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: 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?

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.

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

Monday Night Reflection: Logan

Apologies to those who haven’t seen the film, this will no doubt have a spoiler in it. This is not a film review, instead, Logan, like other fictional works became a mirror in which I could see myself more clearly. Great writing, great story telling, whatever the medium talks intimately to its audience, the very best covertly seduces the audience by first entertaining, and by that means lowers their defences so that the piece can speak to those who are willing to listen.

Some films and works are overt in their message, there are self-consciously preaching and reaching for a reaction and response. Usually they achieve their goal of an Oscar nomination or two, or perhaps the equivalent “art-house” recognition that they were born to seek. However, in my mind, the greatest achievement is to talk and embed a thought in something covertly from the Christian allegory of Wall-E to the crushing grief and loss woven into the fabric of Rocky Balboa, such writing is able to stop us dead in our tracks and cut through all our defences precisely because it hides in plain sight while we sought distraction from our lives and struggles.

And so we meet Logan, the once indestructible Logan, the anti-hero for the ages, moody and broody, reluctant but the first into battle for the right cause, driving a Limo at a 4th rate stripper bar. This Logan has a limp, is clearly old and sick. Our Hero has fallen. When we met Logan he was drinking and fighting in a bar for money, running away, this Logan is working to support and care for his old friend Charles Xavier, drinking to hide from the past. The once brilliant mind now dying with dementia, and Caliban literally hiding from the light, like Logan seeking redemption that he cannot find.

The world has changed, Logan and his kind have become  irrelevant and forgotten, their lives passed into mythology and fairy-tales for children and disenchanted youth. Our protagonists are haunted by their failures, hurts and the death of those they loved, they no longer have a place and are simply waiting out their days till death will release them from their suffering. Logan self-medicating, Caliban obsessing and Charles losing his battle with demntia, needing to medicate himself to keep others safe.

If I were twenty, thirty even these would be characters and perhaps little more than back story giving depth to what is to come. I would perhaps focus on the emerging and the new, but I am forty-five. I have lost loved ones, I have made mistakes I cannot change and I carry regrets. Like Logan, I am no longer indestructible, my body has let me down and broken, my place in the world was taken and I am left slightly irrelevant without a place in a world I no longer really want to be part of. Like Logan, I want to pass peacefully, without incident or drama through the days and I am tempted to self-medicate away the pain both physical and emotional. I am not alone, this is the basis of the rather dismissed mid-life crisis, where you realise you have less years left (statistically) than you have lived, where people get sick, they die and you know why people wear sunglasses at winter funerals. And, while many are peaking in their career, many of us never peaked, never had much of a career and see that their time is passing, perhaps past.

It is not all gloomy and black, of course, there are things to celebrate in life, however, those are fragile. Many of us have had those stripped away through no fault of our own, hard work rewarded by being laid off because we were top of a pay grade. We have achieved what we were told was the best thing to achieve and it is nothing at all. The curse of self awareness. The Power-Rangers Movie or Cars 3,  I don’t get to take my children, while other parents will complain and see this a chore, we squander the gifts too easily, and when they are gone we regret we did not cherish them more.

And so Logan is a reflection of us, we see our lives in the characters or we see nothing. If you see nothing then I am slightly envious, because while there are only elements of crossover with these ultimately fictional characters, they are some of the most painful elements of my life. I have tried to hide away and drink, as well as drug my way through life because it hurt to much to face reality. I am keenly aware that as a choice these are on my shelf and while they are not “go-to” so much as they once were, they are preferred ingredients.

Part of me is happy to pass gently and relatively quickly to a state or irrelevance, I have lost faith in a world where I have never felt at home. I have never felt of a place, and the places I feel most connected to I have only visited a handful of times and never lived. I am disconnected completely from any sort of family and have never wanted any connection, when their lives crossed I felt no affinity or desire to foster relationship. Their concerns and focus alien, and their drama’s and big deals seemed irrelevant and trivial compared to what matters. The tie of blood no bond at all. And so it is with the world, I see hate and suspicion growing with an agenda with which I want no part. Not even discussion, because that assumes they are legitimately objects for consideration, and in my world they are not. #notmyworld perhaps?

