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.