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.

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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.

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: 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

Thinking Out Loud : Swimming Gala

It is not that often I like to go back to my childhood and specific incidents within it. I feel that they are done with and that now I have largely accepted what was faulty with it and done my best to move on and be practical in dealing with the here and now. I am unlikely to end up in the same situation now I am an adult and so often there is limited information that I can directly apply.

However, the Butlins’ swimming gala is an event that maintains relevance in my adult life. As a kid I loved swimming, and looking back I was actually not that bad either, it is entirely possible I could have been quite good. I never found out because my mother never wanted what would have gone with my success. I swam at the Harrow and Wealdstone Club, but I never made it to the group which did competitions. Eventually unable to move up I quit. My parents let me, and I later found out, my mother had asked that I not be put up so I would not become eligible for full coaching with the early starts and travel to comps all over the country that could involve. They obliged. I was allowed to enter the club gala by way of the qualification process. You swam in your chosen stroke and distance and if you set a time you were in. Of course, it was all racing group kids. I had a go and I was in. On the night I arrived, got changed and sat and waited till my race. As an adult, I realise that all the competitors were warming up in a pool. They appeared and it was my heat; to go to the next round all I knew was that it was first 2 and then the fastest 2 losers after that. No idea what was going on, I got ready for the backstroke, I had practised a little on racing turns and dives, but I hadn’t had any coaching. In fact, it was a surprise that I was there.

I was third in my heat and I went home. I got changed alone, no one said a word, no one else in the place. I went home, no special tea. Nothing changed and I went to school the next day. The only recognition was the older kid who swam for the club saying didn’t expect to see you last night. Later I would find out I was the third fastest loser as well as 3rd in my heat, missing both by the usual fractions. This was years later and I had given up swimming by then. I was a loser, I didn’t get past the first round, I had been stupid to think any different. Of course as an adult I realise that I was 17th out of 56, and the only one who hadn’t been coached to race, and that it was quite possible that I had been faster than some of those had they been in slower heats as I had no idea of the standard of who I was against.

So I guess I was an okay swimmer really. My parents went to this holiday camp, I can remember it wasn’t much of a holiday, I was forced to do kids club stuff, which as the fat kid I hated, it was nothing I was good at. The highlight was getting a BMX for a morning (all my pocket money to hire it) and having a go on the ramps they had. Part of the week was swimming; I was looking forward to it because at least I could swim. The day came and as per usual we were split into teams, and then horror of horrors, I was given butterfly because I had made the mistake of saying I could do all the strokes. I was a backstroker, that was my only chance of not being embarrassed, I was in my trunks by the pool, the parents were there, I wanted to run, but I felt entirely trapped. It was only Wednesday, so I couldn’t run because there was the rest of the week to survive, and of course, I couldn’t embarrass my parents either, that wasn’t worth it.

The time came, we all trotted out for the one length butterfly race, completely exposed as the fat kid I looked around at the athletic bodies of every kid around me. I am sure they weren’t all athletic but they definitely were not fat like me. I guessed we would be gone in the water and I could sneak out while the winners got all the attention. I tried not to notice them limber up and did everything I could to try not to draw attention to myself. I just looked down my lane at the goal, the end, over, sneak off as there was a break after for lunch. I dived and I swam for my life, in the water all I could do was concentrate on my worst stroke, just absorbed in the movement until the wall, it was over. I immediately went to get out the pool fast, when I looked back. The lane either side of me was just over half way. In fact, no one was even close. I had beaten the entire field by the best part of 12.5meters or half a length of 25  metres in that pool. I got out, got a certificate, some stickers and my mum took a photo.

That was it, I went for lunch, the well done lasted from the pool to lunchtime and I put my certificate away and the stickers with it. The holiday continued. Nothing changed, it wasn’t mentioned, I got my well done, there was a photo, that was it. For many years I have looked at that photo of the beaming proud “fat kid” who had finally won something. I saw his top abdominal muscles, his shoulders developed from the thousands of lengths, his legs chunky from the miles cycling to and from the local pool to swim for hours in peace alone. I didn’t see a fat kid; I realise no one saw a fat kid, I realise the looks on those parents was not at the fat kid who was woefully out of his depth but at the swimmer who was about to win by a mile and disappoint their child. To me those stares were telling me I shouldn’t be there, and I was right, I had no right being in a holiday camp swimming gala, I looked like a competitive swimmer, I thought it was because I was the fat one.

My swimming life was instructive as a child because it taught me that I was a loser and that winning didn’t change anything. Success didn’t change life, I had a job, I had 2 jobs, I paid keep, I did well at school, so I should, I won something, it was a nothing event at nowhere, I failed at the Club competition, what did I expect? The looks of the parents confirmed that I was fat too. I hated school, swimming was not the way out, success in the world was not the route to happiness either. I grew up wanting to hear the words “well done”, wanting a bit of fuss and wanting my success to change something, even it that was just picking what I had for tea.

As an adult, I ended up in a relationship just like that of my childhood and so I never strove with everything I had to be a success because there would always be people better than me, and any temporary win would not change the fact that I was a loser and not a successful person. The belief that I was the person I had been told I was and was treated like informed how I made my way through life. At work, I would work hard and try to do well, and find myself sacked the first mistake I made. It did not take long for me to try and be in the middle unnoticed. At school I worked just hard enough to stay out of big trouble, I wanted to be somewhere else, the teachers made it clear I wasn’t good at school stuff and the odd time I poured all I had into something it came back with the same grades as when I didn’t. Leave fatty alone was my life. I had a great overhand right that helped with the latter.

As an adult I was, for so many years, that little boy trying to get by, trying to be happy without someone noticing it. Being happy only lasted till someone noticed and then it would be taken away. Success was something you kept to yourself, it was only yours, no one cared, no one even wanted to know. It wasn’t healthy. I know now how terribly debilitating it all was, it was no wonder I was plagued by crippling depression and that in an abusive relationship anxiety came to paralyse me. Now I preach that other people’s picture of you is only real if you make it that way, that you celebrate success and learn that you can succeed and to not accept external definitions or measures of what success is. You can set a world record and come third, see the achievement for what it is, not the definition someone else gives it.

So I look at those swimming Galas and learn; I did what was never expected of me, I was able to be the real deal when I had no encouragement, no coaching, no help and definite obstruction so why can I not be the real deal now. I may not be the best in the world, but someone will be and if I never aim to be I never stand a chance of being that someone. Most of all I look at that little boy and I realise that he was petrified, he was terrified, he felt like running away every second till that whistle blew to start those races, and that while he felt like he did not belong, that he was an alien in the land of others, that little boy stood there anyway. And more than that, that frightened little boy stepped up and did good, he did really good.