Good company in a journey makes the way seem shorter. — Izaak Walton
Source unknown
I’ve been trying to get this blog going for ages. I keep a journal where I have been trying out all the things I might write about on here. The main thing is that I don’t want this to be a depressing place that people don’t want to visit. I’ve blogged before some years ago but that was very lighthearted stuff, and I deliberately kept my MS out of it, I didn’t want to be defined by it. Things have changed since then. The MS has progressed sure, but many other things have changed too, not only in my life but in the country, in the world. So, I have to write about my life with MS but I also want to write about daily life in other respects as well. There are many things on which I have opinions and would like to share them, hopefully to provoke discussion and debate but also to raise awareness of issues that many people don’t know about.
This all sounds very deep, I don’t mean it to. I just want to give a heads up on what’s coming! Be ready 😄😄
just one more thing, I won’t be writing everyday, sometimes it will be totally beyond me!
In June, this year, my husband and I took our usual flight from Heathrow to Toulouse in France home to our house where we lived for 10 years. Since we returned to the UK three years ago we can only manage to get there for just six weeks a year.
This is because of my disability. Or, actually it’s not! It’s because it is so difficult and stressful to take the flight.
We used to drive down back in the day when we were both fit and healthy, sometimes staying somewhere on the way down. We would stay for six months and then go home for six months.
So, we moved, lock, stock and barrel. I got into the health and social security system, and we got help. At the time I could still walk with a Zimmer frame. As my condition worsened the amount of care I needed increased and it happened!
But now we had to fly home if we wanted to see our family. And so it began. A catalogue of errors and mishaps and downright inefficiency and incompetence. Flying from the UK and back after our visit this summer was the pinnacle of all these things.
When I was no longer able to drive, but was still just about walking, we could fly Ryan Air. Easy peasy! When I could no longer manage the stairs at home and the farce of attempting to get a diagnosis (a story for another day!) we decided to move there permanently. Our house is an old farmhouse with no stairs.
Flying out from Heathrow in June, despite asking the Assistance Team four times not to take the legs off my wheelchair to transfer me to a boarding chair (you can’t take your chair on to the plane), they did it anyway. Somewhat inevitably, they were subsequently lost.
The return journey was even worse. To cut a very long story short; flight cancelled, rebooked for the next day, disability arrangements not carried forward, upshot – no Assistance Team at the airport! Assistance was provided – by four young women in BA staff uniforms. They decided to stand me up on my completely useless legs despite me telling them what would happen. Result; I collapsed painfully, they panicked, threw me back towards my chair which I only just reached and I ended up in an extremely painful and undignified position. They called the Fire Brigade!
The one good thing was we were upgraded to business class! During all this I lost a front tooth. Back in the UK I had to have emergency dental treatment privately ( no NHS dentist could give me an urgent appointment) which cost me £745!
I decided to make a claim for compensation from the airline. After all, they had reimbursed me for the cost of the new wheelchair legs I had to buy.
They disputed the claim denying any liability. Now, strictly speaking, British Airways do not provide the disability assistance themselves. It is provided by another company. However, on this occasion they did, as they were left with little choice. They are refusing to compensate me for my dental treatment, saying that the airport provided assistance (in my view totally inadequate) therefore they cannot be held responsible, notwithstanding the fact that the Senior crew member told me to make a claim.
I need to make something clear. It’s not money that motivates me. It is the sheer inability of companies who advertise a service to understand the need for understanding and empathy when dealing with the diverse needs of people with disabilities. But, more than that, they need to listen. I have made this point over and over again to BA, on forums, anywhere I can. The CEO of Disability Rights UK (www.disabilityrightsuk.org) has written to his BA counterpart suggesting ways in which they can improve their service.
Yet, everyday on Twitter I see complaints about BA, RyanAir, and Easy Jet and their disability assistance.
I don’t know what it will take for them to wake up and smell the coffee, but I know I’m going to keep on trying.
