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, and there was one concision where I weighed in at a tenth of a tonne 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. Arran 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. My day today starts from the moment I wake up unsurprisingly well from the that moment I get up I go to the shaver and I use my electric shaver so that I am attempting to shake the living daylights:out of the endolymph sloshing about in my semi-circular canals in my middle ear ( or to put it more correctly I do my vestibular ocular exercises ) that are causing all of my wavy perceptual problems, and so it is that I am almost making myself sick and unsteady to boot , in the kitchen first thing in the morning whilst shaving just so I can attempt to educate my brain to what is normal, and then at night I brush my teeth trying to stand just on my left leg only and in-between morning and night I have my writing to work on and also my memory and then having done all of this so I hope you can see what I mean by on the go all the time and then I have all the preparing my vegetables and using my left hand .
oh yes 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 with me being Ruprecht.
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.