Aiming for Normal

Sarah and I have often said that one of our aims is to keep things as normal as possible, not just because we want Emma's life to remain as close to normal as possible, but also because there is some comfort to "normal" for both of us.

I remember once, quite a few years ago now, when I attended a training course where the delegates were asked to answer the question: What would you do if you knew you only had a year to live? As you'd expect, an awful lot of the answers were along the lines of the familiar "5o things to do before you die" type lists, with quite a few people adding "Leave my job!" in tones of strident rebellion. The thing is, now that I find myself in a similar situation for real, I am not that interested in going for a quick dip with a dolphin (I'm not allowed to swim wearing this pump anyway) or skiing down Everest naked, or any other of those adrenalin fuelled things that you would expect. Yes, I'd like to travel to a few places I haven't seen - I've always fancied India and Japan, as well as the African Safari - and I'd like to perhaps do one bungee jump (although as Sarah has reminded me before when the subject has come up, the harness alone would be too uncomfortable chafing against the wounds I have). But, when I look at it honestly, I think how much I would enjoy just having a "normal" life!

I guess I am lucky to say I have enjoyed the work I do for quite some time now - I really love training and writing courses for me or others to present - so I'm not one of those people who would want to break free from that particular set of chains. And it's fair to say these days that I am not bothered about earning a lot of money either - too much of it seems to me to be a burden, and I have somehow alwaays managed to earn just enough for me to be happy and not have to deny myself or my family too much in the way of either essentials or a few pleasant non essentials. So no, nowadays I would not be answering the question in the way I did in the past. It is more than enough for me to say that I would like to spend as much time as possible with my wife and daughter, to hopefully continue as long as possible to do at least some of the work I love, and to have a life bordering on the mundane. For example, this last Sunday, my sister Sue, my niece Kelly, and her boyfriend Luke came to visit, and there was nothing I could have enjoyed more than the simple walk we all did along the riverside path in the cold autumnal sunshine surrounded by the multi coloured leaves on the trees. To hear my family laughing, and to talk about the future of two young people, is, when I give myself the chance to stop and think about it, one of those delightful little miracles, the likes of which can occur every single day.

So we continue to aim for normal, even though we are all made aware in a number of small ways that things are not normal. For example, I am now able to write this blog on my laptop computer downstairs because I have finally gone and bought myself a wireless router. That is pretty normal, I know. But the reasons for doing it now are that I was finding it increasingly uncomfortable to write on the PC upstairs, due to the fact that I had to kneel whenever I was writing as opposed to sit in the chair, because to sit was simply too painful. In addition to which, I have to be practical and recognise the fact: if my illness continues to develop as it has over the last few weeks, I will in the near future be unable to tackle the stairs at all, and so I had to install the wifi if I want to continue blogging and working. So now, I can stand here in the kitchen, laptop on the worktop, and write in relative comfort.

Or, as another example, as we sit around the TV on a Saturday night, watching a dvd or some reasonable show on the box, I give out the occasional moan, or suddenly have to stand because the position has become too uncomfortable for me to be able to stay put. Every time that happens, both Sarah and Emma look away from the TV screen to me, the concern etched on both their faces, and I am left to think how the mere act of standing has become a potential reminder of the future none of us wants to really have to consider.

Almost every "normal" task has a new dimension of abnormality to it, a constant reminder to both me and my darling girls that unfortunately things are not normal. Should it come to the time when I am permanently wheel chair bound, or (as may be the eventual case) bed bound, the normality will have disappeared entirely. I find that possibility too hard to think about really. Not for the sake of myself, but for the simple fact that both Sarah and Emma are going to have to share the house with a person they love dearly who is physically only a fraction of the person he used to be. I have spoken to a couple of friends who came to visit, and I can talk about my illness and my beliefs about it and the possibility of something miraculous happening for me to recover, but if they raise the subject of how the two people I love most in all the world will cope with me being heavily sedated in the house, or even just lying in bed on the ground floor without heavy sedation as they try to carry on their lives around me, then I just cry, unable to voice what I feel about the pain they would experience in that eventuality. Yet Sarah and I have had to discuss even that, and although my preference would be to be out of the way, in the hospice, Sarah's preference is to have me at home for as long as possible.

That is why, right here and right now, every single thing that I can do that helps to maintain a possibly unreal normality, I will do it. It is why, when I drop something on the floor, I want to pick it up myself - because that would be normal wouldn't it? Or it is whyI am so determined to dress myself, or (as my palliative care doctor describes it) I am so fiercely independent when it comes to my care routines, or why I want to go to Sainsbury's with Sarah to do the weekly shop, or walk into town with Emma when she wants to buy a book, or anything else. It's not all my natural (genetically derived) stubborness. It is my desire to cling to the normal for as long as possible.
I don't really doubt any new set of circumstances will eventually become normal - we humans have a remarkable tendency to adjust to sudden changes and for them to quickly be regarded as the new norm. But I do so crave for the times when I could see my daughter laughing at an episode of TV Burp, or see Sarah smiling at me when she comes home from work, and it not be tinged with a sense of loss.