Mothers’ Day

In the UK, it is Mothers’ Day. My wife has spent the day going all the way over to Devon to see her mum. I don’t really talk about my mum much, so I thought I’d talk about her death, at least.

In 2012, my mum went into hospital (Liverpool) for a biopsy. She’d told me that she was going into hospital, she hadn’t told me the detail but she had told me she’d be back out in a week, so I assumed nothing special. The first I knew that all wasn’t well was when I couldn’t contact her afterwards. She’d caught some kind of infection during the biopsy, and had been quite poorly.

Either I found her, or she found me, I can’t remember which, but I remember driving up to Liverpool and back the weekend before she died. She was obviously weak, but the same person. I took my daughter up with me and they were made up to see each other.

I got a phone call on the Monday, the day after my visit. Mum had had a bleed on her heart, and had had a heart attack in hospital. If you’re going to have a heart attack then a hospital is probably the best place to have one, except that before resuscitation could begin, they had to drain the area. There was some delay, therefore, in resuscitating her. When I went back up to Liverpool on the Tuesday, mum was hooked up to a life support machine.

We stayed up there for the week. Me, my wife and my daughter. During the week nothing changed with my mum, I spoke to various doctors who left me in no doubt how grave the situation was. In that week, everybody who meant something had come to visit. I can’t remember who proposed turning life support off, but once everybody had seen her, I agreed. On the Friday evening, we switched the support off and mum was on her own. She lasted forty minutes before she died – my wife and I were with her, as was her brother. My daughter was only 12 at the time, seeing grandma in Intensive Care…. well, even that is something a 12-year-old shouldn’t see. Funnily enough, my mum was far closer in life to her sister than to her brother, but her sister – my auntie – was going through her own turmoil at that time, as her mum (my grandma) was also in hospital. It was 15 March, 2012.

My mum’s death hit my daughter hard. My wife and I saw this event as the start of my daughter going off the rails. Looking back, daughter had problems before then, but she was very close to Grandma and it had a big effect. It didn’t hit me quite so hard, my mum was stupid over my daughter, and I did what I could to foster that, but I’d long since grown apart from my mum. It’s ironic really because I enjoyed a different, more affluent life than she did, and yet it is largely thanks to her pushing me, especially in the early days. I know she was very proud of me – just as we all want our kids to have it easier than we did, to take for granted those things that we had to work for, she was no different.

Anyway, mum was only 68 when she died, quite young these days. I did think of pushing for more details about her death – in particular, was this bleed caused by not performing the biopsy properly? I didn’t take it forward because there was a fair amount of grey area, plus the NHS tends to close ranks around its own – something I now believe even more firmly.

The results of the autopsy were the clincher. They found quite advanced cancers, even spread to near her heart, so even if my mum had have survived, she’d have faced hard labour. She had told me about her wish not to be resuscitated long ago, and that goes along with my thoughts that there comes a time when we don’t mind death. Not least, we see people around us living with all sorts of ailments, and we don’t want that for ourselves. In any case I’ve since seen on the stroke ward people who have survived their initial stroke, but who just lie in their beds as shells and no longer have any interest in living. So in some ways it was better for mum that she went relatively quickly, having enjoyed a relatively healthy life, certainly going before she was elderly and infirm.

Green no more

I have previously mentioned here that I was a member of the Green Party. I did and do believe that we need to start putting environmental concerns higher even than economic concerns. It’s funny, because Tony Benn of the Labour Party, in his later years, classes himself as a “free radical”, and I’d use that same tag, although I don’t agree with everything that Benn put forward.

I’ve stopped supporting the Greens. The reason? Well, in 2016, the UK had a vote which decided upon X. The “correct” response, for me, would have been to say, “OK, within the boundaries of X, how can we best develop policies that protect the future?” Instead, the Green Party responded with “X is wrong, so let’s overturn it”. And, that’s been the case for three years now.

In other words, it doesn’t matter that the public want something different for the future. And have voted for it, too. Their response, instead of working with the public, is just to tell them that they were wrong.

