Not wanting to be negative, and always looking for the positive aspects of my " new " life, now governed by a chair, I begin this blog with a new realisation of the frustration and perhaps realisation of just how restricting it can be to live life without legs !!! I will post pics on FB - as we still cannot upload to blog site.
London celebrated Pride Day . And for reasons of my injury, I've not supported the amazing event for the last three years, and arrange to meet friends there. With current rail works and various underground upgrading programs, my journey requires some missioning and planning to get there, coupled with road closures, no bus service etc etc. Meezie and I set off to Waterloo, with the intention of making our way to the South Bank, crossing over the river, up the hill into the heart of Soho !. Well....... Not to be !! It's summer, beautiful weather, the city is teaming with people out and about enjoying the seldom seen blue sky's - baby buggies, smiling faces and the usual summer tourists visiting this beautiful city of London. You might have seen my " bitch fit " on FB, about this, and the accessibility issues I had with broken lifts, closed roads etc etc etc, rendering the inability to actually get there !!! Totally unacceptable, but have " sucked it up " am over it and have things in hand to ensure it won't happen next year !. If ya can't beat them,.... Join them !!! So...., I called up the organisers, and listed to have a float in the parade in 2017 !! Going to need all you guys in the same situation to come forward and help with a fundraising / team to pull it all together !. This WE can do...........
Although being very realistic, and really not wanting to alter universal tilt space,I can happily say that the awesome foursome gang is working so well !! The relaxed atmosphere, total respect and ongoing banter between us all is a seldom " achieved " scenario. One needs to make it happen and that's exactly what I've done to achieve a balance in my everyday living. Now, the next step is to take complete control of my ' Ongoing Health Care ' budget from the council, which they are happy to do, enabling me the freedom of choice to obtain and regain as much independence as possible. Bring it on !!!! Will also post video's of muscle tone improvement and mobility, through continual daily excersizes and FES stimulation. Dianna- Bella introducing various new stretch excersises which sees me in various rather contorted positions, but are working wonders. Not to mention her acupuncture sessions which have seriously reduced the neuro pain to my " one and only " - right arm.
As much as I've tried to deny it, one loses ones confidence with SCI, and if I look back at life prior to injury, and the confidence one is left with post injury...... Well..... We have to rebuild it all over again. The body changes, not for the better - trust me !!, the constant fatigue, the " belt height " existence, not being able to jay walk, running for the last tube, etc etc etc and worst of all the constant ' apologising ' for holding lines up, getting through doorways, to name but a few....... But, having now accepted this lot ( for the now ), I'm working on the emotional rebuilding of confidence, can do attitude, and WILL scream and shout to be heard as a person rather than being labled as a " disabled " being !!! It really pisses on my battery when you get to a lift queue 10 deep and 8 out of the 10 are fat, lazy sods, too lazy to take steps and escalators as the way out !! I have my say..... Ask, and embarrass is my new motto. It was only a week or so ago that I was at Waterloo station trying to get 1 floor up in a 8 deep line. The majority, abled bodied, fat arsed people, nibbling on Pringles and cupcakes - NO GO !!! Honked the horn, pushed to the front and asked why they don't take the escalator or stairs ???? Seldom, any effect, less so from the perfectly fit youngsters who pretend they don't hear or understand - so I let the overcrowded lift doors close, and look up at one of the gang and simply say " don't you find it f@@king embarrassing that we've had to wait for a lift and 90% of the people in here are capable of standing on an escalator ?" You can feel the embarrassing atmosphere !! And then to top it, if there are various levels, I'll push all stops, knowing full well which one I'm getting out on - but when we stop at the first, I announce this is mine, and half the lift has to exit in order for me to get out..... And halfway through the door I simply say " oh no, not this one " offering no apology, feeling no embaresment, and relishing in the frustration of the rest of the occupants !
