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Thursday, 1 September 2011

The Concentration Factor

Hi all,
I hope that you have all experienced a healthy and happy couple of days.
It really does feel like I am always apologising at present, but I unfortunately I have to do so again, as I was last night in too much pain to compose a post for you all.
If I had been physically able to write a post last night, I can tell you that it would have been quite interesting to say the least, as the added Oramorph, (morphine solutions to those non-dependants out there!), coupled with the slow release morphine that I had taken earlier in the evening, had taken it's usual toll on my concentration and ability to make any kind of comprehensible sense whatsoever!
The concentration factor, is an incredibly underestimated, (and even unknown to some people), element of how a disability can affect someone's life on a day to day basis.
One of my most frustrating conversations with somebody who wanted to know the affects of my disability and the subsequent medication for it, came a mere two years after my accident and a mere year after my invasive spinal surgery.
The friend who made such an innocent enquiry is known to be pretty forthright, outspoken and all too often overly opinionated the wrong side of a bottle of Merlot, (as he was that evening)- yet was a friend; so when one is feeling as delicate and vulnerable as I was so back then, you naively expect your friends to behave in the unrealisticly perfect and understanding manner in which you dream them to be in your head.
Staying with this friend and his pregnant wife and child in their home, the former mentioned naturally retired to bed early of an evening each night of the holiday, leaving me to mange the Merlot induced banter flying left right and centre between my husband and said 'friend'.
After a rally of particularly harsh, yet hilarious blows, the mood suddenly changed, when after a long pause impregnated by a deep gulp of red, our friend, (who is rarely ever serious or banter-free), asked the much dreaded question at the time of, 'just how are you both? I take it now the operation has been and gone things are improving?'.
Taking our own gulps of dutch courage, Garry and preceded to present the now much practised precis of our journey and current situation.
The news wasn't good to tell and we wondered whether our friend truly really wanted to hear it?- or was he just asking those three little words of 'how are you'; like so many do all over the world everyday and unfortunately so rarely truly mean. Do all of those people actually really want to hear and most importantly deal with the answer given to them?
In this instance I actually believe that our friend was interested and willing to hear a true answer and not the false, 'fine thanks, how are you?: the only trouble was, that our friend was a little tipsy, leading the element of his character that all to often believes himself to have the answer to all things and never be wrong seep out with avengance.
On hearing that, how until this trip, (in which I was only able to be out of bed a couple of hours and unable to leave the house much at all), I had been confined to my bed completely and had been unable to fill my time of convalescence with anything other than watching films and television, he returned our honesty with a quizicle look and a look of disbelief!
'Why? Why? Why?', he drunkenly repeated as I felt the knot tighten in my stomach and the draw to the sanctuary of my bed pull me ever closer.
These words struck deeper than they should have ordinarily; as this was what I believed so many of my less forthright and tipsy friends would have felt and said, if they too had had the courage to do so. 'Why would anyone waste over a year and a half of their lives in which they may be confined to bed, watching television alone?
Why indeed? 'Why not read, learn a language, study a distance learning course or write a diary?'-
