We can’t go back

The lead up to Christmas used to be my favourite time of you, unlike many, I wasn’t happier than buying presents for others. I took great joy in scouring the web for hours, for just one thing, that item that when I saw it, I knew they would love it. In fact, I would have been almost finished by this point in November, after all, there is so much to do between now and the day they would be opened. I was never content in just buying something, those presents, had to be constructed into the ultimate parcels, way beyond just a gift. Wrapped perfectly, no awkward corners or bulky folds, no layers of tape, just the least possible to hold them together and that was just the start. Then came the decorated with ribbons, small tree decorations, glitter, beads and anything else that I could add, just to make it that bit more special. To me, when a gift is placed in front of you, it shouldn’t be a case of ripping off the paper, the whole excitement and anticipation, should build. On first sight, it should be awe at the beauty, the detail and the care that clearly went into what is after all, a Christmas work of art. The sprigs of flowers and foliage, the ribbon arrangments and Christmas favours, longing to be kept with the same love as they were given. Deconstructed, into smaller sections, I have seen them appear as parts of Christmas displays in following years, hanging from trees, set over mirrors or picture, a reminder of the gift they once adorned. A gift is an experience, part of what Christmas is about and once the decoration is removed, you can eventually uncover the present within. It could easily take an hour for me to just wrap one present, and I hoped at least 3 or 4 minutes for the recipient to actually open it. I didn’t care whether it was a joke gift or the main event, every present was wrapped with the same care and the same love. The work that it took didn’t bother me, not until my dexterity started to fail and eventually the point was reached when I had to admit I was defeated. The year before I was made redundant, the present that were given out to friends and families, disappointed me so badly that I felt bad about even giving them. The contents, they were as good as ever, but their whole appearance was just wrong. I had been struggling for the previous 3 years, to decorate them at all, and each year, they just got worse. The next year, we decided that presents had to stop altogether, finances, just wouldn’t allow.

So here I am, at the time of year when I would be have been sat planning out in detail where every decoration will go around the house. What new ones will be needed to complete the look I am going for and sourcing an array of items to adorn my home and to give away with love, and I’m doing none of it. From what I have just said, you would think that I miss it all with a passion, oddly, I don’t. I miss it, in the same way, that I miss being ten years old, and spending my summer holidays in the swimming pool, or those precious few months after Adam and I met. Throughout my illness, as different activities have slowly become impossible, I have had people constantly say to me, “but you must miss it?”, it doesn’t matter what they were talking about, the answer is always “No”. For me at least, I have found that I quite honestly don’t miss anything that I can’t do, including going out. For some reason, “missing” isn’t a feeling I have, they are memories, just as being a 10-year-old is a memory, not something you can really “miss”, as life moves on. I doubt very much if it is just me that feels this way, I am sure there are many, but it is one of those things we don’t often talk about.

To be able to turn around to anyone and say, “I don’t miss a thing”, sound one of two things. Firstly, that they may think that I’m just saying it, to make them feel better about going out there without me as I’m perfectly happy where I am. Secondly, that I’m lying, trying to deceive myself, that I’m hiding from the truth, as how can anyone not miss everything they once had and once clearly enjoyed. I know how people’s brains work and the one thing, that will never happen is that they will take it, for exactly what it is, just a fact. I think the time I was asked it the most, was during the three years that eating was almost impossible. Just like everything else in life, you get used to it amazingly quickly. Having my gastric tube meant I was fed and I could stop worrying about the fact I was disappearing almost daily. Once that was dealt with, food meant little, I was being fed. Once in a blue moon, I would see something I wanted to eat, if I did, I tried, rarely managing more than a couple of mouthfuls. Most of the time, that satisfied my want, as I had had the taste experience and it was that, more than the food itself that I wanted.

Our world is so driven by the marketing man, that most people, find it almost impossible to believe that anyone, couldn’t actually not want any of the things that they offer. Which is why, I wrote the first paragraph as that was a very personal joy, something no one told me to do, not something I bought into, but something that came from me. If I can honestly say, that despite how wonderful it was, I actually don’t miss it, then hopefully, I am now starting to get through to the doubters. It doesn’t matter what it is, what joy, pleasure or pastime, we learn to live without them when our bodies decide that we are no longer capable. Add in, that the further away we get from the last time we tasted, felt or experienced something and the less we even remember it. There is a memory there, but tell me in all honesty, do you remember every day of your first year at school? No, you don’t, so why would I remember or long for things that I lost 5, 10, or 15 years ago. Life goes on, our memories fade and our desire to do them fades as well. If it didn’t, we would all still be bouncing around our gardens on polls with springs in them, and the last marketing many would have gone bankrupt years ago. There is always something new, something that replaces and something that compensates, even when you don’t believe that is possible in any way.