It kind-of worries me when a party, any party, says that they will ignore public opinion, especially when that opinion is expressed so clearly as in a referendum. I’ve heard this from the Greens, but not only from the Greens. Vote for us, because after you do, it won’t matter what you think. I mean, it might well be that you consider X to be a really bad idea, but it is a decision that, however bad, has already been made.

I mean, one thing that has become readily apparent over the last few years is that different people have very different ideas about the meaning of the word “democracy”, but I’m afraid somebody who says “I don’t believe that X is good, so therefore I will keep fighting to overturn it, despite what other people say”, doesn’t do it for me. At the very least I want constructive politicians.

The 2016 referendum has probably damaged me less than most. Whilst I have a view on the issue, I can easily see why somebody else might take a different view. So, I’m not going to fall out with anybody over this. But one area where I have been damaged is that by seeing parties (any party) just trying to wreck the process, rather than using it to be constructive, has heightened my cynicism toward them. I remember hearing Vince Cable (LibDem leader) saying that the main goal was to overturn Brexit, by any means necessary, and that was enough for me to mark him as a “fail”.

One further point, I’ll make it quick, is that if this vote isn’t acted upon, the public then has the proof that their vote is irrelevant. That they decide something, and that the powers-that-be ignore them. Therefore, why should they ever bother to vote again? You know, if you want people to respect elections in the future, then you need to respect those in the past. What is at stake here is not just a single issue, but the whole electoral system.

Oh, and in case you’re wondering, my general politics haven’t changed, just my allegiance to political parties. I still believe in protecting the environment, and believe we’re so far up the river, it probably needs to be our highest priority. To that end, I don’t fly and have drastically cut my meat consumption, you’d probably describe me as a “flexitarian” now.

Thoughts and Feelings

I’ve talked before about one of the funny things about stroke. In the months immediately afterwards, I clearly remember having a feeling that every day would be my last. Nothing much bothered me, other really than getting everything in order to make things easier for my wife when I was gone. In the months after the stroke, I closed my business down and closed most of my bank accounts. I thought about death a lot, to the point where it doesn’t really bother me. The pain associated with death bothers me, but not death itself. One of the good things about the stroke was that there was no pain whatever, so when I have to go, I’d take another stroke, please. A knock-on effect is that I’m less likely to pay attention – even now – to unimportant things. I don’t pay much attention to tv, for example. A lot of “news” programmes put me off because of their shallowness.

Don’t get me wrong. I enjoy life and to die anytime shortly would be way too soon (true for all of us!), but I’ve achieved most of the things I’ve wanted to do. Work was always important to me, and I was working on Wall Street whilst still in my 20s – not just working but leading stuff. Home-wise I have a mostly-happy marriage, and have done the “kids” thing. That didn’t go well, but it’s too late to do anything now. In any case, the reason that things fell apart with my daughter were because I had one set of values, and she had another, different set. Very different. So different, you’d never guess we were related. And all these differences are still the case, so I think it is better to keep a distance between us. So I don’t really have any pangs of regret about things – it’s a shame things didn’t turn out better,but you can’t just set your values to one side, can’t just stop being “you” for someone.

This preparedness to die, I don’t really have that feeling any more, or rather it doesn’t dominate. Three years on, I’m very much looking toward a future. I get value from life. I’d be easily able to do a job, when one comes up. Of course, it doesn’t have to be as challenging as Wall Street! But it’s not as if I’m medically unable to work, it’s more a case of waiting for the right opportunity to come along. Even now, pre-job, I’m helping people, and keeping myself busy, with my charity work.

It’s funny, because when I do my hospital visits, I try to find common ground with the patients by remembering my own experience in there. This far downstream, the memories have faded somewhat. The overall feelings I had don’t fade, but the details fade. So while it is inevitable that I’ve become more skilled at talking to people over the years, some aspects of the role have become more difficult.

But, actually, it is important to remember that I once had these feelings. Despite my disability imposing physical limits on my, I joke to people that I think twice as hard. Except it’s not a joke, because I’ve experienced things that most people don’t experience until years later. And every one of these experiences makes us wiser in the future.

