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.

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.

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.

Monday Night Reflection: Just Waiting on the Day

It seems like a lifetime ago that I sat down to write a reflection making sure I wasn’t being too focussed on the latest and the loudest, that I was looking for balance and feeling the need to avoid undue triumphalism because things had been positive for a good while and I had things pointing in the right direction.
I was hesitant because I was wary that the good can so quickly come crashing down, and because I did not want to gloss over the challenges of a very ordinary life and that I am not a particularly extraordinary person doing anything particularly unusual in the grand scheme of things. I want to inspire, if I inspire at all not because I am outstanding but because I am just like everyone else and I am trying in the face of the same stuff as everyone to keep on being better at life and being positive and helping others have a happy time and love the life they have, whatever that life is, and not some bullshit entrepreneur, internet guru, beach crap. Which, to me looks like hell anyway.

I guess I was right to be reticent, it crashed down, and I was not even up that high really, but down it came anyway. And I won’t lie, I am low, really low, not quite suicidal low, but I can’t say I haven’t considered it, I have, it wouldn’t solve anything so, pretty pointless as a solution. It isn’t worth the details, because people insist on telling me how far I have come, and yes, this true. What they miss is this not my first set back, or my second, this is 2017 and I have been essentially coming back from something big since June 2011, that includes a heart attack that I was just starting to feel was behind me and getting to feel I had some fitness returning.

I am broken mentally, it’s been 6 years of fighting, not for excellence, but for a shot at normality. I lost everything, and my second chance just got ripped away too. As coach DAmato says, it’s all about the six inches in front of my face, inch by inch, step by step because that is the difference between living and dying, but in the words of Coldplay, Nobody, said it would be easy, but nobody said it would be this hard.

Dear Diary 24th April 2017: I had a Plan

Day one of getting things back to normal, well I guess it really was back to normal. My wife drove off to work and I decided to hit an errand early before I got my telephone appointment with my doctor at 10:30am.

Sort of odd having the Doctor have reception ring me up and make a telephone appointment, but it has happened and the plan was to go out and get the out of the house stuff done before. Simple, normal.

As it happens, devastating normal, the car battery is flat, the rear tyre is functionally flat, and the steering feels like a truck from 1920 heavy.

The last couple of months have been expensive car wise with our cars breaking terminally leaving us with the cheap run about and then us buying a super cheap 2nd to get my wife to work that then needed fixing because its Main Dealer Service History included that Main Dealer not doing the work properly and nearly breaking the engine.

Day one and already things are messed about by 35mins into the day, which means, yep, normal for sure!