The hardest thing to lose

I often wonder what it is that brings people back to my blog over and over. To me, I am just another person, one among millions around this world who are living with a range of illnesses and housebound. I am sure that each and every one of them could if they chose, write exactly the words I do, yet here you are reading mine. No matter how I try, I, personally don’t get it, but I wouldn’t would I. I don’t think any of us truly understand how others see us, but for me it goes even deeper. I don’t understand what anyone sees in almost everything, especially the so-called popular. Just as I love to burry my mind in yet another documentary about the “Somme”, even a repeat, rather than a soap opera, I never understand what draws more than one person to anything. When almost everyone out there says that the “Beetles” were an amazing band, I don’t hear it, above average, to me is even stretching it, worth listening to, never, and it’s a pattern that has shaped my whole life. It’s not just music, it’s everything. 95% if not more of what is popular, I just can’t get my head around. It can be anything, fashion, food, music or anything that you can think of, my taste just doesn’t agree with the rest of the world. My parents used to think I did it just to be difficult, but I never have and I never would. How many kids do you know who hate both jelly and ice cream? I wanted to be sick at the very thought of them and still do. I have grown to believe that I was born different, that is the only explanation that I have ever been able to come up with, but that’s not an answer.

Once I had my freedom, when I was finally allowed to be myself, I took it to the fullest expressions of it that I could. It’s hard to explain just how wonderful it feels to suddenly find yourself aged 27 and not having a single person telling you what to wear, how to look, what you can eat, or do, or even think. When I left my first husband and I had my freedom, with nothing to prove, I thought that my entire life would be just like that, free. That there was never going to be the slightest chance that anything would limit me ever again. I didn’t care if people stared at me, thought I was mad or even called me names. I was me and I was going to be exactly that. To me they were the odd ones, they were the ones who were willing to be dictated to by society as to how they were going to live and look. I felt sorry for them, not being able to see the possibilities, the invigorating freedom in totally creating yours and you alone, was the only person who had to like it. I couldn’t believe how so few could even see past it, or were even willing to try and look past it. What did they think they would find? I wasn’t that different from them, inside we are all identical, it’s only our thoughts and our self-education that creates any differences at all. How different can two people really be when they have been brought up in the same society, the same country, having passed through the same education system and been open to the same influences, like them or not.

In the early 1990’s, I proudly showed my tattoos, which kept growing and spreading, but that alone without my jet black and scarlet streaked hair, was enough to have people move out of my way. What was I going to do, infect them, or stab them, I was a woman in my late 20’s politely spoken and educated, but all they saw was my outer image. It’s an image most wouldn’t be given a second look now, but then it was totally different. For me it wasn’t about shock, it was about creativity, design, personality and that big word freedom. I appeared to live the wild life, but the truth was the opposite, I had a job, a good job, a nice flat and I was proud of it all. When I chose to retire as a DJ and to join he business world when I reached into my 30’s, a simple white shirt and a suit covered the ink work and I toned my then black and violet hair down to it’s natural dirty blond. No one ran away, no one gave me odd looks or once shouted abuse, and all because of a suit. This world is so wrong, so bigoted and so cruel, yet outside of the office, I was still me, in it I was a sales women and I was going somewhere. I just didn’t realise that all to soon that somewhere would be on wheels.

I had this image of myself in my head, well into my 60’s still turning heads with looks of anything from shock, to laughter, to disgust, sometimes disbelief and just occasionally admiration. I had every intention of living eccentrically right through whatever time my health was willing to give me. What I hadn’t realised was that there is one thing you can’t avoid when your health disintegrates and that is convention. When your nervous system is so screwed up, that that long planned and half completed full tattoo back piece, just can’t be finished. To go from lying there letting them work both lines and colouring for hour after hour to not being able to deal with just five minutes, destroys every plan you make. I spent hours drawing and designing what was to go from the base of my neck to the back of my knees. None of it was completed, most of it down to my waist is there, but there was still more work to be done. Like so much it is incomplete.

