There are things I think of to drive me on, like the time when a friend of Liv’s and mine down from Glasgow to stay and I fell over the table. In the old days he would have said, ‘Get up you clumsy fuck!’ But now he was being so kind to me, so sympathetic, and God I was embarrassed – mortified…
This could also be used to describe a phrase of mine about being positively negative, a phrase that I have used countless times to describe my attitude to my exercises. For example I could just think about the great time we all had together. Or I could choose to think about the moment that I fell over. I think of that and it forces me on with the physio, another step, another step…
Although it’s not straightforward because then I get so tired I can’t focus. Nothing proceeds in a straight line. Take walking, for example – something I found so simple to do in the past – now I need to think about literally every step. Not just when to move my right foot or when to move my left, I also need to think about each component of the movement… I need to think about each component of moving the left leg for instance: ensuring I get my heel to strike the ground first , extending or dorsiflexing my ankle i.e. lifting my toes and foot up (and at the same time remembering not to lift my toes too much otherwise they do not contribute to my balance or stability) but equally I need to gently plantarflex my ankle and let my foot touch the floor during mid-stance, so that my foot is getting the most contact with the ground to aide my balance during the stance phase. Then there is the knee – and what I need to think about here is to bend it slightly when my heel strikes the ground, but I cannot bend it too much … And as if that’s not enough to be dealing with, I also have to think about the propulsion phase, which is not just a matter of reversing everything I have just done. I also need to ensure I am rolling over my left foot and getting my foot and toes into the right position so they are ready for the push off, with my calf contracting strongly. During this whole process I also have to completely ignore the wavy feeling I get when I am standing up and walking, which is the sense I have that I am wobbling all over the place even though I am told that I’m standing and walking dead straight … and whilst I am trying desperately to ignore this sensation, I am also having to concentrate unnaturally intensively onto the other senses I am getting from my ankle and foot and knee.
And still during this whole process I am expected to hold a conversation!
In many ways I think it is my deeply-rooted and genuine love of a challenge that I love walking so much now. In my hospital bed, when I realised initially how buggered I was, I distinctly remember thinking that it was a good thing – I’d have so much to work on that I’d never get bored…?!?! How ridiculous is that. Unfortunately, I turned out to be wrong on that front, and now I am just so bored of having to work so hard just to exist.
I know I’m so much better even than I was just a month ago, but my god all the extra work I need to do endlessly just to appear as if I am functioning normally, now I’m needing to yell metaphorically at my body to get it to do the most simple of movements. And in many ways, this is why it is much easier for me to do things in complete silence and with a degree of sensory deprivation.
For all the pain and difficulty and embarrassment, this whole journey towards walking again has been worth it. These days I go out for a four-mile run every day and today I got my fastest time ever – 47 minutes. Granted it’s not going to challenge Usain Bolt, but it’s pretty good for someone who was told he’d never get out of a wheelchair.
