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.

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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: 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.

Monday Night Reflection: Trying Not To Get Medical

It has been a difficult time; and honestly I am still in a difficult spot. I am sat next to my hospital bed writing on my netbook hoping the rather poor wifi will let me post this. At the same time, I want to reflect in a relevant way about my life, what I have learned, and what is important to me without turning into a rather dull medical saga.

What I am in the middle of is serious. Luckily for me it is not a stroke, and not a TIA either, so my brain hasn’t been damaged by what is happening no less than 4 times a day. Which looks like a stroke, right out the text book. So it scary to be around and its down right terrifying to experience because I am fully conscious and thinking but only able to hear. Before usually slipping unconscious anytime from 5 minutes to an hour after an attack starts.

I am not going to detail the medical stuff, but I’ve been discharged from 2 hospitals being told it’s not a stroke so there is nothing wrong. That is a story that will be told offline in offices with legal people present. Which presents a challenge. Clearly, this has been the majority of my experience coming the day after my Reflection on Logan. 

I could decide to write about an epiphany experience about having my eyes opened to the value and gift of life, but that would be the very worst sort of lie. Deception is not my aim. I already knew that I was a small amount of income away from the perfect dream life, and that that distance was both small and not terribly bothersome. Perfection could wait while I enjoyed the fantastic opportunity I had. My goals have not changed, although I have had some ideas on how to bridge the income gap, they are ideas, and I have made small priority decisions, after all, I have had a lot of time to think. Not being able to move or speak does that. I have evaluated positions I held and decided that there are things I can do differently and opportunities I should not dismiss out of hand.

So I am not radically revamping my blog, I am not changing the direction of my life, in fact, I am more convinced that I am on to a good thing and the goals I have are smart enough to serve me well. My commitment to my craft and project is largely unchanged although I always knew I had to look into my time management as well as being a little more organised so I could get ideas out of my head into a secure parking space quickly and then find them again. Things that I haven’t necessarily made a priority, and I want to use better time management to work on the things I want to be working on, and measure my involvement in fun distractions. 

I will probably get an XBox One too, I always loved Forza and my eldest son plays it as well as other games, so I get a bit of mindless distraction and can get a closer to him (My children from my 1st marriage live with their mother). Which may seem to contradict my commitment to be productive with a weak excuse, but the aim is to do things I enjoy and relax me, and to manage my social media involvement. To date, I have used social media as a distraction and I want to lose that aspect and concentrate on connection and positivity, which is what I love doing.

Which may turn out to the light bulb epiphany moment in my current experience. Making explicit that I love to help others and that having a positive impact is something I find fulfilling and rewarding to the point I chase that drug with all the manic drive of an addict in withdrawal without any conscious acknowledgement that this is the case. And perhaps, even, an element of denial and a desperate maintenance of cynical observation to mask that actually that I care so much that I get hurt and used. 

I don’t want to tell my story just to tell my story, that is pointless. If I tell my story I want it to establish my credentials as someone who was not born extra-ordinary, who has no super-power like talents, and is very much a non-remarkable specimen. If I possess any attributes it would be stubbornness and stupidity. Too stupid to know when I am supposed to be beaten and too stubborn to give up even if I did. A genuinely mixed blessing. However, this is why I want to help others be everything they can be, love life and live a fulfilling life chasing goals, not dreams, goals that make them happy. Growing to be someone they would want to be friends with, want their children to be friends with, and would let their children marry and who they would happily trust to employ and look after all that they hold dear and valuable. 

I am not sure if I am really that person, but the journey to be that person, that’s the stuff of my life and I am convinced is the very best of life. 

As John Connor said, “the future is not set, there is no fate but that we make for ourselves!”

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

Poetry Corner: Happiness

Do I know you? I am not sure I do?

Have I seen you before? Some place near?

You seem familiar? Not a stranger to me.

Who are you? What is your name?

Have you been here before? Do you know me?

There is something about you, what is it?

I feel like I should know you, like a friend from long ago.

I cannot place you, say where or when it was.

I feel I cannot really trust you, that you will leave.

Familiar but fleeting, you go before you arrive at all.

That is you, you make promises you never keep,

You lie, deceive, give nothing and take it all.

Friend to everyone, you deliver to no one.

The most wicked pretender of them all.