I have to walk in this world, despite my intense desire to be apart and away. I find myself dragged in and helping others against my better instincts, and I am no hero. I hope simply that what has happened to me can stop someone going where I have gone and feeling what I have felt.

Leave the storehouse of regrets untouched and gathering dust.

Monday Night Reflection: Considering

Considering is a word that has cast a long shadow over me. All of my achievements come with the qualifier “considering”. I know that it is meant well and usually comes from a genuine place. But, this does not make it any the less crushing. I did well at my exams, considering, I did well at University – considering and even last year when I last competed, I did really well, considering.

Somehow, my achievements are unable to stand on their own merit. What considering means is that, although on the absolute scale this isn’t actually any great shakes we are recognising that it was harder for this person to reach a normal standard and we don’t want their effort to go unrecognised. It’s a lovely thought but ultimately I did a bit crap.

If it is not in the realm of achievement per-se, it happens in life where I did really well considering I was sick. Again, it doesn’t feel like there is a true appreciation that in this circumstance, as with others, actually I did well, full stop. The fact I was sick or at a disadvantage does not need to be mentioned unless it is to elevate the achievement, and perhaps this is my own perspective only, using the criteria of considering, does anything but elevate the achievement.

Last week I was crippled in pain, I did well to do anything, as it happens I did a few things and got more done than I would had I done what I should and rocked up at hospital to get the treatment instead of doing it at home myself. It wasn’t I did well considering, it’s I did well because I should have been in a hospital. In the academic realm, I didn’t do well considering my dyslexia, I did well despite it, and because of it, my appearance in the annals of those with a post-graduate education and a degree in the humanities and the sciences (yes 3 in all) is actually phenomenal. It was hard work, long work, rather like finishing top 3 in the 100m when you did 110m. That would not be they did well, considering.

Where I am at it is, I feel like consideration isn’t what I or people who face a challenge really want or need because it feels like it comes from the excuse side of explanations. It feels like you get consideration when you fell short and there was a reason you were below expectation or what was required. Maybe this is an academic thing where you can be upgraded if there are considerations like being ill. I have always wanted to stand or fall compared to my peers, and then for the fact I stood equal or wherever I stood despite the challenges or disadvantages that I faced in my individual journey.

I don’t like excuses, right now my year feels like the shadow of considering is darkening everything I do. I am behind, I am not where I wanted to be, and considering how sick I am and have been this may be a remarkable achievement, but at the end of the day its not enough of an achievement to be doing what it needs to be doing. The project is behind and hasn’t started to realise its income or get launched properly. Considering doesn’t change that opportunities have been lost and things have not happened while I have been ill because its my job and responsibility to get them done. It may be a cant, but I cannot make an excuse, I may have a reason but just as the world of bills and commerce doesn’t let me off, I don’t want to be let off by anyone else. Yes, admire what I have done facing what I have faced, but please, don’t attempt to tell me that what is not okay, is, because the harsh reality is, it really isn’t. In commercial reality, bills need paying, and considering doesn’t pay them.

Perhaps I am being harsh on myself, but this has been my reality till now, where I have been able to be ill and not lose everything. Which is awesome, but which makes me keenly aware that I could be making excuses and I don’t want that. It has been a tough week, mentally it has been impossible knowing what isn’t being done and what is slipping while I am powerless to stem the tide. It’s crushing and no amount of consideration is changing that. It is like school, when I broke my arm the homework still had to be done, growing up, you got ill, your chores were your chores and you did them, as an adult nothing changed, no one picked up what was my job.

I’m not sure where this is going, I started simply a little tired of hearing I am doing well considering, and I am. It doesn’t matter, it doesn’t make me feel better, and it doesn’t change things. Where I have arrived is that, considering hasn’t changed anything because it’s been words, consideration has been nothing but a speech given to me. What, has changed is that, while those closest to me have stopped saying considering at all without me saying a word, they have instead picked up whatever slack they can for me, lightened my load to the point I have been able to do something rather than being crushed by overwhelming demands.

And I still don’t want consideration, I am tired, I hurt, I need to rest, I’ve pushed as hard as I can push today, I don’t want sympathy or for you to make excuses, I want you to make a difference, either be inspired by the achievement against the challenges faced or do something to lighten the load of someone you care about so they too can achieve. Lift them up to higher levels, not let them off with mediocre.