Sometimes I find myself with so many words inside me that I cant see past them, through them or even around them, my head spins as I try to find out just what it is these dammed words are actually trying to tell me, or is it trying to tell you. After all it is the reader that words are really for, rather than the writer. Show me the person who writes, then reads over and over again, returning not just minutes but years later to refresh their enjoyment, but I can show you many who have reread and reread their favourite book again and again. Not one word that I have every written has been truly written for others, my words arrive so quickly and flow faster than I can ever type them, they are my thoughts just as they appear and typed quickly before they vanish. Yes I know other read them but that isnt their purpose, they are here to get all those words out of my mind, as otherwise I believe that my head would explode with thoughts that feel as though they could so easily destroy me. Looking backwards my life has been lived at a thousand miles per hour and even now I still cant feel any change, despite in truth having little to nothing happening in my days at all.
When you have that time limit of your existence there right in front of you, it really does change absolutely everything. Suddenly there is this huge desire to get every second of every thought you have ever had, or could ever possibly have recorded before there is no longer any way, or possibly not even anyway they can be. I never thought that I would feel this way or even think this way, my life expectancy like most people wasnt really considered. When you are diagnosed with a chronic illness you dont actually think about how long, or how soon, you think about how will I. Chronic illness doesnt always kill, most just make you wish they did and that is actually the really hellish thing about them, you are stuck with a body that wont let you live your life, but doesnt even have the decency to bring it all to an end. So you get on with it, you get up each day and go to sleep each night, like everyone else you go to work, clean your home, cook your meals and you do it all with this extra burden of a body that is trying to make life as difficult as it can. Yes you know that you may well not live as long as you might if you hadnt been diagnosed with the hell giver you have to live with, but you will still live, often wishing it would all come to an end, but still being glad to wake the next day. Life is life and it still is a gift to be thankful for, even on your worst day there is something inside that keeps you going, keeps you doing all that you can, even thought time means that gets less and less. Then this extremely nice doctor who is sat opposite to you in a clean hospital office gives you a totally different diagnosis, this one isnt going to make your life slowly more and more of a trial, oh it will do that too but this one has a very different goal, this one will kill you.
Being told to put a mark in your diary as the point that life ends isnt what you expect, not when you have had a lifetime of diagnosis coming back as nothing wrong, followed with months of waiting and months of more tests, suddenly you have a diagnosis within an hour of entering the building, something that just doesnt happen. Strangely I wasnt shocked; I didnt shed one single tear, which is usually my reaction to good news, so how come I had none for bad news. I felt incredibly calm about the whole thing; this man was telling me that I wasnt going to live for any more than 10 years if I was lucky and I took the news totally calmly and in my stride. I remember being more concerned for how Adam was taking the news and what was going on inside his head, so when he asked a question he had, I gave the doctor my permission to answer anything he wanted to know. I didnt ask or even think of answering any of the things he did, for once I wasnt looking for the detail, the simple fact that there was an end written clearly and one that I could comprehend was all I needed. I was calm for one reason and one reason only, I was glad, I now knew there was really an end out there, I wasnt going to stuck inside a body that had no other desire other than to torture me for what could easily have been another 30 to 40 years, I had a limit to it all, just 10 years. The timescale he gave me wasnt the important bit, what was, was simply the fact there now was one.
I know that many will find that hard to understand, but the reasons have been swirling around inside my head for all too many years, it isnt something new, just at last with a goal to head for. I have now lived for around 30 years already and I know how my health has headed downwards over all of those years, speeding up with every year. The future I have been facing wasnt something that I really wanted to think about but I had little choice, daily my body tells me just how little it can really do and for every step down, it has increased the pain upwards and all that could be done for me is simply more and more drugs that take away more and more of me as a person. Without the new condition, well I would say that its a fair prognosis to say that in 10 years time my MS would have me bedbound, interaction with the world would be little to none and my best friend would be the same one that took the pain away but also took me with it. Being told that I was dying was in a strange way a wonderful gift. The tears that eventually appeared were not for me, they were for those I love, but grief often is, I like everyone else has little desire to die before I have to, but when the choice is either being a drugged zombie or free from it all, well for me the choice is easy.
I doubt it will be of any surprise to those who have read my blog for a while there is one thing that I am still to this very minute angry that this country makes impossible and that is the choice to die when you want to. There is no doubt in my mind that every single one of us knows when life has lost it purpose and its pleasure, yet unbelievably we are not allowed the simple choice to call it a day. I dont like the comparison but it is a totally true one, we wouldnt let any animal suffer, they would be given what is called a compassionate and humane death, but still humans have to suffer. I simply dont understand it. At this second the law says that no one is allowed to assist someone to end it all, which is called murder and so all too many face a problem of timing. You have to be able to administrate what every method of suicide you can acquire yourself, which forces all too many who take this course into dying long before they really want to, simply to protect their families. All too many also get it wrong landing themselves in a worse position than before, then totally unable to complete what they started. I have thought this through over and over again, but no matter which way I look at it, I still think the law is totally wrong and the argument of protecting people is actually killing just as many before they would want to go. I dont understand how anyone can see it as wrong and just as we are allowed to request a DNR should the situation occur why cant we equally set up a form that proves this is our final choice, should the situation apply while we are still mentally able to make the decision, therefore removing the horrors that many families are facing right now at this moment.
I started this journey towards the end even before I knew the end was really there, well we dont ever want to admit we are fragile, we are all going to go on forever and possibly even longer. Which is where the first note of ifs and buts appear, we dont want to be old, just to live forever. No one wants those wrinkles and grey hair, even less the pale frail body that doesnt have the strength beyond just sitting in a chair, no we will be the first person to live to be 100 and still managing to look and act as a teenager, the perfect path in life, all the energy, the flat stomach and breasts that dont just sort of hang there, we are going to approach age with the wisdom and none of the horrors. Imagine still having all the pluses but with no mortgage or young children, no more having to go to work as you are now living on a pension, imagine what you could then do. But this is the real world, this is the place where we all live, its not a fairytale, its stark reality and that reality means we will die. I have no fear of pain, I live with it daily, what I fear are the word in my mind, swirling around with no way of getting them out, not even being able to say them, to share them, for my words to be forever locked where no one can even be sure they are there.