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Friday, 16 September 2011

Reason to Smile- Flippin' Mental!

Evening folks, I hope that you have had a good day.

Well, for me, as anicipated after my recent exploits against medical advice, it has been a pretty rubbish day in terms of my pain- the hideous, unrelenting enemy of mine, which I'm afraid to say has utterly consumed me and rendered me unable to do anything at all today.

As such, I shall keep my message to you short and sweet this evening and simply supply you with a link to a little video which has made me smile.

You may have seen this before, but it is always a winner of a film in my eyes.

Here is today's reason to smile- The World's First Double Backflip on a Wheelchair


... perfomed by

Thursday, 15 September 2011

A Big Splash!

I'm so sorry to you all for my lack of post yesterday. In contrast to my usual vague- though I assure you always sincere apology; the reason that I was unable to write to you yesterday, was that the day turned out to be a hugely physically significant and consequently painful one for me; thus rendering me imprisoned to my bed and in a morphine induced comer before the sun had even set!
The 15th September 2011 turned out to be a momentous day- the day that I returned to any form of physical form of therapy, since it was enforced upon me to cease such actions nine months ago.
Following my preliminary diagnosis of Arachnoiditis, ( a degenerative neurological disorder which causes chronic pain throughout the nervous system), in January of this year- all of my physical therapy was stopped by my neurology consultant, who enlightened me as to why I always ending up being confined to my bed in incomprehensible chronic pain after every attempt of mine to push myself through the pain and knuckle down with my physiotherapy. The boring science bit of why this happens, is that the Arachnoid membrane which encircles the spinal cord, inflames following any movement, thus resulting in my utterly debilitating neurological pain throughout my back, legs and sometimes arms taking hold of me at even walking a few steps on my sticks around my flat or simply moving position in bed.
As always, I haven't stuck to the rules and the professionally trained dancer and athlete in me, always pushes myself, however much anyone (however well informed), may tell me to do otherwise.
Yesterday, fueled by adrenaline and anxiety, I turned up to my local leisure centre to use the pool, to move around, to do a few of my old hydrotherapy exercises and to generally enjoy the immense freedom that being in water brings to someone with a disability like myself.
Despite the anticipated access hiccups in actually getting through the leisure centre and into the pool, a couple of the staff's kindness and enthusiasm made up for the ineptitude of others and eventually I made it through to the pool area, relatively physically and emotionally unscathed!
As the young, (yet unfortunately not Baywatch 'fit'!), lifeguard, wound the antiquated hoist system to lower me into the pool, on a broken plastic chair; the excitement in me bubbled to the brim in my chest and outweighed any discomfort that I may have felt from the chill of the water or the pinching cracks in the plastic chair, as it gradually submerged me into the chilly depths below.
Clinging onto the edge of the pool like a timid child, I was greeted by the indignant looks of those who I kindly asked to move aside so that I may travel along the side of the pool by holding onto the edge. The frowns and quizzical looks that greeted me were perhaps unsurprising, as to those who didn't see the pantomime that was the lifeguards getting me into the water, (which I imagine considering the palaver that it involved- the number was few, if any!)- I was simply a grown woman, strangely asking people to move out of the way so that I may get past. Without a neon sign upon my head reading, 'DISABLED', or without the unspoken statement that is my wheelchair- I suppose that stripped bare from these indicators, it is understandable that these people wouldn't presume to think that I was disabled,
Finally in position in an appropriate depth for my therapy, I proceeded to work through the lighter set of exercises that I was given by my wonderful hydrotherapy team at Bath hospital.
After working through these movements, I fought the urge to swim, ( for me an odd style, which consists of a bizarre form of breathe stroke with my head kept straight in the water as much as possible to keep my spine in a straight line, whilst relying predominantly on my arms and not my legs to move awkwardly through the water).
Those of you who know me and who have got to know me over the last few months that I have laid my soul bare upon the pages of this blog, will probably know what is coming next- I did  it. I tentatively let go of the side and picked my way through the sea of sugar-hyped school children and swam- albeit an extremely loosely used term in this instance I assure you!
Well, if you guessed what happened there; I imagine that you can also guess what came after the swim! Just about making it home before I got to the point of screaming to the whole of SW London about the pain that I was in, I fell onto my bed and began to wonder whether I'd done the right thing in defying the experts advice.
Twenty four hours on and I'm still wondering.
The pain has now escalated and I have been  incapable of doing much at all today and whether that subsides by tomorrow is anyone's guess right now; but I did it and for somebody who has to set and achieve goals in order to feel worthwhile to myself-that is just so amazingly important.
Why do I need to set such goals- because that is how I have always been. That is the me pre-accident/disability, and that is an extremely hard character trait to stamp out! Trust me, I've had five years of trying to do so!
Well, for today getting in the water after nine or ten months of not being able to do so, is the thing that is making me smile, even though it may be the thing that tomorrow is the thing that will make me cry- that is the nature of the beast of the disability that I live with.
I hope that your disability is playing ball and not hindering your life too much today. Stay strong and cling on to those moments such as being in the water to keep you going.
Until tomorrow- I promise!