Since I wrote about the Stoics in my last piece, they seem to be popping up all over the place particularly in the Philosophy section of Medium.com. This a daily digest site with a platform for new and experienced writers to showcase their craft. One name that appears most frequently is that of Epictetus. He was a freed slave who studied Stoicism with the permission of his master, and gained his freedom after the death of Nero. not much is known about his life, other than that he lived a simple life according to the Stoic principles:
Epictetus taught that philosophy is a way of life and not just a theoretical discipline. To Epictetus, all external events are beyond our control; we should accept calmly and dispassionately whatever happens. However, individuals are responsible for their own actions, which they can examine and control through rigorous self-discipline. (Wikipedia)
It would appear, just from the above short extract, why people are talking about him. In our current political morass those in government and Parliament, on all sides and of all persuasions should exercise self-discipline when it comes to discourse. It is absolutely essential when choosing what language (i.e. words and terms) to use, self-control is paramount. The way our media operates should ensure that speakers act responsibly by not using inflammatory language, although it must be said that many politicians use the media for precisely the opposite – to add fuel to the fire! I would definitely point them in the direction of our friend Epictetus
This may seem like stating the obvious but, if , like many people you, dear Readers, are as shocked and disappointed at the behaviour of our politicians as I am, then I am sure you will agree that it needs to be said. The words of Epictetus, quoted above, say it most distinctly.
An ‘unlawful’ Prime Minister
I read over the weekend that Boris Johnson is considering making the Supreme Court a US style partisan affair. Judges would be selected by the government rather than the Monarch. This scares me more than anything else that is happening at the moment. The piece I read was a small paragraph in a sidebar, so as not to appear too important. But nothing would be more damaging to our democracy. In a country that has been one of the earliest and most stable of political systems for centuries and has no written constitution, the separation of powers is how it works. It is all based on the rule of law, of which the separation of the Judiciary from the Executive is key. If you want to destroy democracy in Britain that’s the way to do it!
All Star Wars fans will recognise the famous Joda quote in the title. In 2004 fear took over my life. This is when the first symptoms of MS began, and I had no idea what was happening to me. I went from a fit, active person to someone who could only walk a short distance, had difficulty driving, could no longer type with both hands and so many other things. Almost overnight. The fear was intense, I suffered panic attacks, I cried a lot, lashed out at my husband and he at me. This was completely alien to me, we had been married for a long time and for the most part happily. Neither of us could understand why I kept falling over and had to rest for half an hour after my morning shower before I could get dressed!
I was afraid, paralysed by fear. This made my symptoms worse. By the time I was actually diagnosed (seven years later by a French neurologist!) I could no longer walk, write, feed myself. Since then I have had peritonitis, a urostomy, numerous hospital stays and visits, four wheelchairs, and most serious, sepsis with toxic shock which had me at death’s door.
Notwithstanding this, here I am. I’m not saying that I’m not anxious, I am a lot of the time. You never come to terms with having everything taken away, but you learn to live with it, and to enjoy the new life you find yourself living. I maintain my interests, reading, politics, food, I have taken online courses and learned (am still learning) to blog. Having MS in whatever form does not mean not having a meaningful life, just a different one.
One thing that is essential if you are reading this, don’t think this is all going to happen to you. It’s not. Every single case of MS is different. Whether you have yet to be diagnosed or have a diagnosis your feelings about it will be different.
If you are alone, afraid and depressed, all this may sound a bit smug. I don’t mean it to be, this is my story. It’s taken me 15 years to reach this point. Life is never simple. Even without added complications such as illness, my life is a challenge every day. I won’t say the fear has completely gone, I don’t think it ever will, but I hope that anybody reading this will take something away from it that may help them.
If you are facing this alone, there are many supporters out there. Try https://www.ms-uk.org or https://ms.newlifeoutlook.com. Another useful site is the Sue Ryder charity which provides local Day Centres where you can undertake activities or just have coffee and cake! Find them at https://www.sueryder.org/
What a title – ‘reflections’? Not exactly a draw-you-in type title is it? I’m useless at thinking up titles anyway. Perhaps I should write first and title afterwards. The thing is I wrote it because it was just what I was doing – reflecting. Being confined to a wheelchair there is plenty of time to do it. This morning we have sunshine at last so I can sit here in the kitchen with my coffee with the doors open and look out at my lovely garden (courtesy of the lady who lived here before us, none of our doing!). At the top of the hill in front of me is the local cemetery. I can see a stone cross and various headstones. When we first moved here it spooked me, but now I regard it as a peaceful place. I have been persuaded by lots of my friends that that is what it is. So I’ve come round to the idea.