I was under no illusion that I would still be wearing short shorts and thigh boots in my 60’s, no I had already been recreating myself for that far in the future. I had this plan of a stylised Victorian, complete with corsetry, but not heavy thick materials, more chiffons and laces, layered and soft. For winter, I saw high collars, mutton sleeves and thousands of velvet covered buttons all of it with a twist that would have made it look like nothing a Victorian would even recognise. I never allowed for the fact that the last outfit I would ever make was my wedding dress, and even then as I worked on it, I often struggled with the beading and embroidery, at the time I just didn’t know why. My work was fine and done with love, hundreds of hours for just one day. That though was nothing new, I had done so for many outfits, most not worn again, but unpicked and turned into something else.

So there I was in my early 40’s sat in my wheelchair, dressed in black knitted mini dresses and thigh boots summer or winter, my hair an acceptable shade of purple and enough jewelry to sink a ship, and that was just in one ear. I was me, I was the person I was born to be illness or not and I knew how to express it without fear. The business world had accepted they couldn’t reduce me and I showed them a little respect in return. I didn’t see that those where my final years, that all I had created was about to be destroyed as somehow my health stole me. I didn’t even see it happening, it just did and I lost everything in a flash.

It’s hard to explain how my health took all that I cherished, how it reduced that carefully crafted person and equally crafted future, to a mere shadow, if not less. At first, it didn’t, at first when I was trapped at home I still maintained me. I wore wonderful black nightdresses, a mix of vintage and new, but all with that twist from normality that meant none would place them as average. They became too hard to wear, to uncomfortable and even difficult to put on. Laces and buttons defeated me and comfort became vital, design slow grew less and less. The weight started to appear where I least wanted it, that once size 8 to 10 figure ballooned and all I wanted was to hide it. I stopped caring about anything else, it just had to be hidden. I can’t use nice words like draped or layer, as the truth is it is just baggy too big, soft and comfortable. Style doesn’t exist anywhere on me at all. My hair may be shocking ultra violet purple, but there are no braids, no beads, no lace or ribbons, it’s just long and there. The silhouette that I once prized is nothing but a series of lumps, each blending into the next. I am too tired, in too much pain and can no longer be bothered to even try to fix it, I don’t have the strength to spare on something so ephemeral as appearance.

I no longer care about food being tasty or special. Those once longed for flavours of the exotic and rare has turned into what’s needed to keep living. Likes and dislikes, well they can’t be changed or be fought, as always I still would rather not eat anything than eat what I don’t like. That though is going to be a growing problem, as the less I care about eating, the more others will try to make me eat. I know right now, if you showed me, for example, a standard hospital menu, I wouldn’t find a single thing that I would consider edible. Many restaurant menus, even from a good restaurant has the same issues. My taste in food is as unusual as my once appearance. Take a simple steak, I like mine blue, with mushrooms and french mustard, but I still rather have a lightly sauteed calf’s liver and onions, than any steak at all. I don’t understand how people eat things like sausages and mince, or fish fingers, baked beans, pies and most other foods that fill British supermarkets, what happened to food, good food. Now a plate of sashimi or sushi that I would enjoy. I can’t get out there to go to places where I could buy what I call “real food”, even if I could, well I can’t prepare it. With every progression of my health, my enjoyment or interests of food diminishes and I can see the battles ahead growing.

When you’re different, when you’re out of step with the world, as long as you are fit and healthy, as long as you can do it all, life is a joy. If I were to say what I miss and what the hardest thing about being chronically ill and housebound, it’s losing me and being totally unable to do a single thing about it. Being me was creative, being me was individual and strong, all things I am no longer, yet you all still keep coming back to read what I have to say.

Please read my blog from 2 years ago today – 28/09/2013 – A missing clue in time 

Things are wrong just now, I can’t really put this into words easily, I have been trying, trying to formalise it clearly so that I can at least explain it to Adam, but the more I try the more it remains a muddle of what I don’t know. Things are just wrong, very wrong. I can sit here on the side….