As you guys know, I've taken to antique markets, boot sales, charity shops and now dabbling in recycled furniture dealings. A great source of interacting with the public and as I've realised - making new friends. There's a small, but very interesting antique market on a Friday, not far from me. On my first visit, I was immediately attracted to a stall that had rather unusual bric-a-brac type antiques, manned by a completely " out of the box " guy, mixed dress style, friendly, intelligent, witty and totally embracing ! And a complete flirt with the ladies !! He just wants to take Dianna out on a date. So I get chatting with him and he asks me what I'm looking for ?. " knobs ", I answer............ Well say no more........... Far to crude to be divulging how the convo went, but did clarify that they were for drawer and cupboard doors. As the weeks have passed, Benjamin and myself have become quite friendly, and in passing he mentioned to me that he had bought a hearse ( yes, a dinkum fully fledged body carrying hearse ). He explained that he could get his stock in, park anywhere and have peace of mind of no theft !!! I thought he was stringing me along until he offered to show it to me ! Do look for the pics on FB.
So.... With my warped sence of humour, I asked him if he would be prepared to drive me into the middle of Soho one Saturday afternoon to meet friends - in the hearse of course !! He thought it was an outrageously great idea, and agreed. Can you just imagine the stares !!!! Gonna do it and will take loads of pics.
As for my health, and well being, I cannot complain !! At the end of this month will be my two year anniversary of my release from Alcatraz , and November marks my third year since my injury. The frustratingly slow progress, coupled with the endless periods of no improvement continues to instill a zest to keep up the daily physical regimes to keep my body at optimum functional level as possible given its state. It is now very apparent, and was explained to me at the onset, that I have completely lost all function in my left hand. As it has started to now claw quite badly, and have no response to electrical stimuli, my consultant, physios and OT at Alcatraz can offer no further treatment. It's been agreed, and I have an appointment early September with them and the surgeon to consider surgery to sever the tendons and muscles to avoid the disfigured look of a claw like hand. It's not about being defeatist, but rather about being realistic, which I have processed and am totally comfortable with. I'm not giving up on my recovery, but sometimes we need to sacrifice a bit of what we have to concentrate on improvement on other parts of our beings.
So following the correct channels, in order to get the go ahead I had to speak to my shrink. All the usual questions..... Do I feel anger, anxious, depressed, hard done by........... For having another " thing " taken away ? I had, and have thought all these emotions through, processed them, meditated, you name it !! And NO, very definitely none of the above applied ! In my opinion, it's all too easy to blame " life ", and what life has dealt us ! Take a step out of the equation and look at it from a different angle - What does " life " want from us ??? Do we give life any justice ? do we give life any credit ? Do we ever ask life what it wants from us ??? No, most of us never think about it do we !?? Ok enough lecturing..... But do think about it !!
Just had the most exciting two week visit from my sister Caryn, from Auz. She hadn't been to Lnd for almost 25 years so we did loads of sightseeing, marketing, eating and drinking. Don't know which one of us was more exhausted !! I think I kinda shocked her with the outspokenness I've inherited, my homeless buddies out on the streets as well as gnawing on dog biscuits on the tubes !!! What fun, what fun !!.
Well, good people, will blog again soon ! Sent with love and ongoing good health wishes ! Remember, embrace life, and give it what it wants !!! Later..
Gav
Friday, 19 August 2016
Wednesday, 8 June 2016
Finding my LEGS again: Coffins, Caskettes, or Cardboard boxes..... ???
Finding my LEGS again: Coffins, Caskettes, or Cardboard boxes..... ???: So my journey continues........ And, with the journey comes realities that people really don't like to face ! Mine, on the other hand ha...
Coffins, Caskettes, or Cardboard boxes..... ???
So my journey continues........ And, with the journey comes realities that people really don't like to face ! Mine, on the other hand has been one of acceptance, trying to make it work, reaching out to people in the same position, and most of all.... Getting people to realise that there can be life after SCI !!! Sadly, I have to admit that the various organisations employing people to portray the positiveness of life changing circumstances are bound by the " ticking of the boxes " syndrome ! It's been interesting receiving the re-buffs of " too newly injured, too out spoken, not the norm !! " etc etc....... But then,..... Perhaps I never did fit into any box, and in hindsight, no box was ever made for me !! This I find hard to believe, and will, against all odds find a charity to support my cause - I remember only too well the five months on my back in Royal London where nobody offered any support or answers !! Or just shear encouragement !! A statistic waiting to happen, waiting for any form of progress, a stat to notch up another medical feat for a journal paper,..... With total realisation, that in actual fact, " they " don't really know !! Is it not fair to just be honest and say so ??? But, with a little encouragement from a fellow injured person, could go a long way in the realisation and coping mechanism of experiencing this life changing experience ??. Just tell it as it is !!
