Tag: Family

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.

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 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.

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