Today, I went home. Its funny how I say that word so easily when I have never lived at what was Grandma’s flat. More than that, I don’t feel a kinship to it that much that makes me dream of it being or becoming my ‘home’. And yet it is, and it is because everything that I associate with home is there.
Home to me simply means comfort. My home is and always will be a place in which I feel most comfortable. Actually that has come in my life to be far more about the person I have been with as opposed to the actual environment in which I am living. I don’t know how much this will be true for the rest of my life. I certainly sense that in the future the actual environmental surroundings will not only become more important but actually start to reflect‘comfortable’ environs much more. For now, though, home is where I feel comfortable and comfort relies on being held by Mum. Not simply her arms but more specifically her aura. She has the phenomenal capacity to simply hold a space in this world for me alone wherein I have room to breathe, space to see and be rested within. Forgive me if this sounds weird and abstract but she holds enough air around me to be the full me…no that doesn’t express what I mean.
Bear with me:
We all occupy a certain amount of space within this life. Physically – in terms of molecules and cells. Mum has the unique gift of walking beside me keeping enough space for the amount of cells I will come to have. She doesn’t just see and treat me as the physical mass that I am now but actually, without doing anything specific or pressurising or waiting for me to fulfil it, she holds open enough cells and molecule space for me to feel as if I am all there – even the me cells that aren’t quite made flesh yet. She holds the space of my aura, which has not shrunk as my body mass has, and because she does this I feel spacious in her company – as if I am dressed in my own clothes, occupying the right amount of airspace. But it also gives me the capacity to feel rattling – as if there are a few inches of air around me and the rest of the world because I am not occupying in flesh the room that is there for me to take.
Does that make any sense? Oh well, I know what I mean…
So anyway, I went home…and it was illuminating. In the perfection of it not being home-ly it was perfect because it was out. And being there allowed me to see what freedom was, and how little it gave me over and above being here. I feel claustrophobic within my own captivity – captivity and restriction has been the way of my life. But this is by no means a negative and I have to stress that enormously strongly. Cloistered is the best word I can imagine: it implies a purist imprisonment of ones own making. My life has been cloistered by its insufficient nutrients, then by its insufficient body mass. Now my lack of mobility and motility is not only in my legs but had also begun to seep into my general attitude. Feeling restricted (as I always, always have done you have to understand) leads to a feeling that one must be or needs to be restricted. And so I have learnt to restrict myself. I am thinking specifically about food – routines/amounts/types – but actually it is far wider than that.
Let me start from the beginning of what I can see…lacking energy causes restriction. Over-eating to rectify this causes further restrictions (in lifestyle/activity/experience). In trying to rectify this restriction I restricted myself still further. I have become so used to being restricted I have little connection to freedom. And today I went and tasted what is supposedly ‘freedom’ and all I could see was how much I was in the right place. Here at the hospital is not restriction; it is the route to freedom. I need to be here because this is freedom’s path. Being ‘free’ right now – out in St Mary’s Close – would not be neither fun nor beneficial but damaging. I would be restricted there by my own incapacities.
And I also saw something else very important. The level of mobility I have now is only there because I can spend time without pain. This is due to heavy-duty medication. I am not well – weight-wise, stamina-wise and mobility-wise I am ill. My striving to be well is only possible because of my medication – and I am privileged enough to still be allowed to take it. That and the food that I am now eating – I am privileged to be in an environment where I am allowed to have it easy for my digestion. It doesn’t mean I want to stay here – eating drinks instead of food, in the hospital or taking medication. It does, however, encourage a more charitable attitude towards the existence within these walls. It is an existence I have never really devalued, but I have never seen it in these terms before. I could not be out of hospital now and be healthy. Here is the safest place for me to be because it holds all of the elements of my freedom within it.
