It all matters

Well here it is, another Christmas, another year almost ticked to it’s close. It is normal at this time of year, to look back over the year before, and analyse its highs and lows, something that being so ill you are housebound, is really hard to do, as there really aren’t that many. In many ways, that is a good thing, because it proves just how well my routine has worked for me. I have until the past month, held my health reasonably steady. Yes, I know I had pneumonia in July, but that only lasted two weeks in total. Two weeks out of 48 is amazingly good if you ask me, and no, today is not going to be a day, where I sit here pouring out just how wild my sensations have been in the past 24 hours. All I’m going to say about them is, they’re still getting worse. Today is Christmas day, it’s a day forever changed by my health. All you have to do is read my posts of Christmas past, to see that I still miss badly what I can no longer have, that’s the tough thing about being human, we always want what we can’t have. Our health takes so much away from us, and it is so easy to sit and wallow over all those things that have gone, what’s not so easy, is to celebrate just what we have.

I believe, that for all I have lost, I have also gained. I’ve gained things that I don’t think, I would at this point in my life, have been aware of as intensely as I am. There is one universal thing, that I have heard from every chronically ill person I have ever spoken with, and that is the total understanding, just how important life is. It is probably the saddest truth of all life, that we have to be threatened with losing it, before we realise, just how much we love it. The other evening, Adam showed me some old photo’s he had found, whilst tidying up his dump in the kitchen. I know he thought that I was only half looking, but I was looking, I just didn’t want to. What he showed me, were pictures of me, when we were in Arran. Most were taken when I wasn’t looking, as I hate camera’s with a passion. Especially, when I haven’t done my hair perfectly, or my make up on, something that’s not truly possible, when your camping. One showed me standing almost silhouetted against a darkened sky. As always, I was totally dressed in black, and my hair, at that point oddly it’s natural colour of dark sandy blond. The wind was throwing my hair out behind me, and the whole look was somewhat dramatic, the wild women of the land look. I actually remember standing there, looking out over the dramatic scenery and looking forward to our days hiking through it. I also remember, that despite being surrounded by nature, in a place I totally loved, I just didn’t get it.

I thought I did, I honestly believed that life couldn’t have been better. I was in this amazing place, with someone I was deeply in love with and already knew, I would never be apart from ever again. I had a job I loved, a future that looked nothing but rosy, but I still didn’t get it. I thought that life had taught me all the major lessons that any of us learns. I had seen the worst of people, and the best. From those, who used love as a weapon, to those who use weapons as love. I’d lived in different places, and in every financial level that I could think of. I’d learned the hard way, just how painful life could be, and how wonderful it could feel as well, but I still didn’t really get it. I was missing one thing, I didn’t know that I was, because I didn’t even know existed. I thought, that the death of my son had taught me, how fragile life was and how important it was, but even that didn’t quite get there. Maybe, the fact I was just 19, meant I wasn’t quite mature enough, to take the deeper message and run with it. I know I was at that time, so locked up in pain that was being constantly inflicted upon me, to see it, whatever it was, I missed it.

I have always believed totally, that you can’t manage to live with chronic illness until you have accepted it. I know, that is a belief that is shared by the majority. Fight it, and it will fight you harder than you would believe. I accepted my health nearly 15 years ago now and I thought for a very long time, that that was all that was needed. It probably is, but for me, it was only half the story, I still hadn’t quite taken that final step, the one I now know was missing. I don’t know exactly when it happened, probably, around the time that I was told I had about 10 years to live. Hearing such things, is inclined to make you sit and notice the world again. It also takes you a little time to settle to the fact that that is just the way it is, and you had better make the most of it. Being housebound, has a sort of limiting effect, but maybe, it also had a lot to do with the fact that I embraced my health, not just accepted, but embraced it as I would an old friend. If we were going to live together, we had to get on with each other.

So what was it I missed, well it’s incredibly simple, I didn’t have the total love of life, the understanding of its depth and its importance. I’m not just talking about loving those around you, I got that bit. I totally understood the love of people, even the love of things, but life is neither. It’s about loving and living every breath that you take, even if that breath is painful. Every step, even if it means that step will leave you on the ground unable to stand. Each painful action, being loved as much as every joyful one. It’s about realising the true value and importance of others, even those you’ll never meet. It’s about learning there isn’t a single element of any life, that isn’t important, in make life what it is. In seeing every texture, every ripple and every speck of everything, because it matters. Or in simpler term, that your part of something so amazing and so important, that it doesn’t matter what happens, good or bad, your quite simply, lucky, to be able to know about, any of it. Without a doubt, if I had understood this sooner, my life might have been very different, I might have not just seen those mountains, I might have loved every inch of them more than I did, but I can’t and wouldn’t change a thing.

I might not be having one of those flashy Christmas’s of old, no Christmas tree, no piles of presents, or a table groaning with the weight of food. No noisy families, no flashing lights, or even the candles that once burning in every room, but oddly, I am so much happier without it all. There is no stress, no worry and nothing false in any way, about being able to say, “Happy Christmas”, to each, and every, single, one of you!


Please read my blog from 2 years ago today – 25/12/2013 – A visit with a kick

You would almost think this was the weekend, yes the room is once more filled with the echoing sound of snoring. Yesterday went well, Teressa and John arrived as I thought they would around 4 o’clock…..





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