Dear Diary: Dreams are like Stars

They are dead when you look at them too.

It’s true, the light from a star takes so long to reach us that when we see it the star has probably died.

When our dreams die, they die inside of us before people see that they have.

They only mattered to us, and their death only matters to us because we let it matter.

Ultimately it was all meaningless and worthless from the start.

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Thinking Out Loud: I used to try really hard

It seems a very long time ago that I downloaded a blog planner and I was reading pages and pages on how to create content that would engage readers and grow an audience.

I would be carefully timetabling days so I could create content, especially my Monday Night Reflection, which was so very dear to me, that would be valuable and well thought out. Monday Night Reflections were particularly special because I was letting the blogosphere into my thoughts and sharing genuinely hoping that I was helping create something that would be of value to someone.

I knew that staying anonymous would limit way in which I could grow, but I tried my best to use strategies that would create an audience and some organic traction because I wanted engagement, my heartfelt wish was that someone wouldn’t hurt like I did, or would see that, hurting was okay, and that there was through it to get to.

Thing’s changed, and I thought perhaps I could document overcoming the attacks of what are most likely hemiplegic migraine, perhaps documenting survival in a different way, the challenge of having my creative ability taken, robbed even and learning, relearning, sometime learning daily to do something that had been a joy and such a big part of my day would be something I could share.

I found sharing impossible, there was nothing to share, it was blank, you just write rubbish and bin it, till its not rubbish and you feel comfortable sharing what you have. My failed attempts are not something I keep, like falling of a cycle, not something you really need to post for the world to see, failed is failed.

Thing is, you have stats, good old Word Press, and there they are not changing, there I was dedicated as an author to my craft planning and working to create, and there I was dead in the water, lost at sea, struggling to express myself at all.

I care, of course I do, every one who creates cares, I want people to engage, everyone with a blog is really saying look at me, I am no exception, what I mean to say is, I am here creating, I hope you like it, I am sorry if its haphazard, random, without focus or purpose, that’s my life right now, that’s is me, that is my blog and my creativity, I gave the structure thing a go, I couldn’t hack it, it didn’t fit, I am too old, and just a little bit too grumpy to wear things I don’t like.

Thinking Out Loud: Staring at the Future

It has taken me a long time to face writing this: recently an infection put me back in hospital. Opposite someone with hemiplegic migraines.

They were under a regional specialist centre with a proper specialist consultant and were under a treatment team with multiple therapies. They were exactly where I am supposed to want to be, they followed the advice of every attack getting admitted.

It was horrific. The man was a shell, the ward was noisy and chaotic, and they had no idea how to treat him, worse, they were random and haphazard with his pain treatment, most of the time he curled facemask on, earphones in pain trying to make it through the day to his release.

He saw no treatment, he was pushing his family away as he failed to cope with the emotional effects of attacks, and each admission robbed him of days and weeks of his life, you could see him imprisoned by his “disease” and crippled by doing exactly what he was told to do. Exactly what I am supposed to do.
We spoke, he could not believe that my attacks were both longer and more debilitating, that I had no support in place, and that I was not being admitted like he was each attack. His disbelief crashed head first into the fact that, while we shared symptoms and experience, I had carried on doing life in direct defiance of medical advice and was doing well, and he, doing what he had been told, further down the road than me, was now virtually crippled and imprisoned by his condition.

We spoke only that afternoon, he left. I doubt he will change, he is embedded in being a patient and invested in the model where he would be saved by modern medicine. I don’t believe in white knights on unicorn’s, as a child I learned very early that it doesn’t matter how loud or how long you cry, how much it hurts, how bad it gets no one is coming to save you.

Perhaps then, out of the damage of those abuse years has come a useful toolkit for journey ahead

Dear Diary: 19th July 17, At The Head of the Valley

Back from a weekend in Wales.

For many, this is a simple thing, for my Mouse this was a weekend of overcoming fears. Fear of the unknown, a trip to a new and unfamiliar place via new roads, to the countryside. No urban landscape, no hospital, no backup plan, no safety net, the very darkest of unknowns.

However, it was great. I walked up hills, found peace and solitude, walked in the woods and listened to the river whisper.

I cooked in a little cabin kitchen and connected back to myself.

