It’s just a weekend, another one out of a lifetime of weekends. Another day, that’s all life really is one day, followed by another day, yet it’s the thing that we hold onto, like nothing else, it’s our life. To an outsider, to someone who knows nothing about me, they might easily wonder what on earth am I holding on to. Bluntly, “What is there left to hold on for?” That exact wording and feeling behind that question would vary wildly depending on the age of the questioner. To a child, someone who is aged 54 should be dead anyway, they’re too old for there to be a point to their life. I can with ease remember thinking when I was a teenager, that I would be dead by the time I was 21. 21 was horribly old, past it and useless. I had seen Adults who went past that point and their lives seemed so dull, just drudgery. They never seemed to have fun, all they did was work or sit around their houses, surely that was a pointless existence. 21 was a good age to die. It was the age when your body was an adult, but not damaged by wrinkles or the other horrid things that life did to them. At 21 you were still young enough to be a beautiful corpse. Yes, I was an odd child for thinking as far as a corpse, but the rest, no, I knew many who felt that way about growing up.

At the age of 21, I had something that made my age, totally unimportant, I was a mother. My age, what I did, in fact, everything about me, no longer mattered, it was all about her, my perfect little daughter. I had grown up and somehow, I wasn’t old, I was just me. I still couldn’t imagine ever being old, not even 54, nothing to do with my childhood belief that life that old was pointless, but this was me, I was beyond that, I couldn’t grow old. I hadn’t even made it to 21 when I had already made up my mind, that no one should suffer, that we had a right to decide, just how much we could take. That ultimately, we should be allowed to call life to a halt, when we were ready. Having watched my first born fade and die, I understood better than many my age, just what death meant and just what suffering was. I expect, that if I had seen someone with as many things wrong with them as I have now, and who was housebound. I guess, I would have been wondering, “why?”, “Why haven’t they called an end to it? What could they possibly have, to stay on any longer for?”.

Throughout our life, more dependent on what is happening to us, than the true bigger picture, we look at the chronically ill and the dying in different ways. I can understand many might wondering what value, or what purpose my life now has and that doesn’t bother me in the slightest. It is one of those things that I have frequently thought about throughout my life, not just towards myself but to others as well, as what else is pity, other than looking at someone and thinking, what is the point? We pity because what we are seeing is a situation we ourselves couldn’t cope with, or at least believe we couldn’t. So, OK, people can’t see me, but that is probably the bit that makes my situation in life pitiful in the eyes of others, and I get that. I never once remember thinking about what it would truly be like to be housebound, not until I started to see that it was more than likely my future. I freely admit that the whole idea terrified me at first, but not maybe for the instant things that the youngsters out there might think of. They would worry most about the loss of all the social activities, the going to the movies, walking around the shops and spending time with their friends. I feared losing my job and not being able to pay the mortgage, that was my first fear and it terrified me. In fact, that was my very first thought when I first had it suggested that my MRI scan meant that I had MS. Not about the shortened life, the pain or anything to do with my health at all, it was all about how I was going to keep working.

I had been brought up to believe that we all had to do our bit in society, have a job, pay our taxes and generally do the things that keep the world’s markets ticking over. Sitting at home, wasn’t acceptable unless you had a child, then your full-time job was being a Mum, otherwise, you had to work. I know not everyone will totally agree with all of that, but the majority will agree with the first bit, you have to have a job, if you don’t, well your sponging off the state. The tax paying majority are pretty unforgiving, unless, they know someone who is a genuine case, but still, some aren’t convinced about the rest of us. I’m not sure what the exact split would be, but there are clear sectors. Those who pity, those who care, those who doubt and those who can’t see the point of us at all. I remember hearing someone, a long time before I was truly sick, saying to someone else, something along the lines of “Wouldn’t they be better off dead?”, they were talking about someone in a wheelchair. It stuck in my mind because it shocked me, I had never heard, or even come across, anyone, who thought that way before and I couldn’t believe, that anyone could. I was young, I know better now. Something on TV the other day brought it back and it triggered a run of thoughts, hence this post.

How we measure what is a good life, changes throughout our lives, from our teenage years on. As I said, I can easily see an outsider wondering what I am holding on for. It’s not as though there is a nice little equation that says this is a life worth living or not. No sliding scale or even anything to measure it against, other than our own personal experiences. Just as our viewpoint on other people’s lives changes, so does ours on our own, but when it comes to our own, it is far more subtle. It doesn’t matter what happens to us, we have a drive inside us to keep going. Long-term readers will know that there have been times in my life, where I lost sight of that drive totally, then, life wasn’t ready to give up on me, hence why I’m still here. Nearly 15 years ago, at a time when I thought my future had never been brighter, I was handed a death sentence and another just over 2 years ago. It is the oddest thing being told that life is giving up on you, and the ultimate proof it is the most contrary thing that exists. We might think that we are in control of it, or at the very least that we can take control of it, but we can’t. We might think that if we were to lose our health, but locked inside our homes that time would drag and all point would be lost, but it isn’t. It doesn’t matter where we are in life, what we have or what we don’t have, life will go on as long as it wants to and as long as we have someone we love, someone we can’t bear to be without, we will hold it tightly.

I still believe what I thought when I was 21, that no one should suffer and that we should have the final say, but once you are here, in that pain and at times suffering, we still have much to live for. Living with a ticking clock, having to swallow handfuls of drugs just to get through the next few hours, isn’t the worst thing that can ever happen to you. Oddly, just like the rest of life, there is much to learn, much to enjoy and much that means I still greet the new day with a smile. None of us can judge the life of another. None of us have the right or the knowledge to do such a thing. Both of those statements work both ways, only I have the right to judge my life and only I have the knowledge with which to do so. It’s not that I don’t want to tell you, or that it is a secret of some sort, it’s that I can’t. I could give you a list as long as my arm, at the top of which without a doubt would be Adam, but even my entire list, wouldn’t explain it. Ultimately, I don’t feel any different about living than I did 15 years ago, before they had even told me, I was in it’s closing phases. Even now, the truest thing I have ever heard said is “Life is what we make of it”.

Please read my blog from 2 years ago today – 29/11/2013 – One sided worlds

I woke early this morning as I was desperate to go to the loo, I really hate it when that happens especially as getting out of my bed without using the elevator although still possible is painful, but using the …..