Monday Night Reflection: Trumped

Although a week is only seven days long, this last one has felt much longer. It started badly with no progress from meeting my Doctor, and then the new medication to help the pain turned out to not only have side effects in the common category that are worse than the pain, so I am supposed to go back and say. I don’t want to, and I can’t really face another 15 minutes of nothing happening. She won’t prescribe what I want to try and frustratingly I can’t find Actigall for sale. Without the prescription, I cannot get it here, and I would even fly to Europe if I knew I could definitely walk into a pharmacy and get it. To me, it’s utterly mad that I can have something with side effects Pregabalin has, and not the one I want which doesn’t have such nasty possibilities at all. That was a bad start, the pain this week has been up to the in a ball on the bed and blacking out level several times, and the baseline has changed with an extension of the pain to my kidney. The pain is distracting and exhausting, it comes with psychological sides. My bile duct is partially blocked and my liver has started malfunctioning as it cannot rid the body of what it has filtered out, I don’t like the word toxins, but essentially my liver is detoxifying away like it should and cannot get rid of that waste, so the waste products are going back into my blood. Jaundice is the yellow pigment of broken down bilirubin, and at the moment I am not yellow in a noticeable way, but the whites of my eyes are now grey and the corners do show shades of yellowing. Mostly I look a ghostly grey, which for someone half Italian with olive skin is quite an achievement. These waste products affect your brain, in my case at the worst my speech slurs and I have stopped recognising my wife, my short term memory is always affected, and confusion is really common. Added to that my emotional capabilities are altered, from getting really upset at things that are not upsetting and upset at the confusion because I cannot understand a really simple situation, to just a lack of any real ability to cope.

Overall, life has become difficult because while I experience the effects as real, I also know that this is not how I am. Literally, my body and brain are misfiring and I know it, and six months on its getting harder, not easier to deal with. The upside is that there are breaks where I feel a little more like myself and I am doing what I can to hit those windows of clarity, and in between trudge through those tasks I can do. At the same time as having less mental agility, creativity feels like it has tanked, I definitely type worse and my skills in dealing with my attention deficit traits are well below their usual level and while not disordered, it another thing making concentration difficult. It has been a difficult week on a number of levels, when you are not at your best and not really 100% the person you really are it affects personal relationships negatively, those around you are not getting the “you” they know and love, and you are not being that person either, so while I can medicate the pain away and even put myself out of life completely, what is missing from the medical assessment is that my quality of life is deteriorating the more this goes on. I have to hope that the ultrasound on Friday shows something up, at least lately I have a very direct and predictable reaction to food, with pain now getting swelling and heat coming with it, so not only do I feel it, but there is something to see. So the plan is a big meal before I go and provoke it to see if that can speed things along. My wife said that a good outcome would be to be in such a mess at the appointment I got admitted to the different hospital under a different team and something might happen.

On the back of this reflection has been difficult because unlike my plan I haven’t been making notes of the dominant threads of my thinking, and perhaps I haven’t really had any dominant threads to write down; reality is my ideas and thoughts pad has had a tablet on top of it all week and I haven’t used either, nothing much has moved forward at any pace all week on any level. The reality is that terms like behind and ahead do not apply to open-ended endeavours, but I am behind the day to levels of progress I would like to see.

Which is what I do, I accept that everyday is going to have a different one hundred percent because I am not a machine and that achievement has multiple measures. Three hours with a friend may not have any metrics of achievement but is valuable and worthwhile, whereas pushing forward some writing a few thousand words is instantly measurable but may have been the least valuable or worthwhile thing I could have been doing. In my system all tasks have merit, so cooking dinner and editing are not compared one more valuable than the other as absolute items, but rather as contextual assessments. At ten am cooking dinner could be a low priority, of it could be overdue depending on what is being made, and I have also learned to underpromise and over deliver with myself. In fact, the switch to pen and paper has really pushed me along in having realistic expectations. The discipline of having to get my Filofax and write my to-do list means that my actual “have-to-do” list has been culled of wish and would like to items. Everyday my phone would have 15 or more items on its daily to-do, now I have three. This has taken a massive amount of pressure off me and put my expectations firmly back as realistic. Important at any time; perhaps more important when I am less than one hundred percent.

So what has any of that got to do with the title of the reflection? This week has been dominated by the American President Donald Trump, even my little bubble has been made aware. I try hard not to get draw into political debates or discussions mostly because my viewpoint is unpopular with anyone partisan. Essentially both sides will hate me because I see problems and questions and ask them, and I am essentially pessimistic about things changing significantly. I have a dim view of what the collective “people” will do, and when it comes to the UK I am completely fatalistic because history tells a very poor story when it comes to collective action. Our last revolution was to put the Monarch back in power! However, I have let myself be drawn a couple of times into putting my pessimistic assessment of the world and its inhabitants and the response and I have allowed myself to engage with what happened.

