We have a large gold fan in our living room, it’s on the wall in the living room just above the sideboard. Back when the room had Christmas decorations filling any space large enough to take them and even the odd one or two not, I used to hang strings on the fan and use small gold clothes pegs to attach to them all the Christmas cards that arrived. It wasn’t only on the strings I also pegged them straight to the fan and onto the rods that reached out to the edges. Although the number of cards is now less than a quarter there used to be and there were no decorations in the room, I held to tradition and pinned to the fan each one as they arrived. For the last three days I must have looked at that fan a couple of times every hour, telling myself silently that it was time they were all gone, then I would return to what I was doing, having done nothing about it at all. It has become one of those habits I have developed lately, I look and I think, but I somehow rarely do. There is a mental list as long as my arm of things to do, but the best thing about not writing them down on paper and just making a mental note, is that I simple brush them away, bit by bit, for every second they are there. It is a bit like writing them in sand, either the wind or the sea will finally fill them in, grain by grain of sand taking them away. If like the cards I am reminded I write over it again this time deeper but finally as sand always does, it wins and they are forgotten, job done in a strange MS sort of way. Just before I started writing this I looked at the fan again, but for once I actually got up and did it, I unpegged each card and put them in a pile for Adam to look through, he has a strange habit of holding on to some, so I didn’t throw them away, but at last Christmas has finally gone!
Once more I am having problems with the mattress elevator, it seems to be lifting Adams side of the bed faster and higher than mine, as though it is somehow twisted. I actually made appoint of talking to Adam last night about it as I had investigated to find that all the strapping that hold it in place seem to have suddenly let go, each strap is around six inches from where the buckle should be holding it. We have a plan that at the weekend when we clean sheet the bed that both of us will spend some time together tightening up and repositioning it so it has a chance of doing it’s job as it should. I can’t help feeling that if were alone, I would be calling out the company responsible for it several times a year as although I looked at it yesterday, that was all I could do, I just didn’t have the strength required to tighten them all or to hold the mattress out of they way. There really must be a better way of doing this, an engineering plan for someone with a brain for it, as the present design isn’t fit for purpose, like so many of the so called disability aids.
It’s strange but I still remember how hard I fought not to use that word or have it applied to me, disabled. I use to think it was horrid, something that once pinned to you there was no escape from, but now I really don’t mind any more than I mind all the other medical terms that apply to any of my conditions. I remember having an argument with a woman on Twitter, one that several other tweeters came to my defence and confirmed that what I said was correct, I can’t remember the exact tweet, but I remember the word causing the uproar, ‘Spasticity’. I had used it instead of spasm, as they actually mean the same thing, ‘the excessive contraction of the muscles’. I am not stupid, I knew exactly what she was thinking of and even when explained to her what it really meant, she still insisted that it was a word that shouldn’t be used. I guess we all have labels and words that we don’t like, simply because they paint a certain picture in our own minds, ones that we would rather not have, then on top of that comes the ‘politically correct’ things to say. I fought against being disabled as I saw the word belonging to a group of people who in my mind, I couldn’t possibly ever have anything in common with, yes I was in denial, but when I fully admit it, it went a lot deeper. The people I had in my head had nothing in common with me, I didn’t look like them, I didn’t dress like them or talk like them. They were people not able to be out on their own, who required to be pushed in a wheelchair as their heads sat to the side and they stared into nothing, only their carer could understand the noises they made to be actually words and their motions were jilted and uncoordinated from life. My vision, like so many other peoples was based on lack of knowledge and a huge lack of understanding. My personal ignorance is actually a large part of why I write, I want to break that image, to show that disability doesn’t actually mean brain dead or brainless, it can mean a million things, what ever those things are, behind all of them is still a person. Add what ever label, what ever name or what ever description you like to me, I am probably all of them, but remember I am still a person with a personality, intelligence, humour, knowledge, feelings and life.
Stereo types will always happen, there is no way round them, humans will also take the easy route of ignoring and dismissing what ever they are not at ease with. Changing that is a bigger challenge then finding a cure for the conditions that put people like me in a pigeon hole. Short of every single person on this planet joining me in the disabled world, we will never change anything, unless we all gently chip away at that image and keep chipping. Taking a sledgehammer just wouldn’t work, force never changes it just normally makes things worse, so I will keep up my daily chipping because I am actually quite proud to say I am disabled. I now know that to be disabled takes a special kind of strength, ingenuity and self belief to live every second of every day.
Thank you so much for your blog. In todays I so identified with you of the looking @ things and making mental notes of what needs to be done – but somedays it’s just not in me, but when eventually done, it feels so good. But in the mean time I don’t sweat the small stuff anymore. There are so many other things that fill my days- like just getting dressed on some of them. I love your words about being proud to be disabled. I too have come to that point in my life, where I am just grateful to be here(on most days) and there are so many more important things that truely matter more than any label placed upon being disabled. Thanks for sharing everyday!
I am amazed at the strength of folks such as yourself and my father’s brother (who also has MS). It does take a special strength, and I take a lot of inspiration from your comments here. Keep up the good fight Pamela, and thank you for being so open about your challenges.
I know what you mean about a list as long as your arm I have loads of things I must get round to doing but I have taken a page out of your book and yesterday and today I have cleaned out my drawers in the kitchen one of those drawers we throw everything in then today I have sorted through a few of the boxes I have been living with since our last move I know I am gonna be exhausted tonight but I have an amazing sense of achievement glowing round me at the moment 🙂 hope you manage to fix the mattress over the weekend 🙂