Poetry Corner: Monday Does Not Care

The morning our beautiful mistress, our most heartless master,

Beckons us to our dream,

Cares not of triumph nor disaster.

 

The sun rises and sets indifferent to them all,

The dust it gathers before even the first night has come to fall.

Agony and joy, the cheers, imposters call.

 

It never cared about the journey,

Time never cared about the battle,

Time has on carried regardless, it never cared at all.

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Dear Diary – After the Hiatus

From Monday 3pm to Friday 3pm stuck in Hospital doing my best not to die of boredom, with so much empty space.

The reality was I shut down. Just to be able to cope I had to not think, no internalise, not be in the moment, not fully present or engaged, and not full focused at all on the future, the past or the present to detach myself from reality and the enforced artificial rules of the situation and my disempowerment.

I survived, the week was an unpleasant dark shadow over my life, holding the time before it in a strange semi-suspense because I knew at some point, coming at short notice, everything had to park for a week. Sensibly, nothing unparkable could be started. Not quite on hold, but really going forward fully either.

Now I am out, I am of course liberated, I am free to do whatever it was that I was unable to do before. Which was?

That is the question, in March so much of what I was doing got ripped away, I hate the melodramatic sound of that. But a few months down the line, it feels more that way now because back then there was the promise that certain things were temporary, that the losses inflicted would be short lived.

Reality has dawned; and I am living with and adjusting to, the new landscape, the shifting sand of what abilities retained, and the extent of skills lost. Those projects are on hold while I have to go and re-learn skills that I need in life. From fine motor skills and co-ordination to emotional intelligence and resilience or understanding, it feels like everything has taken some sort of damage. It may not be impossible, but it is going to take some time.

Of course, I have sabotaged self. My remarkable apparent comeback at the end of May and my stubborn refusal to quit doing whatever I can has led people to think I am ok, after all, here I am living life. That is what you see.

How could they know, the physical pain, the emotional difficulty, the depression, the despair, the frustration of knowing you once could and now can’t; of course they have no idea. And, really, now words can tell the story of being trapped knowing its gone and you might not get that back, or the frustration of being expected to operate on a level you can no longer reach. There is no way to say, this life, the one I was breezing through with ease, no it exhausts me before midday, those things that I could cope with and a hundred more on top, I am crushed by half of them or less, and that finger tapping sounds like you are taking a sledgehammer to my head, but its ok.

The break is over, it is time to move on, step by small step, practice, fail, get up, fall over, get up, make a mess, clean up, carry on, and so on, and so on, every day, every day trying, just trying and hoping to work a little way back, a little way on the dream, and little bit better than yesterday.

Poetry Corner – The Real Me

Sometimes you forget
Sometimes you believe
Sometimes you don’t pretend
You are not who you are
Not make believe or fantasy

You believe the empty words
The things they say because they should
Because they should be kind
They are the encouraging sort

Some days I forget they expect me to fail
Some days I believe their belief is real
Some days I am not pretending, it’s not an act

But then I see what is real
And I carry on, no big deal

Monday Night Reflection – Getting Philosophical

I have resisted for a while, but lately, it has been really very difficult not to turn very simple questions into mini or maybe not so mini motivational speeches about what is really important in life.

What I am saying isn’t new to me, and really is not some sort of amazing light bulb epiphany at all, I have known it for a quite a while. It is the coming together of threads that have been around for a while, so this is not a new fabric that I am weaving. This behaviour has left me wondering, why now? Clearly, something has to have changed for my behaviour to have changed in what is a not terribly subtle way.

I have exchanged some intellectual knowledge for experience recently; the experience did not change the intellectual knowledge, rather confirmed it with field data. However, in terms of what was important, and what people who knew the days ahead would be days not months or years, considered important, I already had good field data, so my own, not sure if I will see tomorrow experience did not cause a change even if it added my own data to the set.

I am also not sure any new data has been added, or that anything new was required for me to realise the unique and genuinely blessed situation in which I currently reside. So while I face challenges, the place I face them from is unique for me, and objectively one of the better places to be. I am also aware or the privileges and blessings or my situation and the experiences that I have had on my way here, and how in facing any challenge I am equipped in ways other people are not so fortunate to be. This is not new, and not to do down my own situation, which is not great, there are definitely people worse off, and a lot of worse situations to be in facing what I face.

So I am not sure what has happened, it’s been a while since my birthday, no one close to me has died, although yes people have passed away in my world, and their loss did sadden me to a tear or two, especially those I knew, perhaps it is that. But in general, there has been no change bar the passing of time from a week or a couple of weeks ago when I was not so introspective nor so philosophical.