these were thoughts being expressed in an extremely animated and agitated manner by my friend, whom I almost felt a hostility from- unexpressed thoughts of- I didn't think you were that lazy, brain dead or stupid!
On reading this at his desk  tomorrow morning, I can imagine my husband will shake his head and say that these feelings were probably self-imposed and not at all those acurately being expressed by our friend, but that is truely a hard line to define.
 Garry immediately jumped to my defense at our friend's incredulous expressions, stating that it is all a completely unappreciated element of the situation we were living, thanks to the side effects of the strong medication.
Despite our two man attempt to try and explain this, my friend, an extremely bright man who always needs much stimulation himself, ( I can not tell you quite what is job is or the game will be up for many, in terms of keeping anonymity!), he simply couldn't understand how somebody could waste their time in such a manner.
A lover of reading and writing and even studying, (weirdly), myself- as soon as I was told at the beginning of this journey that I would be in bed for a long time; I began to research language courses, distance learning degrees and a making vast lists of books which I had yet had the time to read. If this time in bed was going to be imposed with no other option than to lay there, then I was going to make the most of it and crucially make it count and certainly not waste it!
Never in my wildest dreams did I envisage the truth- that on top of losing my mobility and my life as an air hostess, dancer, runner and swimmer, I would also lose my cognitive function and ability to read, write, use the phone and have any kind of correspondence by email or letter.
Now I properly felt a prisoner of my circumstances, confined to my bed to either stare at the wall or stare at the tele, it frankly didn't make much difference which, as I couldn't even tell you what the programme or film was about by the time the credits had even finished rolling!
I read the same page of a Harry Potter book, again, and again, and again, for two and a half years until my circumstances changed and allowed me the facility to read and write again.,
Even then, it has been a struggle to retrain myself in these diciplines and battle against my morphine which cruely eats away at my concentration daily.
Writing this daily blog more often than not takes me three to four hours at a time and then the following day I am horrified by the amount of grammatical errors and begin to edit it for yet another hour! Life is a perpetual state of confusion and frustration.
I know had I not lived it, I would struggle to understand how somebody could spend two years out of contact with friends and simply confined to one's bed, stripped of a vast amount of one's mental facility and consequently literally staring at four walls- but the truth is, it happens and happens to more people than you realise.
Lack of concerntration and mental faculty, is a MUCH too underestimated and misunderstood element of many people's physical disability's and of course a factor of many people's mental and behavioral disabilities also; which is why I am writing this to you today, so that you may hopefully forward a link to this post to as many people as you can, in the hope that more people can be aware and more empathetic of this difficult and distressing elements of people's disabilities.
As such a keen writer and lover of literature, it has certainly been one of the most difficult things I have had to deal; like being kicked when you are down- having more and more of my loves being ripped from me again and again.
The positive we can gain from a negative here is learning. Learning that this is actually going on for many people behind closed doors and false smiles and learning how to speak of it - e.g., not in a disparaging manner that gives the impression to the person suffering that... surely must be something they could do if they really tried!
That is the sentiment that I feared, (on reflection perhaps with an element of paranoia), that everyone I knew was thinking this unreasonable judgement.