A New Breed

One of the things that I’ve been encouraged by in the whole Brexit process is the level of engagement. We’re even at the point now where people are raising questions about the UK’s system – the role of parliament, the role of referendums etc.

Ex-cabinet ministers such as Ken Clarke and Michael Portillo are both on record as saying that referendums are always a dumb idea. Presumably, they very much see a world where the public should only be interested in politics every five years, to elect their MP. Thereafter, they delegate all political issues to that MP, for the lifetime of the next Parliament. Doesn’t really satisfy me, because I want to be more hands-on than that.

So I think it’s a bit short-sighted. It’s not how I see things, anyway. Even for somebody who’d voted for their MP, you wouldn’t expect eye-to-eye agreement on every issue. In casting their vote, people select the person who, on balance, they judge to be the best candidate. And for someone who didn’t vote for their MP, even less of the above!

To get into specific issues, I’d be more than happy to give my opinion on a whole range of things. For example, as in the 2016 referendum. I don’t mean to dot the i’s and cross the t’s here, but to set a broad direction of travel. Do I want to be in or out of the EU, say. Should the UK maintain its nuclear deterrent? How much more tax would I be prepared to spend on education? For the most part, yes or no, but some issues where you present multiple choices. I suppose that, by implication, the best way for Parliament to elicit such responses is by referendum. So, rather than having a referendum once a generation, I’d have one every week until there was nothing left to discuss.

This does at least get rid on one criticism – the broad one that MPs are stupid and useless. Their defence would be that they were only doing what the UK public had told them to do.

So I’d be happy, then, to set a direction of travel. I then see a role for MPs, to take that direction of travel and to turn it into law. To worry about the nuts and bolts of how we implement something. Of course, at this point, I recognise that the public might specify two different directions of travel, which might make implementation of something impossible. I have ideas on this, but won’t go into them here.

The problem comes, of course, because that’s what our current breed of MPs are used to. They’re used to being elected, sure, but then on doing their own thing on an individual issue. They’re used to determining direction of travel, as well as implementing the detail. So, fundamentally, I’m talking about a different role for an MP – somebody who can take my broad instructions, and fill in the gaps.

I think there are implications to this approach. I think it was exemplified in the 2016 vote, but asking a very straightforward question does not necessarily get the clearest answer. Do you want to be in or out of the EU makes no mention of customs unions etc. – if we had have been asked about them, it would maybe have made subsequent policies easier to determine. You might argue that “out” means “out of everything”, but I don’t think it was particularly clear at the time, what everything was. In short, I think you need a good deal of skill when deciding exactly what question you want to ask.

Another implication, as I said, is that the public might contradict itself. I think there are ways of dealing with this, but we need at least to be aware of it.

Anyway, I don’t want to drone on about this subject. Suffice it to say that I think there is another way of doing things.

Terminology

In a lot of computing, somebody will often say “have you heard of such-and-such?” Truthfully, you’ll say “no”, but make a mental note to look it up later. Then, later, you look it up, and actually, it sounds very similar to something you do know about. It particularly affects me these days – I’m quite paranoid because I’ve been out of the industry for a few years, so am worried in case the world has moved on. I probably shouldn’t be – I’ve been developing again now for a year and have probably come across most of what I’m going to find.

I’ve been reading today about Microsoft Azure. Not an environment I’ve used or know much about. But, really, having spent the day reading, Azure is based on nothing more than data centres. I was using data centres back in 2000! And virtualisation, which I’ve been using since 2006 or 7.

Of course, Microsoft Azure has added value in these last years, plus (obviously) this is Microsoft’s take on something industry-wide. It is more than just virtualisation these days. There are virtual servers, of course, but also things like virtual databases and virtual messaging hubs for asynchronous communication.

I mean, I don’t badge myself as an expert after a day, but it is nice to know that it is not so much a new technology, more just a new name.

Blue Badge

I have just gone through the process of renewing my Blue Badge, which runs out at the end of March. Do you have Blue Badges where you are? If not, it is a scheme which designates some parking spaces as “specially reserved for disabled people”, and the holder is supposed to show a Blue Badge in their car to prove their eligibility to use the space.