Having had my last few assessments, and been given the factual evidence that I have a 40% chance of a relapse - diminishing every year by about 2% - I can count myself as lucky. 6 months of stabilising, 2 weeks in the brain injury facility whilst awaiting my bed at Alcatraz , and then 7 months in Alcatraz ! Being released back into society as a newly recruited disabled person, I decided to get all my affairs in order ! Macabre, but a reality that I never considered before ! Do you have a will ??? If so, when was it last updated ? Life insurance ? Do you have it ?? Is it worth it ?? Etc etc etc. so with a " balls to the walls " approach, I sat for a morning making a list of what responsible people SHOULD do !! Dealing with death !! Please, Please, don't think it's macabre - it's a reality and something guaranteed all of us. First comes birth, and from that moment onwards we are all guaranteed the final outcome of life's ending - be it long lived or short lived ! Whichever way one looks at it, it's a finite equation of being. Some scared, some not thinking about it, some not interested, and some welcoming thereof !! I am totally at peace with it, and frankly, welcome it.
So, trying to be mature, and responsible about my situation ,and thinking ahead, I decide to wheel down to the local funeral parlour to chat about the " what if's " scenario. Have I got an appointment I'm asked as I enter. " no", I answer, but I'm merely here to put a policy into place, should the end happen !!!
I'm upbeat, cheerful, and happy to be discussing what would happen to me should the inevitable happen sooner rather than later ! Well....... " Death on two legs " A tall skinny, large nosed, morbid, creepy man comes out from behind the velvet curtains to help me with my enquiry, whilst Low key piano music is piped into the reception area ! Not at all cheerful, no smiley faces and all so ever serious !! Oh fak ! I think to myself...... But I'm here now, so let's do it !!! Let's find out how it all works,........ And the conversation goes as follows.......
" Good morning "
" Hi "
" I'm so sorry to hear of your loss "
" What loss? "
" Well you must have suffered a loss to be here, looking for assistance with a funeral arrangement ? "
" No, I'm here to Discuss my own death and perhaps getting some policy into place.
Silence, nose pulled higher, skin tone slightly greyer, and piped music seems louder !!!
" I'm looking ahead, and considering a policy that will take care of me should I pass "
" Oh "
" Oh, and another OH " !!!!!!!!
" well, you've come to the right place then "
" I would have thought so, coz you are the only shop with Caskettes and tomb stones in the window display "
Pursed lips, greyer in skin tone, and I can almost hear his kneecaps knocking together in antissipation of selling me a " good deal " ...... A collect, dress up, state of the art box, burning or burying proces etc etc etc.... Those beady little eyes staring straight through me as if I was dead already !!!
" Well then, Dr Grim says " " let's start with the top of the range arrangements " Hurse, coffin, cars to transport family, church, flowers, snacks and catering for afterwards, printing of eulogy for the service, more counselling for the bereaved , trip home for the dearly beloved left behind, etc etc etc...... Viewing of the coffins, handles, and all the shit that goes with it ! Silk or rayon linings, embalming, open or closed box, ........ All the while the music playing sombre tunes to get ones emotions into overdrive.
" I don't think you get me "
" I'm looking for a no-frills, pine box, toss me in and burn me kinda deal "
" you must have more respect for the hereafter " I'm told !! And what about a marble plaque for the wall of rememberence etc etc.
"Oh forget that " at another £500 who the hell is gonna come and look at a slab of marble on a wall ??? All I'm looking for is collection, burning and collection of some dust to be scattered ! Preferably over lake Como in Italy !! No frills, no fuss, no grandiose boxes etc..... Dr Grim, is losin patience with me - I'm happy to settle for a simple pine box, rope handles, maybe not even a church service, or if so, can't I get my carers to use my own vehicle to get me to the church ?"