The urban expanse brings neither comfort nor security, it feeds my fears and imprisons my minds, plays tricks on me and convinces me that outside is the enemy. It is people I fear, people are the cruel, random, violent, betrayers of trust.

Nature has no favourites, it is not cruel, nor kind, it is, it does not change, it seasons have always been and will always be, it is not capricious of malevolent, it does not plot or betray, it has no skeletons, no secret past, nature has not lied, nature does not rewrite the past.

Mr Mouse keeps on Moving, keeps in doing, good one Mr Mouse!

Monday Night Reflection: Back to Normal

That is a lie, of course, there is no back to normal. Not in a bad way, but I am not going back. I had decided to move on before any of this dropped on me, I had changed direction, and normal was a fluid state of moving forward towards something new and different.

Normal was not a set routine or structure, I was developing a new business venture, I was practicing my skills, I was growing myself and exploring directions and possibilities to see what and what not plausible or possible, what could be developed for money and what was best left as artistic endeavour for artistic endeavour’s sake. My business was being grown, not pushed, I was learning from past mistakes, and the pace was consciously, in fact very deliberately slow. Each step was small, and consolidated, assessed and embedded, decisions taken carefully, investments very circumspectly undertaken indeed. I was very keen to be in absolutely no rush to spend money, time, or unnecessary effort in a fruitless endeavour. I was keenly aware that every resource I had was very limited and that my project was one I wanted to grow properly, healthily and strong in that organic way of a business finding its rightful place.

None of that has really changed. I have, I have made no secret that my skills and abilities have been affected, and I am relearning things. The timetable has been set back, and along with that, my blog has had to change from what I really wanted to be doing at this point in time and is not really what I wanted to be sharing either. However, my business, my blog, and my personal life are still there, still being developed and I am still working on each of my goals.

I have had a setback, and in the real sense of that, I am working from behind where I was, however, I am still working slowly, and that, ultimately is all that matters.

So while, there may never be, a back to normal, there is a normal service, and that is coming back.

Dear Diary : In the Spaces

Right now I am sat in a neurology unit. I was admitted yesterday, I arrived at 3pm, got to the actual bed for me at 9.45pm. This will typify my experience, lots of time and space ….

Time to think, or to be precise, more time to think, but now out of my space.

It will come as no surprise that I and Mr Mouse are introverts, and that with migraines as a constant issue quiet space and time are a big feature of our day. A hospital is loud, its busy, and of course it’s being a bay of four, plus staff, it is a permanent social environment. It not only drains me really quickly, there really is no chance to recharge properly and sleep is disturbed.

It is something to get through, tests, and repeating the story while really running on empty, but more, it is a week away from being able to make progress towards my goals, its a week on hold. A holiday is part of my plans, its in and it builds me up; hospital breaks me down.

This is no fun, this is not how I want to spend my time, I have almost no independence, I don’t have the comforts of my home, I don’t have my life, which goes on hold, and I slide gently, however slowly, away from my goals, while mentally this is a struggle.

However, the added dimension is external. People expect that is is a fix, like these tests will find a problem and I will get fixed, or that I am here to get fixed, they are wishing me a good outcome, when really, I have no idea what a good outcome is.

It is almost impossible to explain that, not only may the tests not find anything, even if the tests do find something, it is entirely possible that what they find may have no treatment and that there is no fixing this problem at all. The possible outcome is, while I may pick up a label or definition, that will be the sum total of what is achieved and that there will be no help, therapy, fix or even particular management strategy beyond learning to live with it.

And people say don’t be pessimistic, not realising that, this static model is one of the more optimistic outcomes, we haven’t even begun with the progressive degenerative models.

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.

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: Sore

I don’t remember before I was sore

A time when I didn’t hurt even just a little

It was only 15 years, so long ago

Genetic they say, nothing to do

You leave the doctor’s office, abyss

They give you medication, foggy blur

It is great for a while, then it hurts more

No one sees you, no one checks

Boxes ticked the numbers work

You don’t, you try, you fail, you lose

Spontaneity leaves takes happiness away

Planning and management slowly kill you

Strangle you, choke away the will to breathe

Little things they rock you to your core,

You cry, you cry some more, this is normal now

Adjustments are made, you forget what changed

Till you see what life really is and tears fall

Rain, Rain and Pain this is evermore