Looking towards Christmas

I realised over the weekend that Christmas is again crashing towards us are full speed. I used to love Christmas so much as I love all the decorating and giving or presents, everyone always told me I went OTT but I gained huge pleasure in doing so. My home would be decorated beyond most, with three Christmas trees, one in the living room, one in the hall and the third in the kitchen, all decorated in a traditional style. All our mirrors took on the look of flattened trees, with drapes of beads, tinsel and artificial greenery and flowers. I have boxes and boxes of decoration including I know over 400 baubles, and over 500 lights for the main tree alone, of which not one came out last year, as I expect the same will be true this year.

It was me that always did all the work and the designing of each years display, the one year that Adam did the work on his own I was simply frustrated watching what he was doing and found myself moving things when he wasn’t there. Stretching to reach the top of a 12 foot tree, is another thing that I really don’t need, as I know 100% that I would not be able to just leave it alone. It has been suggested that it could be scaled down, but that to me would be worse than not doing it at all, I am just one of those people who have to have things done properly or just don’t do it at all. On top of that I don’t think is fair to be putting on to Adam, what used to take me 3 days full of work to just get it all done, and another full day to wrap and decorate the presents. It may appear to be just a small thing not being able to have the Christmas I always loved, but it is another thing that is now ticked off as gone due to MS.

There are so many what may seem like small things that illness changes and or takes away, my life now and my life 7 yrs ago have little to no similarities, you don’t really notice most of them as they are so slow in happening but drip by drip, bit by bit everything changes. I think if I wrote up the lists of things done for practical life reasons and things done for enjoyment for each time period it would be hard to see that they were the lists of the same person. When change happens slowly it is in many ways easier to deal with as you don’t see it happening, Christmas is different as it is a marked point in the year by everyone and difficult to ignore. I have spent Christmas too many times on my own and those Christmas’s were the ones when my home showed little sign of the festivities of the year, so my over the top Christmas was far more than just the time of year, it was also a celebration of having others in my life to share it with. I accept life changes but it is one of those occasions that has so much more behind it than just what others might see on the surface.

Being stuck here inside myself has actually taught me that the surface things of life are not as important as we think, what is important and often missed is what is inside. I have learned that I have to be what I am at that time, rather than what I would choose to be, and well the outside of me and my surroundings aren’t as important as I once thought them to be. Life hasn’t ended because I can’t go outdoors, nor will it end because I can’t be picky and fussy about one day in the year. Last year there were no decorations and the day came and went and I still loved it, but in a different way and this year will be the same. The important things of a good Christmas are simple, sharing the day with the person I love and taking the time to make it special for both of us.

Disabled Different?

John went back to the US last night, I think it was a very long day for all of us as we all felt helpless. Teressa is devastated, something that is clear by her pleas to her friends across the world on Facebook. Due to her traveling life she has gained a strength and ability to cope, with long distance friendships which right now I am glad off. I normally just read her Facebook as I see it as a link but one that in normal times she doesn’t need her mother getting involved in, but I felt a need to add to it for the first time yesterday and did and again this morning. Some of you will have noted the unusual spelling of her first name, not the spelling that I gave her but one that appeared in her late teens and has remained and I respected as it is her choice. Today she appealed to her friends as she has already had problems with the difference between her official documents and some bills and letters, I couldn’t resist…. ‘As the person who gave you the name I think you should go back to the original not Teressa, but “TERESA_JANE”!’ I know she doesn’t like the double barrel first name so I couldn’t resist it, knowing it would make her blush with everyone else now knowing, I did go on to give advice and add that it could have been worse I could have told the world her middle names as well. She knows my sense of humor well and I just wanted to lighten her mood for a minute. It will now be months until the two of them can be together and my heart goes out to John as in someways he is in the worse position, no job, no home and no Teressa, she at lease has the other two already and starts work on Monday so it will help to keep her busy.

On my other blog today I posted a very short piece simply called ‘Different?’, it is part of my ‘Dazzle’ posts but as I was writing my brain was running thorough instances in my life were my own experience and feelings linked, unfortunately there are too many for my to put into any single post but two made me want to add them in here as they may well have meaning to you. I have always in my teenage years and since I left my first husband preferred a more dramatic and individual style, in the late 80’s I started having tattoos done,this was long before the ‘Beckham era’ so not done, especially by women. All my tattoos to this day are easy to hide should I wish to but they are extensive, both arms from the elbow up, my full back, shoulders and two panels at the front and a few on my legs, I hadn’t actually completed them when my MS stepped in and change the nerve sensations increasing hugely the pain, I couldn’t predict if I would manage to have 2hrs or just 2mins of work done. I was and ma proud of them and went out most of the time with them on display, my hair has varied in length and style but again dramatic in all my choices, of colour and accessories, all combined by strong dramatic make-up, 53 earrings in one ear and a nose piercing. Being tall for a Scot at 5ft 9ins and dressed in black in clothes I never saw anyone else wear I was, when I walked down the street I was to say the least obvious, and the reactions varied wildly.

What got to me slightly was the change I saw in the winter when I went out covered-up to the summer. Winter yes there were reactions some stared a bit, others smiled, but in the Summer it was nuts. If all my tats as far as possible were on show and I added high heels people got out of my way, the path in front of me widened, as they physically moved as far away as the pavement would allow, many looking at me with a touch of fear. I never asked what was wrong with them and it is only my guess but I felt as though they thought that any second I might draw a knife and attack them. Why? I can only think of the way the media portrayed anyone with tattoos as a monster, who would kill you as soon as look at you. I can also still remember the change in people when I spoke and they discover that I have what most call and educated Scot accent, I went to private school and had elocution lessons so I sound a bit posh if you like to call it that.

By the time my illness took over and change my physical movement I was aware again a of a change, at first the assumption I was drunk and the disgusted looks I received. When I gave in to the walking stick I was treated probably in the most normal way regardless of my other appearance that I have ever had, but then came the wheelchair and with it pity, at that point I was working in an office so Monday to Friday pity followed me around, at the weekend I dressed as me and suddenly I got respect, genuine help and assistance and for once as a human being.

I have put a lot of thought into why? What causes all those reactions to just one person and all I can come up with is social acceptance of difference. I am the same person but I have a much wider view of what the world sees and how they react. Being disabled and sat in a wheelchair in a normal long black coat is an accepted look but the chair made me into a person who received pity and I hated. Anyone out there that uses a chair will have seen it and it hurts, you are a person who is sat down, a person with the same feelings and abilities as anyone else, just not able to walk. Put me in the same chair with outrageous clothes and tattoos showing to the world and I am courageous, strong and to be admired and helped with a smile. Believe me you don’t have to hear the words from your helper the whole of their feeling show on their face.

I have taken for most of my adult life the looks, the perceptions, the feelings that fall on me and passed all of them off with my head held high, but it doesn’t mean that inside there isn’t pain, there isn’t hurt and there isn’t disbelief that simply your appearance is enough for the world to judge. I am not going to change the world and neither are you but if you are reading this and you too have an illness that makes you different, well my advice is if you have ever had a hankering to wear thigh boots, mini skirt and mad make-up, do it now, it works, it works to your advantage when you least want pity and false help.