Which has been my week, rather mundane tasks of sorting out my workspace and getting rid of things that should have been gone long ago, having bad days where nothing happened, and trying to gently sketch out the best way forward and what done looks like now that my personal landscape has changed. Things are definitely slower and taking more time, however, I am not convinced that is a bad change, and I my enthusiasm has changed in quality.

My business head knows that the best business makes money when the owner is not working as well as when the business is working, and it also knows that a lot of markets are very saturated with awesome unique products from very talented people. Add to that, skills in new media promotion and things that I am not sure I could do even if I wanted to do them, which I am not sure I do, I am having to work out a plan, strategy and even define purpose carefully. Perhaps learning from my previous, not outright failure, but definitely not success either enterprise and the things I didn’t do with that business, and how I massively overextended myself and my workload in that venture.

I still have no idea why these inputs have made me so philosophical.

Monday Night Reflection – Success and Failure

I planned to take a week off after competing and it ended up being a very good idea. The competition when exceptionally well and I secured my qualification for the British Finals as I set out to do, came back healthy and am now on course to go from the British Finals to the World Championships and be considered a contender.

That is the success, and I am not going to down play that success, I am still stunned to have this amazing opportunity at all, let alone after all that has happened so far this year. The weekend was successful with many improvements in self-management and performance management across the whole time which point towards a successful British performance and importantly that this will open up not just the opportunity to represent Britain at world level but also to be a legitimate podium contender. It is impossible to convey how surreal and odd it feels to be writing that about myself, and how I am proud of what I have done, but at the same time it really does not feel very real so I am not really that proud because I don’t feel I have done that much. Although, as I am told pretty regularly, to have the opportunity only 6 weeks after lying in a hospital with paralysis, its one hell of a comeback.

However, when I got home it had been 8 days without an attack, and while I made it through the weekend out the house when I got in I sat on the sofa and I went out. The full monty, this was a high register attack, lasting well over half an hour with the loss of speech, tone, and with paralysis. This would have been a hospital admission if we did not already know nothing would happen. I was devastated. I knew what was coming and it did, the hangover effects, this time it included the slightly hilarious not being able remember how to write a question mark.

By Wednesday most of the glitchyness was gone, most of my understanding and cognition was back, my emotional fragility was on the way out, and my motor skills were returning, left behind were a headache and dizziness. Its now 8 days later, and several smaller attacks later as well and I am at best 80% back to where I was 6pm on that Sunday night.

That was the failure. It probably feels like a bigger set back than it really is, but it is a real setback. I did have plans for the week after half term and so far to day I have lost most of the morning because I passed out, and I cant drive till we are sure I am safe which along with my motor skills and paralysis changes the athletic endeavour part of my life significantly. But I am still embarking on this part of my personal, professional and life journey back from where I really wanted to be. Even this reflection is not the reflection I would have wanted to be writing.

This is Monday, last week pushed me back, but I have achievement locked, and I have plans to grow my business project slowly but surely, I have another small scale little income project running and that can run its life and earn its little bit while it burns too, and I am busy taking the steps I can to get from where I am to where I want to be accepting they are smaller than I may have wanted or anticipated but that a step is a step nonetheless and I can build from where I am.

My plans have not changed, they may just take a little longer and happen a little more slowly.

Monday Night Reflection: Slow Boat or Express Train

I do make a point of writing my Monday Night Reflection as close to real time as possible and today is a case in point. Today I got news that following my twenty minute EEG, which was, of course, a downgrade from the ambulatory EEG originally ordered, I have after an administrative delay, being booked for a three-day ambulatory EEG after all. This suggests that the short EEG was not good enough to show me the door.

This is significant because I have felt that my recovery has been very much more slow boat than express train and that I have significant skills deficits that are not really coming back in the area of motor skills, something showing up in my typing error statistics which are up over 500%, if ever there was a measure that a skill was a bit affected. Although thanks to Grammarly, it would appear my writing vocabulary is largely unaffected, those who know me have noted that I still lisp, slur, stammer and have vocal issues previously not present and that my memory defects are noticeable, especially when I get tired.

So while I am no fan of a reflection heavily medical in focus, it is difficult because I am two people. The person I can talk about and the person I can not talk about too much; and at this present moment the person I can not talk about a lot is driving and in charge, it is a very important week, it is probably the most important week of my year in that life. This upcoming weekend being the most important weekend of the year for that life; without melodrama what happens will determine the rest of my year, where I go, what I do. So, rather unsurprisingly, the combination of my motor skill issues which massively impact that life, my problems writing, which are my other life, and my recovery which is all my life have given me what is, in the day to day, a very quiet life as I have had an extraordinary narrow focus as we as a team, been focussed on this one goal and getting through it.

