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Thursday, 22 September 2011

The Right Road

It has come to my attention that yesterday was my 66th post. How on earth have I written that many random ramblings in such a short period of time?
With a fatigued and slightly poorly mind and spirit this evening, my initial tenuous thoughts turn to that which is synonymous with this figure- the infamous Route 66 highway- the most famous road in the USA and perhaps one of the most well known routes of travel on the globe.
Route 66 is of course the highway which dissects the great continent of North America from east to west and runs from Chicago to LA.
So many make this superficial, yet strangely seductive pilgrimage to the bright lights of ‘Tinsel Town’ on anything from a road bike to an RV- travelling along that one straight road without any chance of deviating or possibly getting themselves lost, even without the now essential accompaniment of a satellite navigational system!   
These thoughts lead me to ponder my regular concern of whether I am actually on the right road to success in creating a charity that proves successful in providing emotional support for those who become disabled; whilst also providing similar care for those partners or parents of such people, who become unwitting counsellors and carers as a result of disability through illness or injury.
As someone who can admit to perhaps always biting off a little more than they can chew- I have discovered that despite my dogged determination to establish this organisation, I can not help but become distracted from my goal by my desire to also improve the dreadful state of insufficient access on our transport systems and public and private buildings; whilst also becoming distracted by a desire to also improve the 'face' of disability- improving it from an antiquated perception of being substandard to 'normal' or deserved of pity or ridicule, to one which is accepted as commonplace and capable in our diverse society.

My problem is that I am SO passionate about ALL of the above issues and although my loyalty must lie with my primary quest to establish the infrastructure of psychological support, in the hope that many may consequently be prevented from experiencing any long term psychological issues of mental health conditions, such as PTSD and depression- I can not help but have a deep desire to make a difference in the access and diversity discrimination departments also.
I only wish that I had a fully working model of a body and mind, whilst also being blessed with an extra 18hrs in each day perhaps to boost! My frustration often consumes me- I simply want to tackle it all!!

From my recent consultations with an experienced psychologist, I finally have a validated and reinforced belief that what I am intending to do is going to be beneficial in preventing the above conditions.
I have received countless correspondences from those sharing mutual experiences of mine- (for which I am eternally grateful to you all and I assure you I am gradually working my way through replying to you ASAP) and I have also received encouragement from those in positions of esteemed power and knowledge, who believe that if my plans come to fruition, that they will make much needed improvement and help for those currently becoming disabled and being fixed up physically, yet sadly receiving nothing for the emotional fallout of such and circumstances.
Despite these encouragements, the fierce feelings of insecurity and anxiety that exist deep in the pit of my stomach, can not help but worry about whether I am truly on the right road?

As an evolving community that I have already received so many insights and ideas from, I once more ask you for your advice as to any deviations from this road/quest that you believe would be beneficial for me to take.
·         What really gets you fired up and frustrated?
·         Have any of you received any psychological support along your road to recovery and acceptance of your fate?
·         What do you deeply desire to be in place in terms of access, emotional care and image improvement for those with disabilities? 

As a constantly soul searching woman of strong Christian faith, I believe that I have experienced becoming disabled for a reason- as such, I endeavour to bring about these positive changes that I believe should already be in place.
Unless I am advised otherwise by you, I intend to continue to travel along this one straight road to the improvement of support for those who so desperately need it.

The support that I have so far received from those of you who have kindly taken the time to write to me through Twitter, Facebook or my blog page direct, is the thing that is making me smile today.
Thank you so much to you all. I assure you that I will respond to your kind correspondence individually ASAP.
Until tomorrow folks. Have a peaceful night and a peaceful, yet productive 23rd September 2011.
Face your fears and endeavour to make every day count if you are able.

 Please continue to contact me at discoverdisability@hotmail.co.uk

Wednesday, 21 September 2011

Reason to Smile- Facing One's Fears

Evening folks, I hope that you are well.
Apologies for this being yet another 'brief one', but I suppose that these shorter posts balance out the epic essays of rambling drivel that I so often subject you to!

