I warn you know that some of you will disagree with what I am writing today, but this has to be here like all the rest of it as it is a true factor of my life and what MS has made me and others have to think about.
Years ago when I was first diagnosed with MS and I was facing an unknown future with a progressive illness, Adam and I had what I can only describe as one of our rare arguments. We were right at the beginning, with little idea of how quickly or slowly this illness would take, or what it would do, but I felt a need to sit down and discuss something that I had actually put a lot of thought into a long time before and my opinion hadn’t changed. I think we all think about the end of our lives as we edge closer and see more of the elderly world around us. Like many I had visited old peoples homes and seen people sat there with no sign of life there other than they were sat in a chair, and like many I had seen a future I wanted nothing to do with. I don’t remember who the person was now but there had been a major new story about someone who had taken their own life as they had been dieing of a slow debilitating illness that was stealing their mind bit by bit. I at that time sat and thought about it, thought what it would mean to be in that state or worst still to be in the final stages, when you would be locked in a body with no way of communicating, I had decided that there was no way I would want to live that way. It wasn’t a glib thought or something that I couldn’t even find inside me an opposite argument that stood up well enough to give me any doubt.
Adam and I had only been married a couple of years when my MS turned progressive and it was clear from all their test that I was on that downward slope. I don’t remember when or what caused us to talk about it but I was faced with a brick wall that I couldn’t even find a crack in. I tried over several days to get him to understand that I wanted to set up a “Do not Resuscitate” order with my doctor not to take a vile of cyanide there and then. I think at that point even Adam would agree now, that part of the reason I couldn’t get through to him was his age and his lack of real understanding of what the life ahead of me was, I doubt if I would have been any different in my early 20’s, and it was clear it wasn’t an argument that I would win.
A few years ago again because of the News we talked and this time I didn’t even need to argue, he was suddenly on my side. He had by then witnessed what MS was doing, how much pain I had to deal with and how difficult my life was and would be as time went on, at that time I was in my second year of living with a gastric nasal tube as I had lost my ability to eat, although it eventually did come back. I was painfully under weight, had to use a manual wheelchair but that was limited as I had little energy to spare, clearly I was not free to enjoy the life I should have been doing in my early 40’s. We were in agreement, it was a huge step forward but one that we stopped there on, until last night. I was me who brought the subject up and as always it wasn’t easy, it never is easy to talk about the real end of your life, but with in a few words Adam said he had thought it about it a couple of months ago, but hadn’t known how to speak about it with out it sounding as though he was saying, “well it’s time for you to go”. With the clear signs that I am loosing my memory and finding talking and so on harder and harder, that we have now got to take some action, before it is too late and someone tries to say that I don’t have the metal ability to make such a decision. At the grand old age of 51 I have to make decisions about the way I die, not many of us have to really think about it until at least another 10 years time, if not much later these days. I have no doubt what so ever that if it means I might die a few years earlier than I have to, I would rather die when I wasn’t a vegetable, either sat in a chair or lain in a bed. I know that I will be taking a risk, a risk that something might happen the day after I sign it and that will be it, but I have to, as I am not allowed in this country to choose my own time and place of going. If the law was different then my choice would be different, I wouldn’t sign a DNR, not yet as I would know that what I needed to give permission for, was for me to decide that I can’t take any more and I want to call it a day.
It is a huge argument that no one seems to agree on, but clearly I am still able to decided for myself but due to my illness I can’t wait and take an overdose of something as I might not be able to do that, Adam helping me would mean him going to jail, so what choice is left. A DNR, with the risk attached that I might have an accident that I could get through, but my heart could stop, but I have signed a piece of paper saying let me die. It is a risk but the faced with that and the horror of where I will end, it is an easy choice to make. As I said it isn’t something many of you will agree with or understand, but it’s the way our world is and we all live and die within the laws that it makes.
Now, well now I have to find the forms and make sure my wishes are known in every place that it matters and hope that possible accident doesn’t happen, until I have lost all of my marbles, a strange legal game of roulette.