It is partly frustrating that I have to separate lives, but it is a necessity, after all, I lost the battle for public identity to my abuser and this blog is for all those who like me lost that battle and have to find their voice. Because, I made it back, in that life although I am a long way from where I was, I am still on course to make my year-end goal, and I am still processing that. It is hard to reflect on anything else, it is dominating my physical and mental landscape that I left hospital first week in April will partial paralysis and speech issues not knowing when the next attack would be, the longest I have gone is 6 days without any sort of attack, yet despite all the issues and challenges, I am 6 days from being a competitive athlete again; taking my first step on the road to a World Championships where I am likely to be considered a legitimate contender.

How do you think about anything else, whatever challenges I face today, and I hurt, and I ache and my motor skills are awful, my coordination is woeful, the fact that is a sentence that is possible does not seem like it is real life. Yet, it’s my life, and I could very possibly be writing a Hollywood ending in my own little life.

So apologies, it’s not about Mr Mouse, it’s about Me, but not about me because my abuser is out there and she would ruin everything with her lies, so I don’t want fame or to be famous, so it’s not a big sport that gets into newspapers or internet headlines. The Mouse and I will tell our story together because it is our journey together, from the abuse of childhood and being held back for years by first an abusive parent and then abusive wife who would both sabotage or make me give up my dreams, telling me I was selfish to the wife who did more than just give permission, but who did what it took to put their wrong right.

Success may be a slow boat, it can be an express train, but it is never our own story, it takes people to help us, support us, open doors, believe in us and hold us up; every cliche about teamwork making the dream work is made real every time we come together and help someone even just a little bit.

After this week I am taking some time off everything, and I have been working on some poems to publish, I have to photography trips planned and my car will hopefully be fixed soon so I can make those, so gradually I am getting back to my normal. While hopefully, I can draw my line and Mr Mouse can create again; Mr Mouse is committed to a book called Squeeking At the Top of My Voice sometime late in 2018, I am really excited at what he has planned.

Dear Diary: 16th May 17 Just?

Still nothing.

Yes, lots of progress but not back to where I can do what I used to do

I have to accept that in terms of medical stuff I am ahead of the curve but in terms of me I am nowhere, in the void.

Even writing that I struggle to write is difficult to write

Monday Night Reflection: Not Famous

I have tried to avoid deep introspection and life reassessment, it’s a bit cheesy, but I have been very low, and having discovered that on top of my existing medical journey I picked up a kidney infection (probably in my duplex kidney) I did manage to hit a very low and rather depressed point.

Thing is, I started noticing something, part of what had driven me to change my profession was that people in that field were asking what I had done. When I started it was all about technical ability, proficiency, results and knowledge, and now it is all about how famous you are and how famous the people you work with are. It is a fame game. More and more, I was thinking about contributing and the barrier to entry was how famous are you or how famous are the people you know.

It was last night, sat with my wife and stepson watching Disney Cars, my wife had not seen it and I am excited to see Disney Cars 3 in June, so we sat and were watching it together, he joined us and we had a really great evening and even grabbed a small takeaway tea for ease. It was a great end to what was a really enjoyable weekend. It was getting ready for bed that I had the light bulb moment, because like I do, and many of us do, I had a quick scroll through Instagram and I follow a few “successful” people, and they had worked. They seemed super happy that they had found time to be “productive”.

No knock on them, but that would not have made me happy, the thought of what they had done made me sad. My weekend I had sorted the exhaust on my car with a friend, trained, spoke with a couple of friends, one was a bit overdue and was really nice to catch up too, and watched a lot of MotoGP, spruced up the house as we have been doing for years and probably will be doing for years, and connected friendships. Most of my time was simply,  being, productivity and metrics were the furthest things from my mind, in fact, I remember my son and wife looking at me somewhat aghast as my phone vibrated through the film and I didn’t even flip it over despite having seen the film many times before. Why, I was enjoying the moment of being with them, nothing I do is that critical it can’t wait an hour or two despite what some people thing. And it is Sunday, and it’s a day none of us has to work so I make sure I keep it free to have with those I love.

I don’t want to be famous, and I don’t want that success. Travelling to do this and do that and the lifestyles that the successful have in what I am good at are just not for me. I guess I am good at the wrong things. You can take your adoring crowds, that’s cool, I will wake up to the eyes of the woman who loves me win or lose, succeed or fail, the woman who picked up and held my hand when I couldn’t move it myself, the woman who has seen me at rock bottom, and who chose to sit down next to me and just wait till I was ready.

It is not that I don’t want success, it’s that I won’t drop mine chasing someone else’s dream.