A very stern " No !!! " - it's against the law !!! and then a long winded lecture on costs from £6000 - £15 000, dependent on life expectancy , based on inflation etc etc etc - and to get the basics, at imminent death rate, the policy works out at an exorbitant monthly cost !!! At that rate, I tell Dr Grim " that I would need to die very quickly in order to keep up the payments. And, I throw in - does the policy cover " suicide " then ?.......... I even had the cheek to ask him if there was any disabled discount !!!! Another long, long silence , grimmer glare, frustration written all over his face.......... Adding fuel to the fire, I push on - and ask him about a paupers funeral as an option. Well, he says, that's not something his company can do. My body would have to be collected by the state, taken to a state morgue, not claimed for a certain length of time, and then burnt along side a collection of other " no claims " !!!!! Basically a " Jane Doe " situation. Well then, I say, that's gonna be my option !! Literally before I can thank him for his time, he stands up an kinda ushers me out of the parlour clearly realising that he ain't gonna get me as a client !!. Had to smile to myself, because in my life, I have been kicked out of bars, clubs, and various other venues, but NEVER a funeral parlour ..........
Back out on the pavement feeling somewhat Disallusioned at the fact that death is not only a costly affair, it's something governed by laws that kinda put you between a rock and a hard stone ! It's ironic the process really - they collect you warm, then they chill you in the fridge, then they heat you up to temps of 1000 degrees, scrape and crush the left overs, decant into a box and that's it !!. So I'm onto plan B. And I know with some help from my friend Lise', and a little research on the net we'll come up with a " do it yourself " plan, saving money, time and the hassle left behind for the family ! - will keep you posted !.
Home life is finally settled and great. The awesome foursome in full swing. Mischki and Martini, the live in's alternating perfectly between shifts, coordinating their flights between Czech republic and the U.K. Then darling Diaana-Bella here Mon - Fri, and Meezie here on the weekends. An amazing atmosphere, with no issues, friendly banter and professional attitude and respect with clinical care. Diana has me on a diet, but allows me " cheat treats " most of the time, and is a qualified OT.
Looking at all avenues to rejuvenate progress with my body and the yearning to conquer my situation, coupled with the fact that I am not experiencing muscle degeneration, something Alcatraz cannot explain ! I have done lots of research on maintaining muscle form. It's recommended that deep tissue massage can activate or stimulate nerve ending growth and activity. WHAT a trip it's been !!! I've been onto various forums and asked for recommendations etc etc, most of which required travel, transfer from chair to table......... Having to overcome stairs......... Not gonna work given my situation.
So I go on line looking for a masseuse willing to do house calls. Oh there are plenty...... And I mean plenty !!!! Starting with " Blond chick with huge jugs for memorable massage " to " Huge stallion for deep encounter " etc etc, the list goes on and on ........ Then, via one of the forums, I received an email from a massage therapist by the name of Jon. Completely confident with SCI people, qualified in various techniques of massage, and willing to do home calls. BUT, you have to be seen by him prior to any therapy, or unless you are a recommendation. First we had a telephone conversation , then a meeting at home to set up a therapy program for what suits one as an individual. Thoroughly professional , and with his permission will post his website for anyone in the London area looking to de-stress via massage. It is : www.londonhomemassage.uk. Highly recommended !!!
Well my friends, that's the news for the moment. The shadows need to be behind you in order to move forward !! Let go of the small stuff and be greatful for the ups and downs ! As always, written with love and ongoing good wishes !!
G.
Having had my last few assessments, and been given the factual evidence that I have a 40% chance of a relapse - diminishing every year by about 2% - I can count myself as lucky. 6 months of stabilising, 2 weeks in the brain injury facility whilst awaiting my bed at Alcatraz , and then 7 months in Alcatraz ! Being released back into society as a newly recruited disabled person, I decided to get all my affairs in order ! Macabre, but a reality that I never considered before ! Do you have a will ??? If so, when was it last updated ? Life insurance ? Do you have it ?? Is it worth it ?? Etc etc etc. so with a " balls to the walls " approach, I sat for a morning making a list of what responsible people SHOULD do !! Dealing with death !! Please, Please, don't think it's macabre - it's a reality and something guaranteed all of us. First comes birth, and from that moment onwards we are all guaranteed the final outcome of life's ending - be it long lived or short lived ! Whichever way one looks at it, it's a finite equation of being. Some scared, some not thinking about it, some not interested, and some welcoming thereof !! I am totally at peace with it, and frankly, welcome it.
