and for a man who pubescence was dotted with first screenings of Carry On movies the comic and other expectations were high. These were quickly dashed as the nurse involved was not a scantily clad, large breasted blonde but a big geezer named Raj. It was beginning to dawn on me that the path that my life was taking was not going to be a complete bed of roses. Having said all of that Raj was the complete professional and made me feel cool even when the inevitable scrub of the back sack and crack reared its ugly head, Thank god.

Then my first real round of physio began and I realised the extent of my journey back to full mobilit was going to be long. I had to try and stand and nothing happened in a way like it used to. The staff hoisted me to my feet and I realised that I couldn’t lock my knee and my left leg was shaking uncontrollably. At this point I also had to deal with the reality that my arm and hand was not moving at all.

Some progress made but lots more to do.

 As I lay in my hospital bed, tired distraught and frightened there was no time it seemed for even a fitful sleep. Almost the whole night I was looking at my useless left arm and useless left leg wondering if I was ever going to work or even walk again. Everything I took for granted had now been thrown into doubt. I had tried to read but the task was very difficult and I soon dissolved into tears as the thought of a life without even reading beckoned. Sleep seemed elusive as I mulled over the thought that I would have to mentally say goodbye to almost everything I had known.  However I must have got some shut eye as I was wakened by the nurses bringing breakfast at 7.00 am. Barely had I had time to digest  that, when the Physiotherapists arrived. Now for anyone suffering from a stroke, especially one as severe as mine, physical therapy is essential as soon as possible. There first task was to assess the damage and tell me what I needed to do, which amounted to ‘keep trying to move everything’. That was then followed by me being hoisted out of bed and plonked into a special chair to make sure I could sit up. My Physio was friendly and firm. In addition to that she was honest and told me that the more I do in the early days the more movement and control will return. It’s hard explaining to people who’ve never experienced it how it feels to learn how to sit in a chair again. However after a stroke almost eevrything has to be relearnt and neural pathways have to be rebuilt. So even sitting in a chair required a huge effort. After managing that and a confidence boosting motivational talk I was then left to my own devices.  There was a TV screen in the hospital and for a charge you could watch it. I had been gifted a free card and at around 2.00pm, turned it on. The channels were pretty dull but it did have channel 4. The film on that afternoon was ‘Reach For The Sky’  I know it’s cheesy but the moment that Douglas Bader throws away his walking sticks and says’ I will walk on my own’ was a life changer for me. At that moment I decided that I was going to walk out of this hospital as soon as I could and get on with the rest of my life.

One of the things you need as a writer is time. Time to think and time to process that into something intelligible. But the real thing that ties it all together is a reason to do it in the first place. In 2008 I was given the time and I was most definitely given a reason. I had a stroke. A massive and debilitating attack on my brain that has left me debilitated and for a short time completely paralysed down my left side. A few months ago I tried to write a poem about my first reactions when I first realised something was wrong.

Click

Click.

Random Click.

A Switch.

click 

in my head.

No pain.

Numb.

Spreading.

 walk.

Try to talk.

Tingle.

Tips of the fingers.

panic

Rising panic.

Don’t panic.

Easy to say.

Don’t let them see you

Don’t cry.

What  wrong?

What’s happening?

Leg not working

Arm not working.

Go to the door

Call someone.

Idiot, don’t panic.

Just tingling,

weird feelings of drifting.

Followed by panic.

 Don’t let them see you panic.

The boss, can’t make out a thing she’s saying.

Eventually she has to ask.

‘Are you OK?’

I want to lie. Say ‘yeah Ok.’

I Want the panic to subside.

Let the numbness slip away.

Losing focus, losing feeling, losing hope.

Started with a switch.

click.

Random click, just a click.

Fuck.

Scared now. Have to answer boss.

‘Not feeling great.’

‘What’s the matter?’

Tears come now.

Appraisal over.

Ambulance requested.

Oh God, the fear starts. Can’t hold back the panic.

Losing control, losing hope.

Tears gush

cup of tea.

Blue lights come

The medics barks into a radio.

‘No movement  left arm.’

‘No movement  left leg.’

‘No movement left hand.’

Loaded in ambulance

Blood Pressure 190 over 120.

Sirens.

Casualty

Stroke.

Click.

Random click.

When all the fuss had stopped and a kindly doctor actually told me what was going on, I realised that my life would change forever. At that point I was in a ward with a great many people and all of them quiet. All of my thoughts were dark and I was desperately trying to keep it together. There was a sense of real fear then, bone chilling fear.

I did not know that under four years later I would be on the verge of publishing a novel.  If you had said that to me on the night of the 8th of June 2008, my first in hospital, I would have just cried and said you were mad.

Yesterday I learnt that my first novel Burger Bar Dad will be published as an ebook on the 28th May 2012. So after all the writing, editing, anxiety and telephone calls to my brilliant publisher, the book goes on sale. It has been a terrific adventure and over the next few weeks I will be writing the story of how it all came about. However before we do all that just need to make some acknowledgements….

I would like to thank the following for making Burger Bar Dad a reality: Nick Foot for his honesty and encouragement, Trevor Johnston and Lorraine for the spur to finish. Also I need to mention Carlo Gebbler and my friends at the Fermanagh Creative Writers Group who first gave me the idea I could write well. Then there is Séamas Mac Annaidh who read my first jottings and told me to write more. Also Jay, Connor and the other young people from FUEL

In addition to these I must include Jon Priest as his skills are essential to this success and obviously Mark, Maria, Richard and everyone at M P Publishing, who have been brilliant right from the start of this adventure. There is also a need to thank Tony Viney, Ken Ramsey, Wayne Hardman and Peter Byrne for their help and for laughing at my jokes, as well as Hugh Mannix who never stopped telling me I could do this.   

Last but not least, all thanks to my partner Heather, who made it all happen in the first place.