now this whole experience that I would not wish upon any one which also brings me to my next most important point; for any one reading this hoping to try to find out my tips on surviving or coping with a brain injury unless there is any one reading this for purely wrist slitting reasons well my only tip would be TO NOT to HAVE ONE!; which also brings me to having to live with carers or scarers as I prefer to call them it is absolutely vital that you develop some form of relationship with each of them because they all come in different sizes some barely tall enough to get caught in a cat flap and some are so so emaciated that you worry that they may get assaulted in the street by people throwing food at them and also it has confirmed that I am a fatist but I reckon this is a hell of a lot better than being a racist or homophobic(but I would- I guess ) [ and there is also the scarer whom I call mr biscuit and really I should just be getting cross with myself because I went against my own mantra of one should never trust a skinny chef. And hence I call him mr. biscuit because he cooked our turkey till it was as dry as a biscuit but he also acknowledged that he turkey meat can often be very dry when it is cooked and he subsequently mentioned all of these techniques one could employ to ensure that your turkey did not dry out too much none of which he patently used and whilst sitting their regailing me with all of these methods to prevent your turkey from drying out too much. Sure enough the oven was meanwhile blasting our turkey to complete dryness such that it was as dry as a biscuit. And I should be just getting cross at myself because I went against st my own mantra of one should never trust skinny chef and I am clearly no expert but I preferred the best and most simple way to ensure that the turkey meat does not end up too dry. It is just ensure you keep checking it and perhaps just ever so slightly undercook it whilst also checking that you have a full supply of loo roll in the house. depending on how well you know the farmer who produces the turkey and this will ensure it does not dry out too much hence why I refer to him as Mr biscuit and then there is the Hungarian scarer who is so gullible that I had him believing that my very gentle and reserved parents were into cage fighting and I also had him believing that they were going off to get a tattoo now I think this ex chef may be plying his trade in making turkey biscuits which I cannot imagine gracing the shelves of any self- respecting supermarket but if you do ever come across a horrendously skinny man in Cornwall can you spare a thought for mr. biscuit which brings me to physio and I have to say physio is all about getting your body to work again and to that end to work again against the new limitations the brain injury has put upon you as best it can such that because of the brain injury your flexor muscles become overactive ; i.e. the muscles that bend your limbs at the joints and a good physio will tell you the best way to overcome that muscle’s overactivity and which
Then we might go on to Sainsbury’s to pick up a few things. This I find depressing. Shopping was always my Least favourite things
We come back home for lunch. Food is one of the few pleasures that remain to me, which is why I have to be careful what I eat. Liv tells me I have to lose weight to make it easier for me to move around – she’s right, but on the other hand I have to have some enjoyment in life. Some people lose their sense of taste and of smell and also I do wonder why it is that you need to have a sense of smell to be able to taste and yet some of the most disgusting smells such as camembert can also taste so fantastic but it smells like the skin of a peeled rabbit. – thank God that hasn’t happened to me. Aran and Jerry, another of my carers, are both trained as chefs so we do some cooking together. We made profiteroles the other day – Bertie’s favourite pudding.
After lunch I sit. I used to be a hyperactive person. My whole personality was predicated on doing things. Such as – working in the garden, chopping logs, building a climbing frame for the children; or doctoring, or sport – but now, I sit. I can see that I have to formulate other ways of having fun, but as yet, I’ll be honest, I haven’t come up with many.
I suppose I am depressed. Anti-depressants have been suggested, but I don’t want to take them because they’ll not going to treat the cause, are they? They’re only going to treat the symptoms. I need to be independent, then the depression will lift.
I feel more myself when Liv and I get some time on our own together. The other day we went down to St Mawes together in a howling gale. We were joking that we should set up a charity – the Pathetic limping Tillyard Charity perhaps.
The evenings, I’m sorry to say, are the worst time of all. The kids come back from school, tired, irritated, and they are cheeky to Liv. I try to tell them off and they don’t listen. They’re just being normal kids growing up but I feel so angry because I just have to sit there and observe all of this, they don’t pay any attention if I try to intervene.
If it’s one on one then we can connect better. I try to play games with them and to think of things that we can do together. Sometimes Bertie and I can talk about science, and Lila likes to draw and make things… Florence isn’t really aware any of this is going on. It’s normal for her to have me sitting there. But in the evenings, everyone is just worn out from a long day. It descends into farce and then usually the carers bring me over here to the barn at about 9.15. We’re like Dirty Rotten Scoundrels over here.
I often go to bed quite early. It’s a terrible thing to say, but sometimes I’m desperate to go to bed to get away from the carers. Can you imagine what an intimate relationship it is with them? They are kind, they are really good at their job – and I know how hard the job must be. But they haven’t chosen any more than I have to be friends. It’s like an arranged marriage – even if you get on with them really well there’s a resentment there, a powerlessness. More than that, it just makes me feel inadequate.
I fall asleep, hoping against hope that the following morning I will somehow miraculously be better…