What makes me disabled?

I thought yesterday would be the day where I started to make headway with my plans, it turned out the total opposite. The only positive thing I managed all day was to dye my hair. It is now a glorious glowing purple again and so curly I am beginning to really wonder what has happened to my hair follicles. I wrote a post a couple of years ago called “Crystal Tips and Alasdair”, a title that some of you might recognise from your childhood. I had suddenly discovered that my once completely straight hair was wavy and even edging on curly, two years on, and it is quite defiantly becoming more and more curly with each year. In my post, I had come up with a theory about hair possible turned curly with age. Well, you rarely see young women with curly hair, yet every second little grey, no, sorry I should say “little blue rinsed granny” has curls. It may just be me, but those big gentle waves from two years ago are getting tighter and tighter. Rather a bummer actually as I had this mad goal of getting all my hair well down past my hips, rather than just those extra long strands getting caught when I sit down, it would all be. If it going to keep getting more and more curly, well I’ll never get to that goal. I have to say that I’m not moaning in any way, it does look rather good.

I may have successfully managed to put the dye actually in my hair rather than all over both the kitchen and bathroom, but it was at the same time the messiest hair dying session so far. It really is getting harder and harder to achieve precision, I know Adam would be perfectly happy to help me, but each time he has tried he just hasn’t been able to get the speed element at all. Most dyes should be in contact with your hair for more than 30 minutes, but it requires 20 to turn the untreated hair to the desired colour. Therefore, you actually don’t have much more than 10 minutes to apply it all, even with a home dye that allows a bigger window of error. He just doesn’t seem able to do it any faster than ten minutes per strand. My hair would be totally fired beyond repair if he was the person who always applied it. I used to be totally obsessive about not having roots that showed, it was a pet hate of mine, especially as time passed and my number of grey hairs just kept growing. Being housebound seemed to break that one into tiny pieces. I don’t think I died it at all for the first 3 years. Since then, if it gets done twice a year, well it’s doing well. There is something about not being seen by outsiders that have changed my behaviour, which I don’t really get. I was the kind of person who even if I wasn’t going out that day, I still applied a fine layer of makeup, mascara and eyeliner, these days I do none. It is oddly liberating, but I know who’s fault that past behaviour was, it was my mothers. She used to say, you never know when the doorbell will ring, she was right, but does it really matter? Maybe not, but I still don’t want my hair fried. It is another one of those things that I need to work on sorting out before I suddenly find myself totally unable to do, I need to find a hairdresser who will come to my home.

There is something so important about holding onto all those tiny strands of independence. I even found myself when I started looking at containers for me to transport liquids in during the day when Adam wasn’t here to help, that I could fill myself. It took time for me to realise this, but I am glad that I did. I know without a doubt if I bought 6 or so small bottles, that Adam would happily fill them and they could just sit in the fridge to be used and refilled by him when he was next in the kitchen. Independence means I want to be able to go to the kitchen, where I haven’t even checked yet is, if I can get the bottle out of the fridge door or not? Then I want to fill up whatever the container is by myself from a 2lt bottle, on a counter which might be too high to reach with ease from a wheelchair, put the bottle away again, fix the top onto the container so it doesn’t spill on the way back here, so I can then pour into my glass. Independence stinks, as it pushes you into doing things that are clearly complicated and difficult without thought. It stops you from being logical in any way what so ever, how on earth am I going to manage that without spilling stuff all over the place. Working all that out showed me that my trip around the house the other day didn’t even scratch the surface. I need to repeat it and actually perform every task I can think of that I do daily, not just say well I can do it if…, but actually do it and note where it goes wrong and how to fix it. Then I can sit and look at what independence is possible and where I will just have to swallow my pride and accept it has to be done another way.

You wouldn’t think that doing something so mundane as fetching a drink, can actually be important to do ourselves. If you think about it, though, fetching a drink ourselves is probably one of the very first so-called grown up things we ever get to do ourselves as children. I can still remember the pride on Teressa’s face the first time I allowed her to not only fetch a drink for her but also for her brother. She got to do that long before anything else and it clearly made her feel grown up and independent, disability slow strips them all away, one by one. I used to wonder where the point was that you ceased to be able-bodied, as I have never seen a definition of what able-bodied is. I’ve seen loads as to what disabled is, but able, never. Everyone assumes they know, it’s one of those things that I know without doubt if you stopped people in the street and asked them, most would look at you blank and start to umm and aah, some might actually answer “that’s a good question”. I wouldn’t be able to give a succinct answer and I’m the one asking the question. Even when I searched it on Google many of the dictionary explanations could also be applied to many people who are disabled, especially those who are Olympians. Able-bodied and disabled clearly aren’t definable, yet we all put such importance on them both, when we don’t even truly know which is which. Does the quality of what I write show that I am disabled, if I were sat on a normal seat beside when you asked that question in the street, would they all point at me and say “She is not able-bodied, in fact, she’s disabled”. I doubt it. Yet, so much of society sees me that way. To me, the biggest disability I have, is the loss of my independence, not the physical and mental problems I live with.

Clearly I need to get the wheelchair out of the cupboard again for another test drive. This time it has to be done with a different question, not the physical layout of our home, but the activities within it and how to preserve as much of my independence as possible. It is all too easy to say “well Adam can do this or that to help”, I am sure Adam can and would without a grumble, but why should he do anything when I can. The importance of my independence isn’t the only issue here, there is also the issue of Adam independence and his right to a life as well. The time will arrive soon enough that his life will be taken over by mine, but it doesn’t need to happen sooner than necessary.

Please read my post from 2 years ago – 30/08/2015 – PC, what PC?

I am getting so far ahead of myself, telling myself every few minutes that that is it I have everything back in place, a few minutes later I find once more I’m not. At this minute my beloved PC is only partially working as it should, there is still so much more to do and I just want it done. The last few days have been total hell, I really am not……

1 thought on “What makes me disabled?

  1. U got farther than me today. After a month I finally washed my hair so I can attempt to correct it tomorrow. It look like I have a skunk tail going down the top of my head. I too was the person that had to be all put together even if I was going to Walmart. Now I wear my hair in a ponytail 90% of the time becuse I can no longer hold the curling iron above my head. The only thing I really do for me is get a pedicure and acrylic on my nails. That hasnt been done in 4 months. They r all short & look awful but I’ve been in to much pain to get ready to go out. I’ll never find a good man looking the way I do. Thanks for sharing hon. It helps to hear someone else understands that we are not lazy but our limited by our pain & bodies. Sending gentle hugs. I

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