Well, my day has been an unusual one for me that's for sure. After five years of a depressing unrelenting combination of bed, sofa, pain and an unhealthy connection to This Morning- today, I Karen Reader attended a meeting of all things! Quite bizarre and surprising I know!
Although I can't share any details of quite what this meeting was about; I can share with you just how intimidating it felt to be out of my comfort zone of PJs and slippers and to be sat at a conference table describing to sixteen people that I've never met- who I am and just what I am planning to achieve.
Despite my days working in the theatre, performing in front of countless people and choreographing and producing shows by myself- after five years of spending my time talking solely to a Golden Retriever throughout my days, (not to forget a tired and drained husband post work hours)- when it came to bringing myself to speak in front of fifteen fellow human beings- who at the end of the day, all have insecurities of their own like me, (and as my good old Nan used to say- all have to sit upon the 'thrown' whomever they may be!)- to simply open my mouth and form words, I felt huge anxiety and panic bubble in my throat to the point that I thought my voice may crack and wobble and ruin my chances of coming cross well!
Thankfully I composed myself and managed to get through my introduction without any 'snap, crackle or wobble', and finally escaped from the boardroom unscathed from any dragon's fiery breath or Sugar's humiliating put-downs. As it happened, I in fact got away with more than just my skin and actually went away from the meeting with increased confidence and of a feeling of wanting to continue to motivate myself to tackle scary scenarios head on in future; as despite a five year stop gap from the land of the living, I have come to realise that the twenty three years of life that I accrued prior to my accident, are not wasted and in fact still stand me in good stead for the future.
 The five important years that I have spent between becoming disabled and finally being physically able to start living my life again, have also been so incredibly important, as they have seen me learn so much about myself, along with the characters of those around me who have also suffered and struggled to adapt to this challenge in life.
I feel that I have learned more in this time than I did in those able bodied years previous.
Facing my fears of presenting myself as a respectable and credible person infront of those who may posess more knowledge and authority than me- is the thing that has made me smile today.
Six years ago I left what was comfortable and safe to me, to embark upon a journey into a world that I knew nothing about. The result of that leap of faith was a wonderful career, flying around the world, staying in five star hotels in counties that I had never even dreamed that I would ever have the opportunity to visit and being paid to do so!
Diving into the daunting unknown is so often fruitful and if it doesn't end up being so, then we at least learn valuable lessons about ourselves from our failures or short falls and are strengthened by the knowledge that we can take difficult steps whatever the consequences.

What has made you smile today? Please share on Twitter #ReasonToSmile or on our Facebook page http://www.facebook.com/profile.php?id=100002588247268#!/profile.php?id=100002588247268
Please also share with us any stories of scary steps that you have taken- be them successful or otherwise. These endeavours and how we cope with their outcomes are what shape us as people.

Well, as ever my 'brief one', has turned out to be of reasonable length in the end after all- what a shocker!On that note, I will stop here and at 1.47am say goodnight and God bless to every one of you.

Try and do something that scares you today. In my view it is worth it whatever the consequences.
Night night everyone.

Tuesday, 20 September 2011

Reason to Smile- The Simple Things

Evening everyone. I hope that you have had a great day.
Four days into my adventure and I'm doing okay, if perhaps a little under the weather. I may well be existing for eighty percent of the time in my PJs and surviving on a diet of Special K and orange juice, but lets face it, it's not as though I'm going to waste away anytime soon and a little slobbery every now and again never hurt anyone!
As a result of my fatigue this evening, I'm going to keep it brief if that's okay by you.
The things that have made me smile this evening are the small and simple things that those special people around have done for me today out of the kindness of their hearts:

- My friend walking Barley for me every morning at 6am
- A chirpy phone call from my wonderful mummy
- And finally, a double whammy- of a delivery of a coffee and cupcake from my neighbour when she came to pick up Barley for a walk this afternoon!

The simple things people do for one another can mean the world when the recipient is feeling a little vulnerable or under the weather.