Tuesday, 13 September 2011

Reason to Smile 13th Sept '11- Fails & Failures

I hope that you have had a wonderful, if a little windy day today.

My most sincere apologies for not writing to you yesterday. Unfortunately I had to take some Oramorph , (liquid morphine for those of you who aren't addicts to the stuff like I!), as I had some hideous pain: I lay my head down on the pillow for just a moment, only to find that the next thing I knew it is 9.40am!
Although I'm very sorry for not having been in touch, I am extremely reluctant to complain about this, as it is such a rare phenomenon in my life to have had uninterrupted sleep at a normal person's hour for doing so!
The elation at this was unfortunately short lived, as it was soon apparent that the bas*##*d that is my unrelenting pain, that I thought that I may have escaped from, was still there! I could get angry about this, or I could be thankful for the rare blessing of sleep and today I choose the latter!

What I had planned to show you yesterday was a light hearted look at how ridiculous some examples of poor access are. Some of these photographs of such, really do beggar belief that they actually got all the way to the physical act of writing the sign on the pavement, without somebody saying- 'Umm, does anyone else think that this doesn't make an awful lot of sense?'!
Although surprised at witnessing examples of incompetent planning and enforcement of access when I first became disabled, I have now come to the point that I turn up to bars, restaurants and shops expecting there to be poor or often no way for me to enter the building- surely this isn't right?
Please join me in laughing at the ridiculous, unbelievable examples of people in position's of responsibility's ineptitude- but after the gasps and giggles subside, please spare a thought that those of us in wheelchairs, on sticks, who are deaf, blind or otherwise, have to contend with day in, day out.
This Friday I am due to attend my friend's birthday, at a very well known Central London club that is attended by socialites and royals alike- the problem is I've been told after my, I should check they have access, phone call, without even a sorry, (and believe it or not, that is reasonably common!), that I can not get in, so can not attend.
Knowing the image of the club, the sceptic in me wonders whether they do not pursue the small task of getting even a removable ramp for the two steps to the front door, because of their fears that somebody disabled will not fit their image.
Now I appreciate that my words here may simply be fuelled with upset and disappointment and this may not be the case, but if so, why no removable ramp which costs around £200?- Which is about the money this establishment makes from a round of drinks!
Rant over- and breathe!
Have a lovely accessible evening everyone.
If you feel enraged by the injustice of lack of access in your life; don't get mad- do something about it and email me your examples- names, addresses of the offender and ideally photographs, so that en masse we may be able to achieve, what alone we unfortunately have little chance of.
Until tomorrow everyone...  http://failblog.org/?s=wheelchair

