A matter of conscience

One of the questions that I have been asked over and over is what caused all my illnesses. Clearly as someone with an analytical brain and someone who has a deep interest in subjects like archaeology and pathology, knowing what is behind something does interest me, but being able to point the finger and apportion blame, doesn’t. I find this modern need to do so, just doesn’t sit well with me. Things happen in life that no one and nothing can be blamed for it, and that is the end of it. Those involved, regardless of what extent their lives have been damaged or destroyed, they simply have to live with it, alone and without financial support. Yet if there is a tiny speck of evidence that someone can be blamed, suddenly legal action is taken, support networks put in place and financial retribution nearly always follows. It is those situations, that complete imbalance, that I can’t get my head around and leaves me with a dilemma that I have thought about and thought about and can’t find an answer to. If tomorrow they found that PRMS was caused by an accidental mistake by a company, would I, or wouldn’t I jump on the bandwagon and claim my share of the payouts.

On the surface, anyone would say of course you take the money. Without a doubt, money would make my life easier, no worries about getting an electric wheelchair or any other aids I might need in the future. But isn’t an accident just that, something that is done by mistake, something that couldn’t have been avoided? Is it right, that my life would be transformed, but those out there with other forms of MS, or Fibro, another of my conditions, which is impossible to split apart from my PRMS in many of it symptoms, get nothing? The money wouldn’t make my PRMS go away, it wouldn’t make the pain less or suddenly transform my bladder and bowel into ones that work or even stop it from squeezing the air out of me. Money isn’t the answer. or the solution, it’s just a plaster on the surface of a volcano. It would leave me with a dilemma of conscience, one that I don’t think money would fix. It is those words, “accident” and “mistake”, they imply that it wasn’t done on purpose. Clearly, only a madman would do such a thing on purpose and accidents are a fact of all our lives and if it was impossible to foresee, how can or should someone be punished for it?

If a five-year-old where to push a 13-year-old on a swing, which is meant only for children under 10 and that swing were to break, badly injuring both children and breaking the swing, who would you blame? The five-year-old, who pushed it or the older child for sitting on a swing that was made only for smaller children? I can’t help but feel if that happened 30 years ago, no one would be blamed at all, it would be a plain and simple accident, unfortunate but just one of those things. These days, I think it would be totally different, especially if the swing didn’t have written on it clearly stating that the swing wasn’t suitable for anyone over the age of 10, that the older child could have read. At which point the lawyers would enter and take over. If that failed and the accident had happened on land not owned by the parents of either child, that would be their next port of call, as the swing was there without suitable supervision. Should the children not be related, then I could see the family of the younger one suing the family of the older child, as the older one should have known better. All of which to me is total nuts. It doesn’t matter if we are talking about children or big business, it is the same, it was an accident, or does that word no longer exist in our language, if so please remove it from the dictionary forth with.

I can see quite clearly how a company could with great ease have produced 40 years ago, something that as far as science knew, would do no harm to anyone or anything and put it on the market. They had done all of the safeguarding required by the law at the time and everything had passed and it went on sale as safe. If today that product was proved to have been the cause of my PRMS, how does that make it that companies fault? They had done everything possible at the time, and nothing showed the slightest possibility of causing any issues with anyone. If it were you, could you without it causing you a crisis of conscience, then sue that company for your illness? I know this is all hypothetical, but as time goes on, I almost guarantee that with the improvements in science cases like this will start to appear. There were after all people who tried to sue tobacco companies for the deaths of their loved ones, people who started to smoke before the effects were known. Total madness, they should have been suing Sir Walter Raleigh or better still the American Indians who gave it to Columbus. There has to be a point where liability ends and common sense begins. If not, well almost everyone should be suing Italy. As somewhere back in time, I am sure the Romans did something to one of your distant relatives, that wasn’t very nice. Or better still, Mongolia, since so many carry the DNA of Genghis Khan and he really wasn’t nice, or maybe, the financial liability lies with those who carry the DNA as direct relatives.