So, trying to be mature, and responsible about my situation ,and thinking ahead, I decide to wheel down to the local funeral parlour to chat about the " what if's " scenario. Have I got an appointment I'm asked as I enter. " no", I answer, but I'm merely here to put a policy into place, should the end happen !!!
I'm upbeat, cheerful, and happy to be discussing what would happen to me should the inevitable happen sooner rather than later ! Well....... " Death on two legs " A tall skinny, large nosed, morbid, creepy man comes out from behind the velvet curtains to help me with my enquiry, whilst Low key piano music is piped into the reception area ! Not at all cheerful, no smiley faces and all so ever serious !! Oh fak ! I think to myself...... But I'm here now, so let's do it !!! Let's find out how it all works,........ And the conversation goes as follows.......
" Good morning "
" Hi "
" I'm so sorry to hear of your loss "
" What loss? "
" Well you must have suffered a loss to be here, looking for assistance with a funeral arrangement ? "
" No, I'm here to Discuss my own death and perhaps getting some policy into place.
Silence, nose pulled higher, skin tone slightly greyer, and piped music seems louder !!!
" I'm looking ahead, and considering a policy that will take care of me should I pass "
" Oh "
" Oh, and another OH " !!!!!!!!
" well, you've come to the right place then "
" I would have thought so, coz you are the only shop with Caskettes and tomb stones in the window display "
Pursed lips, greyer in skin tone, and I can almost hear his kneecaps knocking together in antissipation of selling me a " good deal " ...... A collect, dress up, state of the art box, burning or burying proces etc etc etc.... Those beady little eyes staring straight through me as if I was dead already !!!
" Well then, Dr Grim says " " let's start with the top of the range arrangements " Hurse, coffin, cars to transport family, church, flowers, snacks and catering for afterwards, printing of eulogy for the service, more counselling for the bereaved , trip home for the dearly beloved left behind, etc etc etc...... Viewing of the coffins, handles, and all the shit that goes with it ! Silk or rayon linings, embalming, open or closed box, ........ All the while the music playing sombre tunes to get ones emotions into overdrive.
" I don't think you get me "
" I'm looking for a no-frills, pine box, toss me in and burn me kinda deal "
" you must have more respect for the hereafter " I'm told !! And what about a marble plaque for the wall of rememberence etc etc.
"Oh forget that " at another £500 who the hell is gonna come and look at a slab of marble on a wall ??? All I'm looking for is collection, burning and collection of some dust to be scattered ! Preferably over lake Como in Italy !! No frills, no fuss, no grandiose boxes etc..... Dr Grim, is losin patience with me - I'm happy to settle for a simple pine box, rope handles, maybe not even a church service, or if so, can't I get my carers to use my own vehicle to get me to the church ?"
A very stern " No !!! " - it's against the law !!! and then a long winded lecture on costs from £6000 - £15 000, dependent on life expectancy , based on inflation etc etc etc - and to get the basics, at imminent death rate, the policy works out at an exorbitant monthly cost !!! At that rate, I tell Dr Grim " that I would need to die very quickly in order to keep up the payments. And, I throw in - does the policy cover " suicide " then ?.......... I even had the cheek to ask him if there was any disabled discount !!!! Another long, long silence , grimmer glare, frustration written all over his face.......... Adding fuel to the fire, I push on - and ask him about a paupers funeral as an option. Well, he says, that's not something his company can do. My body would have to be collected by the state, taken to a state morgue, not claimed for a certain length of time, and then burnt along side a collection of other " no claims " !!!!! Basically a " Jane Doe " situation. Well then, I say, that's gonna be my option !! Literally before I can thank him for his time, he stands up an kinda ushers me out of the parlour clearly realising that he ain't gonna get me as a client !!. Had to smile to myself, because in my life, I have been kicked out of bars, clubs, and various other venues, but NEVER a funeral parlour ..........
Back out on the pavement feeling somewhat Disallusioned at the fact that death is not only a costly affair, it's something governed by laws that kinda put you between a rock and a hard stone ! It's ironic the process really - they collect you warm, then they chill you in the fridge, then they heat you up to temps of 1000 degrees, scrape and crush the left overs, decant into a box and that's it !!. So I'm onto plan B. And I know with some help from my friend Lise', and a little research on the net we'll come up with a " do it yourself " plan, saving money, time and the hassle left behind for the family ! - will keep you posted !.