My main thought this morning is I’m so glad I’m alive. Three years ago I was brought back from the brink of death by a fantastic group of doctors and nurses to whom I owe a debt of gratitude that is priceless beyond words. Since then I’ve valued every second. And I intend to go on as long as I can before I take the walk up the hill in front of me.
At the same time though, I know that there are many people in this world
who do not have the opportunity to sit and reflect as I have done this morning. I’m aware of how much of a luxury it is. I don’t feel guilty when I see a homeless person sleeping on a bench in my local town centre, that would be pointless. What I do feel is just terribly inexorably sad. I just want to give him a big hug. But that would not help to get him off the street.
Is it alright not to feel guilty? It’s not my fault, I think. It may not be their fault either but a result of a chain of circumstances. If it’s a systemic failure, which is my preferred option, then how can I, we, as individuals really contribute to solving this crisis. I know this is endlessly debated, and many individuals do give their time and effort to try to change things. I’m not saying anything new, only what came into my mind when I was ‘reflecting’.
This post was written last October after a long period of inactivity on my part. Rereading it now, it’s seems even more relevant. I thought I should repost it. Obviously those in government have changed since then.
‘Now I feel ready to write again but where to start? Brexit? Boris Johnson? Donald Trump? It’s actually all too much I’d be writing for hours and much of it would be boring and probably unacceptable.
What I will say is this; when did we stop doing politics in the way we are known for? In other words when did we forget what democracy in this country means? We had a referendum on whether we should leave the EU, the majority, however small, voted that we should. 4 years ago a in a referendum Scotland voted to stay in the union. Yet, there are people from all sides in England and in Scotland making an almighty din calling for second votes. I find it tedious in the extreme. I’m also aghast at the behaviour of those in government, even those in the cabinet, making the Brexit negotiations so difficult for the PM and Dominic Raab as they are facing the EU from what looks like a position of horrible weakness. A referendum is a democratic vote, therefore the result should be honoured as such. Those who are privileged to govern us should put up, shut up and get on with delivering the people’s decision.’
My opinion hasn’t changed. It has become more tedious and vitriolic with more people spouting nonsense. I can’t quite believe that we’re a year on and nothing has changed!
In both its original Hellenistic and subsequent Roman iterations, Stoicism fastened onto reason’s decisive role in our lives. The compass of our rational faculties allows women and men — Stoicism, along with Epicureanism, was exceptional in its refusal to relegate women to an inferior position — to navigate a world in which we are carried aloft by vast and immovable forces. We cannot master these circumstances, but we can master our attitude toward them’ Robert Zareski in the LA Review of Books
At this moment in time we are certainly being ‘carried aloft by vast and immovable forces’. But as to mastering any attitudes towards them, this is proving far more difficult. There so many people whose actual attitude towards the current situation is impossible to discern. But we shouldn’t confuse attitude with opinion. There are plenty of people only too eager to give us their opinion, but does this reflect their attitude?
My attitude is clear to me, as a citizen of one of the world’s oldest and most stable Liberal Democracies, I believe that the referendum was a democratic vote, therefore the result should be honoured. The people voted leave so we should leave. Theresa May believed this even though, like me, she was a ‘remainer’. Subsequently, the politicians in Westminster have completely muddied the waters. The present Conservative Party is no longer recognisable. We might wonder what Edmund Burke (the so-called Father of Conservatism) might have made of the divisions and wrangling; for him the ‘party’ meant individuals coming together in “the national interest upon some particular principle in which they are all agreed.” Certainly the national interest seems to have gone by the board.
So here we are and there we go! Into the abyss – or maybe not. Reason seems have deserted the people who need it most. This leads to chaos. I am struggling to analyse it and to make sense of all the different views and attitudes floating around.
What I do know is this. In politics there are cataclysmic events from time to time. Politics is cyclical. Although the situation is serious, it will more than likely pass. Eventually something will be decided, by whatever means necessary. At the moment it seems unlikely that Boris Johnson will last long in his post but we will see. It seems unlikely that we will have a Labour government but we will see.
At this strange time there definitely more questions than answers and that means uncertainty and a feeling of instability. Leaving the EU was never going to be easy, but nothing in life ever is is it?
*Robert Zaretsky teaches at the Honors College at the Univerity of Houston. He is the author of numerous books and articles on French Intellectual history.