Give our government credit where it is due, their web site was very clear i this area, applying was long-winded but straightforward. There was a bit of to’ing-and-fro’ing because originally, the photo I supplied wasn’t good enough, but even that was sorted out quickly and by email.

The only time my eyebrows were raised during the process was with the volume of data they collected. There was a lot of medical stuff on there. Yet my friend, who is a doctor, says that he was never asked to substantiate an applicant’s claims of disability. So I’m sure this data is held on file somewhere, but not used. It raises an eyebrow in particular in the context of the GDPR, rules regarding data privacy, which came in in the EU last year – these rules specifically state that you shouldn’t collect more data than is necessary.

Anyway, aside from this grouch…

A month later (end April), my disabled bus pass is scheduled to run out. To me, it appeared co-incidental, although I’ve since been told that the two things are timed deliberately.

The government’s Blue Badge application was pretty seamless, then – doable in a few clicks. The council’s bus pass application less so. The form was easy enough, but it was on paper and required a signature at the end.

A quick aside – the stroke left me without the use of my limbs down one side. My writing side. Specifically, any writing is out. If you want me to write, I have to use my “wrong” hand. I’m probably quite safe in predicting that when it comes to writing with the wrong hand, I’m every bit as bad as you are!

So, I queried this. Don’t you have an online version of the form that I can fill out? one that doesn’t require a signature? The response I got was a stonewall “No, either you or your representative needs to sign it”. My representative? That opens up another can of worms. I have full cognitive ability – why therefore would I need somebody to represent my interests? The big deal for disabled people is to be able to live independently, and the local council either don’t realise this, or don’t care.

I mean, if you’re able-bodied, this will all be a storm in a teacup, but to me, as a disabled person, it is a big deal.

It all seems perverse, because these people deal specifically with giving bus passes to disabled people, so you’d think there would be some kind of empathy there. They must be familiar with somebody’s disability meaning that they can’t fill out the form properly. Especially when the government do make it easier – the bar to qualify for the blue badge will be at the same height as the bar for the bus pass. Indeed, one of the acceptable “proofs” for the bus pass is a photocopy of your Blue Badge. So, why not make the applications as easy as each other?

Independent Living

It is pre-8am and have already completed what will be the secondmost Helculean task of the day. I’ve stripped my bed and just put it in the washer. At least, it was pre-8am when I did this – it’ll be later when I publish the post. But, anyway, the biggest task will be getting it all back on again later.

 I still sleep in the same double bed that my wife and I used to sleep in. She moved out into a more comfortable bed, she says that I fidget too much in the night, but I’m happy in it. The base sheet is still a double, but everything else is single – purely to deal with the washing scenario. Any bigger sizes are just unmanageable.

I can just about manage the base sheet, by using the frame of the bed as a stepping stone – I’ve learned to hook it on there to get everything taut, before I tuck each corner under the mattress. I’ve tried, and failed miserably, with the original double duvets so bought singles. They were easy enough to get off, but I’ll swear a lot later trying to get them back on! We saw these gadgets that are just like 6-inch long plastic paper clips, which help get the cover back onto the duvet, just by clipping the corners in place, one by one.

The careful observers amongst you will ask, why doesn’t your wife help you? In truth, she offers, but it is important to me that I be able to do this independently, so I refuse. To give an idea of how strongly I feel about this, I’d go without changing bedding altogether if I needed someone’s help every time – she thinks I’m mad but people who aren’t disabled never understand the importance of independence to somebody who is disabled. It is a bit weird – when we both slept in the double, putting freshly-washed bedding back onto the bed was something we always did as a team effort, without thinking. But now I need to cope on my own. 

You notice the same thing, by the way, on official forms. Even those forms with are designed specifically in order for a disabled person to claim something, they are constructed such that the disabled person often cannot fill them out unaided. Wiltshire Council are terrible for this, just in terms of my personal experience. It does kinda make you wonder because, here I am looking for work, and they have this gaping hole in that they don’t understand what makes disabled people tick, despite the fundamental constraint that it is the duty of the council to provide a lot of concessions for disabled people. With my wife I can forgive this because it is a learning process for us both, it is less easy to forgive a council who must deal with disabled people all the time. 