And thinking about freedom, restriction and cloistered-ness will always make me think about my attitude around the food I am eating and the regime I am on. It is difficult to do more than the regime, mentally. My default setting has always been restriction. I have always been meant to hold back because there has never been the capacity to do any more than that. And so…I have no idea what I am saying. I just think I have been so used to being restricted and held back that I am struggling this time around – where everything looks so familiar to Darlington and every other healing attempt I have ever made – to compute the fact that I do not have to count, don’t have to be fearful and meticulous.
Yes…meticulous precision of restriction. I watched myself serve up an afternoon snack today. The orange juice was measured – yet I could have not only fit in another few mls in the glass but also have drunk them. There was a precision to the administering of two tomatoes and a strawberry, a pistachio nut and three grapes…not counted just measured and contained. Contained, measured – everything with a lid on. Restrained. It is not that I am not behaving OK but I am within confines, not on my own page of freedom. And not because I want to be but because I have little or no life experience of having anything other than somebody else’s page to work from. (The diet plan from St George’s is a case in point…being so used to ‘plans’ and ‘routines’ I have no confidence in my ability to go off piste and improvise.)
And I still don’t. I must stress that – I STILL DON’T. But something is very different. What is present now is NOT cloistered-ness, restrictive-ness, and measured. It is, instead, a lack of awareness of how to not be all of the above. Before the potential was never there because there really were genuine restrictions (zinc deficiency, overweight-ness, underweight-ness, infections) and so being cloistered was not only necessary and required but forced. Imprisonment was externally attributed, monitored and upheld. Now, however, whilst the behaviour is the same the limitations are not present and there is the potential for the attitude within me to change now I have realized that the doors are actually open. All it takes is the confidence. I do not have to break down barriers of imprisonment, simply look up and see that they are not chained in the first place and it is merely a case of opening the doors.
I suppose this is the lack of fight to which I have so often alluded and aspired. And it is not that the situation or behaviour looks any different, but my eyes are looking at the barriers instead of squinting and trying to push against them with all my might. And the key, vital thing is the slow build-up of confidence which I am engaged within. This is not miraculous and will not happen overnight – nor does it need to, nor do I want it to. I will not realize how I do not need to count every sweet or millilitre of fluid, every crumb, grape, pea or calorie for a while. It will take me a little while to look up and see that the glass ceiling has been withdrawn. When it has been in place so long you don’t often reach up to check that it’s still intact – more often than not you just assume.
I think I recognise that for the first time my glass ceiling has, like in some ultra-modern architectural feat of engineering, been withdrawn silently allowing me access to the exterior – and also the outside access to me. I do not need to time myself because I have a plan but simply keep responding. Now I see that there are no barriers there can be a gradual creeping upwards – like steam inching its way out of the pot as it heats up its contents. Courage cannot be taught or told, however, simply appreciated and grown as experience demonstrates truth.
So I may go online and investigate what biscuits Tesco and Marks sell…and have more to eat. Not because I’m forced to or, as in Darlington, I am desperate to escape…
…I need to tell you all I don’t want to escape. I am happy here. This is my home at the moment. I don’t like all the people, all the factors that build what it is to be in hospital or the things that make up what experiencing this place actually is. But I am not aspiring out of Worthing hospital as I was out of Darlington (which led to binges, over-consuming Fortisips etc. in desperation). I am healthy this time and so am being forced to do this properly – by discovering for myself the lack of restrictions I now possess and tasting for my own purposes the amount of freedom I have. At the moment it is not a lot – the courage is small, the energy is little, the freedom is there for the taking but the habit of imagining oneself restricted is far stronger than any freedom I can see or sense. Too used to holding back I am only just beginning to see that there is another way. I do not know how long it will take me to begin walking along that pathway of difference. It is the only pathway, the only way to health and there is no other option…there is only speed and timing and length. And that is neither up to me nor able to be seen at this moment in time…
..for now, though. I must stop writing and move on – to reading about the world and settling in for another evening. I don’t have to like it, I don’t feel ‘happy’ but I know that this is what my life both is and needs right now. As such I can live it without being constantly harassed and bothered by the way it takes shape and the way it is…
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