Ask yourself, what was your life like 8 years ago today? Where were you, what were you doing, do you remember at all beyond the general? Unbeknown to me, I was enjoying my final handful of days at work. I used to take 3 weeks off to cover through to January, the three weeks prior to that, I worked only 4 days a week. This was my last few weeks of freedom as in that January, my life would change forever, I was going to lose the use of my left hand and the start of my life indoors was about to begin. 8 years ago, was the first time that I struggled with those gifts, but the details, I don’t remember, so how can I miss, what isn’t there. If I could have a Christmas gift this year, it wouldn’t be to go back, but to be given something that would help me go on. The past is gone, it’s over, it’s our futures that matter and no matter what you do, you can’t recapture a memory, just make new ones.


Please read my blog from 2 years ago today – 27/11/2013 – Change the system

So many people say how much they have been helped by reading my blog as they have found a voice that says what the feel and relays the all the things that go along…..

What’s missing…..?

I woke this morning as exhausted as I was when I went to bed, but at least I woke once more pain free in my back but not quite so comfortable in my lungs as yesterday. So pushing myself to have my shower just after Adam went to work, well might sound rather odd, but I am hoping that if I push myself this morning to stay up to time with my normal routine I will be able to have my full 2 hours this afternoon, rather than a short nap followed by a difficult shower. It often feels as thought my life is always in flux, always a case of trial and error, just in the hope of finding that slight improvement, that tiny thing that makes everything else easier. I guess that everyone’s life is, it’s just mine are now more focused and centred on a small possible range of changes, rather than the vastness of life in the working world. My choices are as small as like this morning when I went for my shower, was the house warm enough, did I need to put the fire on so that I would be able to dry myself in front of it, instead of freezing in the bathroom. Was my scalp up to having hot water fired at it from the shower head, or was I once more going to have to play with it until I managed to remove the fine streams and replace them with a flow more like a tap. Question and answer, question and answer and all just to work out how I was going to start my day. I remember a time when the only thing I had to consider was just how long could I spend in there, not if I could actually stand for a while or did I really need to sit through out, believe me it’s not the best place when it comes to getting clean. Going back in time is something that I know is impossible but if I could, it wouldn’t be to change things, it would be to just go back and enjoy all those things that I took for granted and even moaned about at the time, little knowing that my moans were about nothing.

It’s strange the things that you want to do when you can’t, all to often I find myself wanting to do the things I never really made the time to do when I could. I used to have access to horse just down the road from my home in Rhu, it belonged to a family who’s twins were heading up to their A levels and didn’t have the time to exercise it as much as they should. I didn’t know any of that the day I knocked on their door and asked if there was any chance of being able to ride him, all I knew was that I spoke to Beenie daily and I had nothing to loose by asking. For three months Beenie and I spent two hours together once a week riding out along the beach and the grassy verge that ran for 4 miles to the Navy base. I can still remember just how wonderful it was to have that opportunity, how much I loved especially the ride home as Beenie knew that at the end of that gallop he would be fed. There is nothing quite like racing the traffic on the near by road and having that feeling of flying, but it had to stop when the local nursery school announced that my son could no longer attend, he was just to disruptive. I don’t blame him now any more than I did then, I blame myself for not fighting for both of us just that bit harder. I never again got the opportunity to ride regularly, not many people do, but it is one of those things that I wish and dream about more and more. just being able to spend time with horses is the most wonderful experience and to have one that is happy to have you on their back, well it is an honour. If I could go back in time, I’d go a back to a point when I could ride again, even if it was for only one more time.

You learn to adapt to being housebound and to what you can and can’t do, but silly things, things that are usually impossible are the things that appear in your dreams. I don’t ever dream of going back to work, or just going out to the pub or a cafe, I dream of things that aren’t everyday, as everyday somehow no longer seems important. I long to be able to swim for hours, or go ice skating again, long for the physical things that I have no way of ever doing again. No matter how well planned or thought through they are all gone. Now I plan for everyday events with more care than I ever planned any of my missing pleasures, life is strange to say the least. If it wasn’t for those few truly special to me times, I can honestly say I miss nothing, no matter how much my health takes away, I still haven’t lost the important things, so what do I have to miss?

One of the first questions people who don’t know me is “don’t you miss….?”, their personal choice always changes but for some reason everyone expects me to miss the things they think they will miss, but they wouldn’t. I can say that just isn’t the way it is, everything changes slowly and something inside changes to, I’m not sure how to put it into words but trust me, you don’t miss, it is almost as thought your mind sets up some kind of buffer that protects you, I guess mother nature knows exactly how to protect us and she does it well, if you trust and allow her to do it.