Thinking Out Loud: I used to try really hard

It seems a very long time ago that I downloaded a blog planner and I was reading pages and pages on how to create content that would engage readers and grow an audience.

I would be carefully timetabling days so I could create content, especially my Monday Night Reflection, which was so very dear to me, that would be valuable and well thought out. Monday Night Reflections were particularly special because I was letting the blogosphere into my thoughts and sharing genuinely hoping that I was helping create something that would be of value to someone.

I knew that staying anonymous would limit way in which I could grow, but I tried my best to use strategies that would create an audience and some organic traction because I wanted engagement, my heartfelt wish was that someone wouldn’t hurt like I did, or would see that, hurting was okay, and that there was through it to get to.

Thing’s changed, and I thought perhaps I could document overcoming the attacks of what are most likely hemiplegic migraine, perhaps documenting survival in a different way, the challenge of having my creative ability taken, robbed even and learning, relearning, sometime learning daily to do something that had been a joy and such a big part of my day would be something I could share.

I found sharing impossible, there was nothing to share, it was blank, you just write rubbish and bin it, till its not rubbish and you feel comfortable sharing what you have. My failed attempts are not something I keep, like falling of a cycle, not something you really need to post for the world to see, failed is failed.

Thing is, you have stats, good old Word Press, and there they are not changing, there I was dedicated as an author to my craft planning and working to create, and there I was dead in the water, lost at sea, struggling to express myself at all.

I care, of course I do, every one who creates cares, I want people to engage, everyone with a blog is really saying look at me, I am no exception, what I mean to say is, I am here creating, I hope you like it, I am sorry if its haphazard, random, without focus or purpose, that’s my life right now, that’s is me, that is my blog and my creativity, I gave the structure thing a go, I couldn’t hack it, it didn’t fit, I am too old, and just a little bit too grumpy to wear things I don’t like.

Advertisements

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.

Dear Diary: You Can Never Hide

One of the great things about life is we can hide, work, family, hobbies, athletic endeavour combinations of those afford us wonderful opportunities to hide away from reality.

While we get away and pursue some noble and worthwhile goal to the applause of our peers, we can hide from facing something bigger, and more frightening than the challenge we tackle for the world to see.

But when the goal is achieved, the project is over, we instantly seek the next one to avoid the chasm and void of light where we know we face the truth we have been hiding from all the time, so we stay in the darkness calling light.

How long can we pull the trick of self-delusion, do we pull it at all?

Thinking Out Loud: Staring at the Future

It has taken me a long time to face writing this: recently an infection put me back in hospital. Opposite someone with hemiplegic migraines.

They were under a regional specialist centre with a proper specialist consultant and were under a treatment team with multiple therapies. They were exactly where I am supposed to want to be, they followed the advice of every attack getting admitted.

It was horrific. The man was a shell, the ward was noisy and chaotic, and they had no idea how to treat him, worse, they were random and haphazard with his pain treatment, most of the time he curled facemask on, earphones in pain trying to make it through the day to his release.

He saw no treatment, he was pushing his family away as he failed to cope with the emotional effects of attacks, and each admission robbed him of days and weeks of his life, you could see him imprisoned by his “disease” and crippled by doing exactly what he was told to do. Exactly what I am supposed to do.
We spoke, he could not believe that my attacks were both longer and more debilitating, that I had no support in place, and that I was not being admitted like he was each attack. His disbelief crashed head first into the fact that, while we shared symptoms and experience, I had carried on doing life in direct defiance of medical advice and was doing well, and he, doing what he had been told, further down the road than me, was now virtually crippled and imprisoned by his condition.

We spoke only that afternoon, he left. I doubt he will change, he is embedded in being a patient and invested in the model where he would be saved by modern medicine. I don’t believe in white knights on unicorn’s, as a child I learned very early that it doesn’t matter how loud or how long you cry, how much it hurts, how bad it gets no one is coming to save you.

Perhaps then, out of the damage of those abuse years has come a useful toolkit for journey ahead

Dear Diary – It’s​ All About Where You Look

If you look at my blog then I really haven’t been up to much at all. And, in a way I haven’t.

The truth is I have made a conscious effort to stay away from computers and technology much more. Although I confess to being an Instagram and Spotify person, those two I really like and are great unwinding tools for me, the rest I have tried to just leave alone. I have been successful, pretty much too.

I went away to Wales, and took some pictures which I will edit and share because it a beautiful place, but it reminded me that there is the world outside, and getting sick and all that involved, did eventually, lead to me making adjustments to how I am living life and what is taking priority. As I mentioned, this summer is an opportunity in my competitive life, which this blog, and, in fact, no blog, is about, that may never come round again, and I am lucky to have the opportunity to devote a lot of time, effort and energy to that. Right, now, somehow, it is entirely possible, and this shocks me to contemplate, I am actually one of the better competitors, in my category, in the country.

It really depends where you look, creatively, my office is still very much a declutter and dejunk project. I really have too much in too small a space, and I could not effectively do what I wanted to do in the space I had, and it was really not working. So I am committed to finally, sorting that aspect of my creative life out, and using what is a big space effectively towards a goal, and yes I do have a goal. But that is taking time because it is not a priority.

Also, I am learning skills and losing some of the fears that my “illness”/neurological issues have created and am getting the confidence to slowly embark on ventures and ideas again, but I know this is going to be a very very slow process, both because its not something I can put in number one spot immediately, and because I just do not have the energy levels I had before to devote to anything. And, also wisdom as taught me that cakes bake better on the right heat for the right time, and rushing never makes for a good final product.

So, unlike other Dear Diary’s this more of an update, check in, where i am, which is here, doing my thing, trying to do life and tackle the challenges this blog has talked about, and which are still very real and present, while focussing on the opportunity I have in my competitive life, and yearning a little for my creative Mouse to get out and scurry soon

Monday Night Reflection: Back to Normal

That is a lie, of course, there is no back to normal. Not in a bad way, but I am not going back. I had decided to move on before any of this dropped on me, I had changed direction, and normal was a fluid state of moving forward towards something new and different.

Normal was not a set routine or structure, I was developing a new business venture, I was practicing my skills, I was growing myself and exploring directions and possibilities to see what and what not plausible or possible, what could be developed for money and what was best left as artistic endeavour for artistic endeavour’s sake. My business was being grown, not pushed, I was learning from past mistakes, and the pace was consciously, in fact very deliberately slow. Each step was small, and consolidated, assessed and embedded, decisions taken carefully, investments very circumspectly undertaken indeed. I was very keen to be in absolutely no rush to spend money, time, or unnecessary effort in a fruitless endeavour. I was keenly aware that every resource I had was very limited and that my project was one I wanted to grow properly, healthily and strong in that organic way of a business finding its rightful place.

None of that has really changed. I have, I have made no secret that my skills and abilities have been affected, and I am relearning things. The timetable has been set back, and along with that, my blog has had to change from what I really wanted to be doing at this point in time and is not really what I wanted to be sharing either. However, my business, my blog, and my personal life are still there, still being developed and I am still working on each of my goals.

I have had a setback, and in the real sense of that, I am working from behind where I was, however, I am still working slowly, and that, ultimately is all that matters.

So while, there may never be, a back to normal, there is a normal service, and that is coming back.

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: 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.

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?