When it comes to what people call serious subjects I have a strategy of first avoidance and then secondly detachment. Detachment I achieve by asking questions, this is hugely unpopular as they are things like where did you get that figure from because the three usual respected sources have completely different ones. It goes badly, interestingly the left think I am right and the right think I am left and the centre think I am both depending on where they are. If I think about that at all, then it is really funny. However, I engaged briefly but, rather like my personal circumstances, I felt powerless and rather irrelevant. The hatred, bigotry, things I avoid and find unacceptable were all I could see, and often in people I had considered to be more tolerant and accepting. Scratch the surface and there was not understanding and tolerance but hatred and fear. It was almost crushing. I have been “other” and as such on the wrong end of bigotry and prejudice, perhaps not to the extent of some groups, but being attacked, property vandalised, robbed, denied employment, decent healthcare and housing, I think, count as an introductory experience at the very least. I first experienced these at sixteen, the introduction was young, and prior to that, I had very little engagement with the real world, I had no need to and it was not required. I had decided a career, was chasing that, the rest I guessed would happen in due time. I had worked since thirteen, at seventeen I moved out of my parents on good terms and took things as a flow from there. I learned to cook and clean and manage my little life and get things done. As life expanded I went with it, not sure that was a great approach, it served me well then and its working well now, the patch in the middle where I went all planned did not work out quite so well. This is not saying I don’t plan, I really do, and methodically, I am known for being a lists person, something I have worked hard to put a lid on, however in terms of life direction I was never chasing the house, the car, the status and tangibles. When I did, things didn’t work. Instead, as a youth I sought out relationships and experiences, the difference is that then I was running from something and blotting out the painfulness of reality, now I am focussed on contribution and positivity. Back then it got me from almost no school qualifications to a Masters degree, something must have been working. I chased my dreams, and I let the rest happen along the way, let opportunities open up and took the ones I could and spent no time on ones I couldn’t because they were not opportunities for me, if they were I could take them. I was completely unprepared for the experience, I knew of it, but never expected that I would experience it first hand, it was like abuse, something I defined as impossible for me to experience because I really did not understand it. Experience is a phenomenal teacher.

What has that got to do with politics, it is that once again I feel despair and a desire to detach from the world. It is not a place I like. I have of course,  created a bubble of existence, something my young self would have recognised had I it pointed out. My life then as now is self-contained with a short range focus, being drawn into political discussion and engagement has opened my eyes to the truth that I am not about that level. I am too aware of my irrelevance, and my lack of any wish to do what it takes to be relevant, influential let alone powerful at a level where I could impact on these events. I would rather spend the day helping at a homeless charity/shelter than talk about anything with a politician because one makes a difference the other is just talk. And that is the crux of the matter, everyone is talking, people are making noise with marches and petitions but no action. Ghandi brought the British to their knees with passive resistance not marches and petitions, memes, tweets backed up with angry Facebook posts and shares. That would require the impossible, people to embrace the possibility of short term personal negative circumstances to effect change, however, with enough buy-in even those could be massively negated. The system everyone is so angry about is supported by their actions and as much their inaction, no one is saying, if we don’t engage after a while none of this can happen. In my own life, this has worked and I have stayed legal and within my rights of the situation, knowledge became my weapon, knowing where I stood meant I knew how to be passive in the most destructive way. I never moaned or bitched, I did something. The irony may be that as a student I was very close to the locus of power and did have influence, largely because I was completely uninterested in the exercise of power or control. I had the ear of people at the top of the student body, but no one knew, I never bragged about it, it was nice to be on the inside and know things, but they didn’t change my life or what I was doing. I had no desire to be a wheel in the political machine, yet there I was discussing those very things. I got in that position by proposing passive resistance, in that case doing what the University wanted the student body to do in the full knowledge that the en-masse adoption of the system would crush it and they would have to abandon it or change it to a working model, either being the outcome the Student’s Union required and wanted. It worked, and quicker than anyone expected, plus had bonus positives for the Student body that no one could have seen coming. The door opened, but I didn’t want anything out of it, I did learn how politics works at that level, saw the people who wanted to be part of it and how to get ahead. Hence my disengagement with politics and politicians. It is all a sham of self-interest and ego. Perhaps what I am driving towards is the mindset of “if you cannot change the situation, change how you think about the situation.

So my despair is based on engagement and understanding. I have then, by venturing out of my bubble found that I want to stay in it and cultivate it. Of course, I am affected by the world and what happens, but I have only got the option of awareness, preparation and reaction. What is coming, is coming and I am best being prepared and ready, or at the very least realising I am powerless and be ready to rebuild and pick up the pieces. Which is what last week was all about, close focus and the exclusion of worry about the things I cannot control or influence. As a coach once said, “control the controllables”. Right now I have situations which are not controllable, I am not driving the bus, not sure I even wanted on the bus, but here I am, and it will stop where it stops, and I will get off when I am allowed to get off, although if I don’t try I won’t ever get of off course.

I hurt, life has so many good elements that I have to be about not letting the immediate physical obscure that. Focus on what I can do, what I can control, cope as best I can with the rest, which is how I approach life and politics. Do I agree with what is happening or think it is right, no. Do I think good decisions are being made, no. Do I think my life is going to be made a lot harder and more difficult, definitely. Changes are coming, the best I can do is expect the worst, hope for the best and love my way through counting those blessings I do have.