Sunday, 11 September 2011

Never Forgetting Those Lost, Left Behind or Living With Scars

Like many of us in this country and the USA and beyond; my husband and I have spent this Sunday 11th September 2011, reflecting on the past, observing silences that honour the fallen and shedding tears for all of those innocent victims of the world's worst single atrocity in my living memory.
As my husband and I sat clenching one another’s hands in a tight, unspoken expression of, 'I love you so dearly and I am so thankful to have you by my side today and everyday', we listened to the seemingly never ending list of names of the murdered, read out by the loved ones who they left behind.
Neither us, nor I imagine they, could quite believe that ten difficult years had passed and I have no doubt whatsoever that those old enough to have recollection of that day, could remember exactly where they were and what they were doing at 8.46am (NAEST), when the first plane hit The World Trade Centre and the world as we knew it changed forever for us all.
Although my husband as a member of the RAF, served and lost colleagues, in the wars that followed the dreadful events of that late summer's day in 2011; I feel extremely fortunate to have not had any direct connection to this tragic day and I pray for all of those who so sadly did.
I hope that if we weren't aware of the number of people who died in Pennsylvania, Washington and New York that day before- then we certainly are after today, the 10th anniversary of the terror attacks.
The number of people who died on that dreadful day, was estimated to be 2986 and there are also claims that there has been one death since, as a result of lung cancer contracted from the toxic dust that was inhaled by so many.
We can not fail to forget the loved ones of those who were killed that day- many of whom had to suffer the unthinkable and listen to the last frantic pleas of help from those whom they treasured so dearly.
We must also ensure that we lest forget, those who fortunately escaped so narrowly with their lives and have to wake up each day with the distressing memories of that day and try their best to carry on- a challenge which at times must just feel so impossible.
Today I have thought about and prayed for, the lives and the souls of all of those people who did nothing wrong but innocently go to work, (or indeed wave their loved ones off to work), that fateful sunny day in September 2011: but of course being the writer of a blog about those living with disabilities, I believe that it would be wrong of me not to focus a little on the lives of those who were made disabled that day and who have had to live with those consequences, on top of having to live with the emotional scars that witnessing such utterly incomprehensible horror must have brought.
Out of respect and research, I have been 'Googling' for stories or data pertaining to the number of people whom are having to live with physical difficulties on top of the understandable emotional trauma acquired from that day.
I may perhaps be a rubbish 'Googler', but I found it extremely difficult to find any details of survivor’s physical situations on my search.
I have wondered whether this is perhaps because with an event of the magnitude of horror of 9/11, the physical difficulties may perhaps take second place to the grief and trauma brought about from witnessing such utter hell on Earth and as such are not spoken about so openly.
This makes sense to me; although only leads me to wonder of the even bigger picture. Living with a disability is hard enough and has such difficult challenges when you do not have to contend with the scars of living through a terror attack.
 Those of you reading this who are disabled, will perhaps be wondering with me just how unimaginably difficult these peoples lives must be with having to cope with such emotional scars, on top of the difficulties of simply physically getting through each day with a disability and the trauma and understandable frustrations that come with this alone.
Finally this evening, my search was fruitful and I found a story of courage to rival any that I have found so far!
The tale is of one Lauren Mannings, the then 37 year old director of global market data, at the now infamous Cantor Fitzgerald financial services firm; who escaped with her life on 9/11, only to be left with 80 per cent burns.
Lauren teetered on the brink of death for weeks following September 11th and on finally becoming concious, the emotional impact of that day naturally took its' toll upon her: but of the physical cost to her life; Lauren speaks of the frustrations of being unable to do the simplest of things, such as walk her mere 29 pound terrier, cook a meal, (the smallest nick in her delicately healed skin risks infection), or even apply glitter to the paper snowflakes for her son’s first-grade class.
“Through the grace of the people in my life, I am able to conduct what appears at first glance in many ways more normal than it is beneath the surface,”, says Laura Mannings. “My husband, he’s been my hands.”
Lauren's story has been told in the book “Love, Greg & Lauren”, which follows the three months after the terrorist attacks, as seen from her bedside by her husband Greg.
Greg Manning sent daily e-mails to the couple's loved ones, describing his efforts to connect with his comatose wife through music and poetry. The book chronicles these emails in which I imagine to be a touching testament to their difficult journey- I shall let you know ASAP, as I shall be purchasing it from Amazon for my Kindle as soon as I finish writing this post!
This NY Times article, (that I enclose a link to below), also features the brave tales of Harry Waizer who was given only a 5 per cent chance of survival and also of Elaine Dutch who suffered truly horrific burns.
This article is highly deserved of reading, if only to be educated of the so far unspoken continuing physical trials of those affected by 9/11.

Today I remember and pay my respects to all of those lives affected by that awful day.

I remember those who died so tragically in the attacks and the events immediately thereafter.
I remember the loved ones who they left behind.
I remember those who survived the atrocities and who are still living with the physical and emotional affects of them.
And I also remember those who have lost their lives as a result of the conflicts that have come about as a consequence of that fateful day's events.

To all of those people above, I remember and honour you today and everyday.

God bless you all and be with you always.