Let us make my two years in bed count now; let us turn this negative into a positive and spread the message far and wide.

Today's Reason to Smile, is a superficial and personal one I'm afraid: no profound statements or inspirational stories to be found here today unfortunately!
Today, 1st September 2011, sees the arrival of Karen Suzanne Reader's new desk! I LOVE it and it is of huge personal significance to me, in testiment that I have had the patience, determination and good fortune to be able to read and write again!
Happy 1st September everybody, have a great day tomorrow- it's a Friday after all so it can't fail to be fabulous can it!  
Treasure those things you take for granted. Sweet dreams.

Tuesday, 30 August 2011

I'm Back!

Hello again everybody, I hope that you all enjoyed a wonderful Bank Holiday weekend.
I was indeed well enough to travel to my sister-in-law’s idyllic country cottage in Devon as planned and experienced the rest and relaxation that I had so been looking forward to!
My wonderful weekend away was topped off perfectly last night with a little easy, (yet stimulating), listening from Radio 4’s No Triumph No Tragedy series as my husband and I meandered our way home along the dark Devonshire country lanes! I have always adored travelling at night by whatever medium and last night I just loved watching the glow of country cottages pass by the van windows like little glow-worms as I had the privilege, as passenger, of snuggling up and feeling cosy for our two and a half hour journey back to the Big Smoke whilst we listened to the aforementioned radio show.
The guest on Peter White’s programme last night, (which I can highly recommend to all- 9.30pm Sundays), was Shannon Murray, the model and actress who had such a huge breakthrough last year as one of the first disabled models to be used in a major brand’s advertising campaign.
Shannon’s journey from able-bodied to disabled is a story very similar to that of Joni Eareckson Tada, (whom I have featured before on my ‘Reason to Smile’), in the fact that they were both paralysed in their teenage years whilst frolicking carelessly at the beach with friends- both ladies jumped into the sea without the knowledge of the depth or landscape of the rocks below the appealing cool water that lay before them.
On listening to Shannon regale the details of her heart wrenching tale of her transition from carefree teenager, to one reliant upon wheelchairs and the constant care of those around them- I felt strangely nauseous and extremely uneasy and unsettled.
Peter White remarked that this was probably a story that Shannon had no doubt told a million times and she agreed and consequently expressed it with an ease and almost blase nature.
I myself can relate to this attitude and have probably told my own tale around a hundred times now; each time having more and more of a relaxed and detached attitude to the whole affair- so much so that now I sometimes forget when I am recalling the facts and figures of my rehabilitation, that I am actually talking of my journey and not that of someone else!
I did’nt know at first quite what it was that hit me so hard on hearing Shannon’s tale, but I knew that it did and extraordinarily dramatically! There was a point on hearing the story that a feeling, rather than a thought hit me and really made me realise how things must have affected my own family and husband whom I am both extremely close to.
I know that it is a subject that I have spoke of before, but I genuinely believe that my experience has been an easier one for me to live through, than for my parents and husband and those who love me and who have had to watch me struggle with the reality of unbearable pain along with the fact that I will never realise the dreams and goals that I had set for myself.
My Mum has expressed to me so many times that she would have much rather had my injuries and illnesses herself and would do simply anything in the world to herself if it meant that she could take even a little of my pain away.
Clearly it is a natural maternal love here that makes my Mum express such deeply touching wishes: but I believe that there is an element of this desire in all of us, with people who we love so dearly- in contrast to the conflicting feelings of, ‘…there by the grace of God go I ..’, there is a part of us who would do anything to take the pain away from the people we love.
Although I had always understood this in theory, it really wasn’t until I heard the thoughts of somebody with a similar journey to myself, speak so frankly of their own dark and desperate feelings, that it really struck me like a ten tonne truck to the chest quite what this must have been like for my family. As Shannon expressed each example of her depression, I sat there longing not to hear the next detail. I longed to be able to taken her misfortune away from her, (and this is somebody that I have never met before, nor have any feelings of love for), but as with my own experience, Shannon has not let her circumstances stay a misfortune and has instead decided to turn a negative experience and turn it into a positive one.
I know that I can not change what has been bestowed unto me in the form of my disability; but what I can do, is make the most of and embrace the situation that I am stuck with. I hope that in time, my Mum, my Dad, my husband and my other nearest and dearest will come to accept and embrace this also.
I hope that in time we can all learn to accept that which we can not change and have the courage to change the things we can- along with the wisdom to know the difference.
It is the feelings of those that I love that I genuinely worry about more than my own. I only pray that my family can let go of the sadness and what ifs that they so naturally carry around with them and embrace this new stage in all of our lives.
Tragedy, strangely permeates into the lives of the people around you much more than joyous happenings do; so the only way that this can be overcome in my opinion, is to try and move forward together.
I am blessed to have such a wonderful support in the form of such great family and friends, but the point of this post is only reinforced by the fact that every night as part of my prayers, (if you haven’t guessed yet, I have quite a strong faith!), I pray that no harm comes to my family and my desires that if there should be misfortune ahead, that it should be put upon me and not my family!
There you go- at the end of the day I suppose that these feelings are natural and to be expected. We can’t change them so let’s accept the feeling which we can not change and have the courage to challenge the feelings which we can!
Goodnight to you all. It’s great to be back in communication with you again.
The thing that has made me smile today is my family. I am so blessed and I am so grateful.
I pledge to make the most of them and not take them for granted. I hope that you have a great support network too. If you don’t, remember that I am in the process of creating a forum page for this website,but in the meantime there is the wall of the Discover Disability Facebook page.   http://www.facebook.com/#!/profile.php?id=100002588247268
A problem shared is a problem halved and all that: and one shared with someone who can relate and empathise with your experiences is quartered- well that’s what I say and I’m sticking to it!
Night all! X