I often find our modern world a place I don’t understand. I used to think when I heard people saying that, that they were old fogies, past it and without hope. Now I actually understand them. I know without a doubt that I am as connected to the modern world as the next person, but still life escapes me occasionally. We’re not old fogies, we’re just people who are looking at other people with only one question, “Why?”. The longer that I have found myself in this odd position as an observer of life, the more I question. When you are out there part of the hustle and bustle, desperately just trying to make it through yet another day without sinking out of sight, you don’t have time to question. Yes, the odd thing, but I am talking about the luxury of being able to questions everything and anything that comes in sight. That is the only luxury that I have, I can question everything, and I do. There is one thing though that I am sure of and that is, that each of us has to decide for ourselves, what we are prepared to live with and what we want nothing to do with. These days, to me it appears that too many people are willing to say that they have beliefs but aren’t willing to stand up and be counted. It is a stance that I find very odd, especially as this is probably the first point in history, where people aren’t normally killed for they think. The majority of us in the western world have freedom of speech, yet are scared to use it, and even more scared, to declare their total belief of anything that isn’t totally mainstream.

In the past few years, there has been a lot of discussion in the UK about the rights and wrongs as to an opt-in or an opt-out system for organ transplants. As it stands, if you are both on the organ donation transplant list and your next of kin follows those wishes, your organs can be used after your death. It’s sound a simple system, but the problem comes when either of those doesn’t happen. You might want your organs used to save lives, but if your next of kin doesn’t know how you feel, they won’t be. Or if your not on the list, then there is no way that your organs can be touched at all. It is a subject that I have put a lot of thought into and I have to say that I am in total favour of the opt-out scheme. To me it perfect sense, those who don’t want their bodies to be cut up and shared out around the country to change others lives, have the perfect right to say so. Anyone who feels strongly enough about it, are clearly going to opt-out. Unlike an opt-in system, where people just keep putting off and forgetting about it, until it’s too late. What some don’t realise is that it’s not just organs, there is also tissue transplant, something that can be just as life transforming as organs. Eyes, bones, cartilage, tendons and even skin can be donated, but right now, if you haven’t taken the required actions, how does anyone know how you feel about it.

I made my decision many years ago now, I think I was in my early twenties, and nothing has changed it since then. I would be signing up to the opt-out scheme. That may surprise some and I am sure I can already hear the odd brain clicking over “she would think differently if she needed one”, your wrong. I did actually in my early thirties, through my own stupidity, find myself hours off requiring a liver transplant. The hospital staff spent ages arguing with me about the fact I wouldn’t let them put me on the list, luck was on my side and I am still here without anyone else’s liver inside me. To me, if you’re not willing to give, then you can’t expect to receive, it’s as simple as that. I stand by and up for what I believe. I don’t believe that governments, Doctors, families or partners have the right to tell anyone what happens to their bodies. All of us has a conscience it’s there for a reason, but it doesn’t always make life easy. Whatever we do in life, that is the one thing we have to live with regardless of anything else. It is also the one thing that we can’t run away from, hide from or escape, ever.

Please read my blog from 2 years ago today – 30/09/2015 – Could I be right

It seems as though my body is determined to not give me peace, I wasn’t as bad yesterday as I had been on the day before but I was still feeling as though there was no escape from it all. I decided, wisely or not, to take control and to pull myself in to routine regardless or not if it actually wants routine. I woke feeling much as I had done the day before but by the time I had……

5 thoughts on “A matter of conscience

  1. Hello! I just started a blog from the perspective of chronic illness, so I thought I’d search around and find others in the community. That’s how I stumbled upon your beautiful blog. Thank you so, so much your inspiring, nuanced insights. I’ve enjoyed perusing your blog and will look forward to reading more later too. My soul is so stirred by the ways in which you navigate these very difficult challenges with such beauty and authenticity. Hoping and praying that today the symptoms go easy on you. God bless, Sase

    Liked by 1 person

    • Pam.. you stirred my heart in ways that I can’t even put into words. Thank you so, so much for visiting my blog. It meant the world. Much more from me soon when I have a chance to comment back on my site.. but for now, just know that I appreciate you more than you could possibly know. I look fwd to getting to know you better and sharing this journey with you.



    Liked by 1 person

  3. We value all life, regardless of the true consequences of the cost. I agree with you that accidents happen and mistakes are made, which is very different than someone purposely plotting to do harm. Thanks for another interesting essay.

    Liked by 1 person

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