Home life is finally settled and great. The awesome foursome in full swing. Mischki and Martini, the live in's alternating perfectly between shifts, coordinating their flights between Czech republic and the U.K. Then darling Diaana-Bella here Mon - Fri, and Meezie here on the weekends. An amazing atmosphere, with no issues, friendly banter and professional attitude and respect with clinical care. Diana has me on a diet, but allows me " cheat treats " most of the time, and is a qualified OT.
Looking at all avenues to rejuvenate progress with my body and the yearning to conquer my situation, coupled with the fact that I am not experiencing muscle degeneration, something Alcatraz cannot explain ! I have done lots of research on maintaining muscle form. It's recommended that deep tissue massage can activate or stimulate nerve ending growth and activity. WHAT a trip it's been !!! I've been onto various forums and asked for recommendations etc etc, most of which required travel, transfer from chair to table......... Having to overcome stairs......... Not gonna work given my situation.
So I go on line looking for a masseuse willing to do house calls. Oh there are plenty...... And I mean plenty !!!! Starting with " Blond chick with huge jugs for memorable massage " to " Huge stallion for deep encounter " etc etc, the list goes on and on ........ Then, via one of the forums, I received an email from a massage therapist by the name of Jon. Completely confident with SCI people, qualified in various techniques of massage, and willing to do home calls. BUT, you have to be seen by him prior to any therapy, or unless you are a recommendation. First we had a telephone conversation , then a meeting at home to set up a therapy program for what suits one as an individual. Thoroughly professional , and with his permission will post his website for anyone in the London area looking to de-stress via massage. It is : www.londonhomemassage.uk. Highly recommended !!!
Well my friends, that's the news for the moment. The shadows need to be behind you in order to move forward !! Let go of the small stuff and be greatful for the ups and downs ! As always, written with love and ongoing good wishes !!
G.
Wednesday, 18 May 2016
Zero to 50, then 50 to Zero !!!
And so the story continues, a journey of eternal belief that one day this body of mine will wake up and work ! This may be a long blog, but humour me in your persistence of my journey. To connect nerve endings to brain connecting in my ever, ongoing quest of finding my legs again. Things have been a little slow of late as my right hip has been giving me a bit of jib. So, OT's slow passive Physio exersizes continue until such time as we get the orthopaedic specialists report from the scans, X-rays and MRI's - we wait in hope !!!
In a " nut shell ", and responding to the many enquirers from you guys about my life prior to my injury, I was born into an average middle class family, hatched in Northern Rhodesia, a British Colony at the time, now known as Zambia. Relocated to South Africa, come from divorced parents, amicably , both re-married, with an injection of numerous siblings, educated in a private Christian school, and went on to study horticulture. Rather for the name than the passion, and partly to delay the compulsory military service at the time in SA. Enlisted, did my time, only to finish with a " what now " attitude ? Dabbled in the plant world for a while, trying to find my feet in life again, with little satisfaction, and them made a, what I thought would be an easy change to my life........
It was a decision that would alter friendships, bring heartache and pain to all around me, most of all to myself, but looking back now it's a choice I would definitely take again - but this time without the immature honesty that I had all those years ago. I was free, I was selfish, I was out to take life on, and how wrong I was, how incredibly hard the road I had chosen would be, I never imagined !!! Skip a couple of years, and....... The partying, the recreational drugs, the self absorbed ego of being in control of myself soon began to diminish into a downward spiral of " up all night and sleep all day " scenario. Fate has a way of good intentions, and I was one of the fortunate ones in the crowd of friends I was hanging with - as we slowly watched each other starting to lose life's values, possessions, control, our businesses, and even our friendship !!!