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?

Monday Night Reflection: Moving Forward?

This has been a difficult week. I wrote my last reflection sat next to a hospital bed, and here I am back at my desk, that bed does not feel a lifetime ago. Quite the reverse, hospital feels far too close, and I am finding it difficult to impossible to move forward or get away from that medical experience.

I have been blessed by lots of support and genuine concern for my welfare which has really been humbling, and talking to those people and keeping them updated with how I am doing has been a great reminder of the great people I have around me. There was also the complication that I left hospital without a diagnosis or even an explanation of what had been happening, just follow up, which would rule out certain options.

It was frustrating, partly because I had nothing to tell people, partly because I had no treatment and no prospect of treatment, but mostly because Doctors were not listening to me, and not taking what had happened seriously: even to the point I was told “I am not concerned because this is nothing serious”. Now this may be a terrible attempt at being reassuring but when you have been ambulanced in straight to resuscitation twice and your wife was told to prepare herself for you having had a major stroke once, and she has been prepared by the ambulance telephone operator to give you CPR and asked if there is a defibrillator handy it is anything but helpful.

The medical experience has been all of my experience, and even now I have seen a GP and gotten on a treatment for the most likely diagnosis of hemiplegic migraine, and am able to tell people a more positive set of outcomes, it is still difficult to move forward. I still have to be supervised, and my return to a normal life is what an employer would call “a staged return” to normality, which is tremendously difficult.

Everything in life is starting from the beginning, my business project is stopped, my writing projects stopped, everything stopped, my office is a mess, my desk is a mess. More than that my confidence is in pieces, and I am having understandable trouble sleeping, while I am exhausted at very low levels of activity. The road to recovery is a cliché phrase, but it is also a very accurate description of the process. A process I have to take carefully because although we have a great working theory, we have no trigger and no explanation as to why this rare form of migraine has started in my forties rather than the average age of onset of 17. I am rather old for this to have started.

It is really difficult not to over-think and over-analyse every feeling, twinge, and the rather nagging headache that comes and never quite goes. Plus, there is the reality that some symptoms can take a few weeks to wear off, in my case the most obvious one is a stammer that I never used to have. A return to normal is also a little more difficult because at the moment I have a weekly trip to a not local hospital for another issue identified to be treated, and quite a few extra pills that more than likely I will have to take for life now part of my morning routine as a little reminder of my fragility.

I am not taking this as negative, it is great that I have had potentially serious health issues addressed before they got that way, and it is awesome to have a GP who works with me and who steps up when other medical professionals have let me down. I have had lots of scans and test that have revealed I am very healthy internally and have raised things that can be addressed in plenty of time.

None of which has moved me psychologically away from my hospital bed, mentally I am still a patient. Creatively I am literally an empty space, writing about my experience is dull and lifeless, there is nothing there, I cannot create from it, and I feel like my brain isn’t back yet, it’s a lot of locked doors and I have lost the keys. Writing this reflection was a challenge because I only had one subject to write about, and I didn’t want to write about it. The reflective framework suggests that I use the experience to inform future behaviour or practice, and even am able to identify what I could do differently. I cannot see anything I can do differently when I was a passenger taken for a ride by what was happening, sometimes very literally.

As I wrote last week, I cannot bring myself to take the easy route of claiming some epiphany about the wonderful gift of life and how precious I have realised it is after what has happened, the truth is I haven’t had that sort of light-bulb revelation at all. As time as has passed, I have started to see how this three weeks has changed or could change both my wife and me. For her, I see real positives when she realises how awesome she was, not in that terribly overused, found strength she never knew she had way, because I am pretty sure she knew she could be phenomenally strong, a reminder or a revelation of the extent of that strength, I will give you that. No, it’s deeper, she was capable, she made great decisions, and although she was worried beyond my comprehension she managed it, didn’t ignore it suppress it but acted appropriately and constructively through an incredibly difficult and challenging situation. I hope she walks away from this with her confidence in her capabilities raised and her assessment of her abilities and judgement moved up closer to the level where the are and she stops underestimating them a little more.

For me, probably not what people would expect. I realised how close I am to having a perfect life, and that sadly, money is what it is going to take. I have an amazing life, but it is insecure, money will make it secure and add stability and certainty to it. That is not so I can take more risks or necessarily have more material stuff, I have way too much stuff and there really isn’t anything I need, maybe some cool enhancements, but that’s always going to be so. No, it’s a case of making life secure, and so that I can compete and we can have a holiday so that we can go back to having a car each. I’ve realised I need to make my dream less precarious.

What I do not know, where I really do need the epiphany is the how.