Monday, 19 September 2011

The Sensational Sprit of Two Inspirational Sisters

Evening folks, I hope that your day has been a good one.
Well, day three of my adventure as a single woman alone, (in terms of temporary state of physical existence  and not of relationship status!), and Barley and I are still alive and maintaining sanity of sorts despite our solitude!
I am really feeling the fatigue of trying to do a few more practical things on top of my already difficult daily routine, (in terms of coping with my pain and medication side effects), and as such I have been laid out upon the sofa for the past hour or two, frustrated that my great adventure has not materialised to be quite as dynamic as I had unrealistically expected it to be!
Although a little disappointed that I am not out painting the town red, I do appreciate the benefits of aiming high in order to get the best out of one's self- even if the reality is that I fall a little under my bar of harsh expectation.
Determined to still be productive despite feeling quite jaded and under the weather as a result of the affects of my increased morphine doses- I have been using this restricted movement and cognitive function to take the time to catch up with my Twitter followers and general Twitter 'admin'. Following the usual chain of 'friends of friends', I came across the profile of a wonderful woman to inspire and ignite my tired and weary spirit.
The wonderful woman, is actually by rights at 15 years old, a girl or child by accurate description- although from a brief nosey through her profile and blog, this girl is far from childish and in fact has the strength and maturity of one well beyond her years and probably even mine!
My Reason to Smile today is the story of the marvellous Alice Pyne, who on her blog profile describes her occupation as 'Full time cancer fighter'- and what a fighter this brave girl is!
Naturally one may assume that the blog of a young, extremely poorly, cancer sufferer may be a little depressing or upsetting- but Alice's page, known as Alice's Bucket List, is in stark contrast to this natural preconception and is in fact a page of positivity and passion for productivity.
The vibe or atmosphere that this profile page evokes is indeed one of irrefutable positivity despite this young lady's difficult existence. Alice's blog posts follow her attempts to realise her dreams of ticking off her 'wish list' of things that she would love to do before her precious time cruelly runs out, along with her admirable attempts to boost the British Bone Marrow Register- a link to this page will be available at the bottom of this page.
Alice poignantly writes-   'I know that the cancer is gaining on me and it doesn't look like I'm going to win this one'. This lady's blog is one not to be passed by.
Together with the efforts of her equally inspirational sister Milly- who at 12 years old has raised over £100,000 for charity and is sadly no stranger to hospitals herself, having been born with a rare genetic condition where the bones in her skull were fused at birth- this documented journey is one of joy, despite these brave girl's incomprehensible difficulties

Wonderfully, both sisters have been nominated for The Inspiration Awards for Woman, so please visit the website for the competition through the links below and cast your votes for these inspirational individuals.

The two pages below have given me back a sense of spiritual strength after what has been a mildly tricky day in comparison to those of these brave young women.
I hope that however great or grim your day may have been, that by visiting these pages you are too provided with a boost of positivity to your spirit.

The Inspiration Awards for Woman-

Milly's story-  http://www.thesun.co.uk/sol/homepage/woman/article619340.ece
British Bone Marrow Registry- http://www.nhsbt.nhs.uk/bonemarrow/index.asp