Oh, the other question you might well ask is, will I be putting the washing out to dry afterwards? I’m afraid not, the damp stuff is a bit heavy and I can just about get it into the tumble dryer, in about 3 trips. To carry it outside and manouvre it onto the line (pegging it along the way) defeats me. Trust me I’ve tried!

Fatal Deal?

Hearing reports this morning that Theresa May has more chance of getting her EU deal through if it is accompanied by her resignation. That might well be true, but it does make you wonder, why? Is there some sentiment going on here? I’ll let you have this one result, as long as it’s your last?

It raises an eyebrow because I don’t detect sentiment playing any other part in this process.

I mean, it is a shame that we have come to this, but I think the last thing we needed for this process was somebody who leads from the front, and expects everybody else to follow. Membership of the EU is something that has always been a hot topic, since before I was born. People have long held all sorts of opinions on the issue, and you’re not going to be able to browbeat somebody into giving their support.

I think the job required somebody who was able to take all these opposing views and hash out something that would keep most people happy. A negotiator, somebody with a gift for listening to a variety of opinions and coming up with a compromise. Not least, you have to talk to the EU and see what they want, plus, you have to talk to the UK (Parliament, say) and find out what it wants. Then you have to codify something which is acceptable to both.

I mean, maybe even that wouldn’t have been enough? Maybe when you have one side which says “I want X” and another side which says “I want Not X”, you are doomed to failure? But, encouragingly, I have heard several MPs talk about respecting the 2016 vote, yet engineering Brexit so as best to protect our affluence. Even somebody like Anna Soubry, I’m sure seen as a troublemaker in many quarters, has said this. This seems totally fair enough to me. Unfortunately, I’ve also heard many people talk about how we can ignore the 2016 vote, and they’re still doing so. I don’t think that’s helpful. Frankly, I don’t think that anybody who’s just said “I think it is best that we remain”, party leaders, ex-leaders or no, has been helpful here. If you start ignoring votes in favour of what you believe in, then you’re a despot. I don’t want to live under a despot, so straight away you lose credibility as far as I’m concerned. This goes for the many small parties, some of which I have supported in the past, who can’t get past undoing the 2016 vote, not least by trying to concoct reasons why the poll was invalid. So, I’m afraid that straight away, some people would not be happy with the end result, no matter how reconciliatory it was. But even somebody like Ken Clarke, who is an avid Remainer, and has said in no uncertain terms how dumb Brexit is, has been constructive and has proposed some plans for our future relationship with the EU.

I don’t buy this argument that this is a binary choice, either – you’re either in or you’re out. Nice and simple, but we learned over the last 3 years, there are degrees of whether you’re in our out. If you stayed in, then the UK already has some opt-outs, notably on the Euro. So, treaties were agreed which allowed the UK to have different terms to somewhere like Italy, say. Same on the other side. If you ultimately leave, say, then how close do you stay to the EU? WTO? Customs Union? So I think there are degrees here.

Funny, one of the things that Cameron said he tried, during the 2010-2015 Parliament, was to reform the UK’s relationship with the EU. He didn’t get anywhere, I wonder if he even tried? I wonder if his attempts just fell on deaf ears? I wonder if those people in power in the EU have any regrets that reform never happened, just in terms of keeping its citizenry happy? Happy enough not to want to leave, at least? It’s not as if the UK is the only malcontent, just that we’ve taken it further than anybody else has so far. I wonder if Cameron has any regrets that he didn’t try harder?

So I think a country’s relationship with the EU has been, and can be, bespoke.

Getting back to May, I think if there were one word to remind me of her time, it would be “listen”. It’s ironic, really, because to me, Corbyn always seemed to want to be a chairman, a moderator, rather than somebody who just says “I want us to do X – have faith and follow me”. Don’t get me wrong – I think Corbyn has his own issues, not least his followers, but I think in this case a chairman would have been ideal. It is good to encourage the people around you to be creative, rather than just expecting them to follow.