Sunday, 18 September 2011

The Exhilaration of Rediscovering Independence

Saturday 17th September 2011     2.14 pm
59 minutes ago, I embarked upon my latest adventure- living alone with my Barley dog, (an oxymoron of sorts I'm aware, but you know what I mean!), without any carers, parents or husband for company and support.
Before you start to worry, Garry has not finally cracked trying to cope with his testing life as my husband/carer/counsellor and confidant combined and run screaming for the hills- he has simply had to go away for 11 days with work and I am simply living in my own flat unaccompanied by carers whilst he does so.
The enormity of these circumstances, is I'm sure escaping  many of you who have 'normal' lives, (I quiver as I write this ridiculous term, but at 2.29am and consumed by pain and fatigue I struggle for another adjective to equate), however for someone such as me who has been stripped of any form of independence for a number of years, the challenge that lays before me feels undoubtedly daunting, yet all the same strangely exhilarating!
Having hugged and kissed and waved Barley and I goodbye, Garry has just set off upon his long drive to the south coast- thus initiating the beginning of this challenge of mine to strive to regain a sense of the old independent me, that has naturally become a little lost and hidden beneath the complex layers of issues and injuries!
To give this situation some perspective, the last time that Garry had to go away for work, I had to live with my parents for two and a half months as I was at the time pretty poorly and bed bound for round 80% of the time and therefore not strong enough to look after myself and Barley.
Currently still bed bound a fair amount of my days, I'm unfortunately not going to be living in complete solitude on this occasion either, so am regrettably still reliant upon others to check on me and help with Barley upwards of two or three times a day; despite this, the butterflies refuse to subside at the prospect of my challenge- I'm predominantly going to be caring for myself, a situation that hasn't been so since 2006!
To many, this may be a strange thing to get excited about; after all, it's the basis of our day, from which all of the exciting things in our lives are built upon to simply exist independently- but after the frustration of years of relying upon home nurses, carers and loved ones for everything from dinners to dressing and bathing to blow-drying- this seemingly simple circumstance subsequently becomes a momentous mile stone indeed!
 Despite my excitement at Garry's departure, there is of course no doubt at all that I appreciate and love my husband more than anything in the world and will no doubt be missing him immensely within hours I'm sure; but the real and old me that is hidden deep beneath the insecurities and concentration problems born of my pain and the medication for said pain, has always been a fiercely independent person and deep down still desperately yearns to be openly once more.
In my lucid and logical reflections, I recognise and remember that that independent person is who Garry fell in love with. That person is the person I strive to rediscover a little more everyday and with this adventure I believe I will move considerably closer towards achieving this.
 My first real taste of that wonderful emotion that is iindependence came about when at sixteen years old I received my scholarship to dance school and I left my sheltered and secure home on the Isle of Wight to live and study in the daunting yet dynamic city of London. By 18 years old I was renting a flat alone and by 23 I once again left my comfortable circumstances to move alone to Gatwick to embark upon a new career as cabin crew for Virgin Atlantic Airways to travel and explore this wondrous world of ours.
It was my time working for Virgin Atlantic that I regard as one of my most exciting and I look back upon this period with such fondness as I remember the feisty, energetic 'Old Kaz', who would dart about the country visiting friends and family in her days off between trips, before jetting back off to New York, Barbados or Australia. I have said it before and I have no qualms in saying it again- that truly was the time of my life!
It was during this golden nomadic era that I met my now husband and began the whirlwind romance that would see me semi moved-in, ( well, living out my suitcase and car boot whilst in the country!), within a mere couple of months.
Although things moved quickly with this new and exciting relationship, I still had my independent existence at work, be it in my time in my hotel in whatever country I had flown to that week, or in exploring the sights and sounds of a new city either by myself (which I dearly loved), or with my crew, who I would invariably have never worked with before.
That fateful summer's day of 2006 that I experienced that minor yet momentous car accident, saw my independence ripped from me like a plaster seemingly super-glued too the skin. From that point onwards, I was reliant upon my new beau whom I hadn't even left the toilet door open in front yet, to lift me into the bath, dress me and even place me upon the toilet!
The independence that I had loved so dearly since the age of 16 when I arrived in this vibrant and exciting city to pursue my dream had gone- but why should I never experience that feeling, or a degree of it ever again?
Well 12 years on and I am back in that city that I fell in love with so dearly as a teenager and ready to do my best to rediscover that wonderful emotion that many of us take so much for granted each day as we simply walk out of our own front door or drive ourselves to work.
 This time around I may not be able to dart around the capitol from bar to club on dangerously high heels; I may not even be able to make it further than wheeling myself around my own little area of SW London with my dog as companionship, but this is still nonetheless an adventure- my adventure, which considering for the majority of the last five years the nearest I have come to such has been merely making down the corridor to sit in the living room with my husband, I feel that there has been marked improvement and there will hopefully continue to be so as I strive to regain that essence of the old me once again.

Well, it is now Sunday afternoon and I'm pleased to report that Barley and I are still alive and maintaining some semblance of civilised living- if you can call consuming the left overs of Friday night's takeaway for Sunday brunch whilst curled up on the sofa devouring the Sunday papers doing so, then yes, we're succeeding and surviving!
As with most things since becoming disabled, my aspirations and achievements have somewhat adjusted to what is actually achievable for the new me and not the old. There is no doubt in my mind that becoming disabled and subsequently reliant upon others for simple things, has certainly drained me of a certain sense of the spirit of that person that took on these challenges and adventures.
I may no longer be able to hold down a wonderful job that I loved.
I may no longer be able to keep fit and maintain my old size by running, cycling and swimming.
I may no longer be able to to visit friends and family whenever I feel like it and keep up with an active social life- but what I can do is appreciate those small achievements such as this.
For the first time since becoming disabled I am strong enough to be able to live alone for a week and a half- and for the new me that is bigger and more important than all of the above combined!
Well, wish me luck as I embark upon my adventure...
Regaining some sense of that old adventurous independent me, is the thing making me smile today!
What is making you smile today? Please share on our Facebook Page
Until tomorrow everyone, I hope that you've had a wonderful weekend!