Talking about fate, years previous to this party phase I was introduced to an incredibly intuitive lady by the name of Di, who later became a friend, then business partner, then soulmate - who never gave up on me. Never judged and never labled me. Many, and I mean MANY a morning banging on my door to haul me out of my bed and get me to work etc etc. I was half way there ! And am eternally greatful to her. Then one night I met someone by the name of Cyril, who, himself had been through life's cruel twists of fate. He was successful, anti drugs, a huge grounding influence on my life - instilling a new outlook in my attitude towards life and the future - again, eternally greatful to him for helping me re-focus my life. All through this incredibly destructive phase I was going through, was Greg, another huge influence in pulling my life, and the lives of all of the gang together. We were acquaintances rather than friends, until he lost his life long partner to cancer. We started meeting a couple of times a week to walk the sea front promenade - it was his gentle coaxing and our deep conversations that I will remember for life ! We became real friends ! - Thank you Greg !!! Not withstanding the above and not forgetting my wide circle of friends and family, who all played a part in my getting out of the big black hole I was trying so hard to get out of. Some knowing, but most not actually knowing what was really going on.
So, back to the more recent. Seven years ago I made the decision to relocate to London, leaving behind my friends, family and fantastic social life. Moved, created a new life here and give thanks to JJ for the wonderful apartment sharing we had at No 97 !!!. I had a job, a life, a freedom of Londons arts, culture, and hardships that come with living in the city that Oscar Wilde stated " when you tire of London, you tire of life ".
I joined the 50's club here and fate decided to play a curved ball !!! Devastating changes to my lifestyle - and a life changing injury called SCI - I'm cripple, wheelchair bound, and happy ! Yes happy, and thankful for the function that the universe has restored in me !! Happy to be alive, although not scared of death ! Happy to share my experience and more determined to make a difference to abled bodied or disabled people. that folks is where I'm at. So 0 to 50, able bodied and thankful for the 50 years of experiencing life with legs. 50 to 0, within a mere half hour, life changing spinal bleed, which has changed my life forever, opened different doors, and made me so aware of just how fragile life is !! Be thankful for what you have, be it good, be it bad, be it what you think is a major problem - just embrace, accept and conquer life's cards dealt to you.
And back to the present !!. Every SCI has a different outcome as to the gaining of mobility and recovery - some far more gainful, some less, and some, heartbreakingly non existent. One of the predominant aspects of this condition so evident during rehab was the sexual function after injury. Dependent on ones level of injury, determines the function of what boils down to basics of life - Sex !, love-making,... Call it what you want ! During rehab, " they " offer clinics, viagra, cialis, sexual aid advice etc etc etc, WELL.... I had my first sexual experience, in public just the other day..... And it goes like this......
With a one day cover of a double up carer, a tiny Philipino girl, Gracie, we decide to troll the high streets of second hand furniture, charity shops and bargains on offer. I get bored with the one shop and opt to go out for a cigg whilst she finishes up inside. I'm outside, minding my own business, getting my cigs and lighter out, lighting up ( and unbeknown to me Gracie has come out and is behind me ). Up walks a rather scruffy elderly lady with bleach blond greasy hair, smiles at me, lifts my bag on my lap and proceeds to grab my privates and says " ya want some of this ?, I give you squeeze and pleasure ! " I'm lost for words, slap her hand away, she giggles, repeats the ball and claw groping of my privates, and says " I just want a cigg, luv ". I give her a cigg on the condition she goes away. Gracie then asks me if she is a friend of mine. NO, I answer, and Gracie says..... " But shi grabba jor coki !! "
Shi notta loud to tucha jor coki, I tell her to fuka orf !!! ". So, friends, there is hope !, I had my first sexual encounter with a chav, aging bag-lady on the high street !!!
Then, a couple of Sunday's ago, Meezie and I head out to the Shorditch antique / boot market. We have a private system going where we decide what we want, he goes back and offers a low bid, gets rejected, then I go back and offer a little more. Sometimes we are lucky, sometimes not, but it's fun all the same !! And we have a good laugh. So whilst he's gone I'm sitting on the pavement and a dodgy, rasta man sidles up to me and asks if I smoke gunga, or need pills, or snow ( coke ). I mean...., the only cripple within a 10 mile radius and this geyser hits on me !!! I look up at him and say " yes, how much do you need ? "....... He looks at me, gob smacked ! And then I say " listern, MATE, I'm an undercover cop, and we are doing a surveillance reiki here ". You could almost see him turn white !!! Gone, faded into the crowd like dust !!
Finally, after two months of carer shuffling, negotiations with care company and my recruiting of PA's, this week has begun with, hopefully our awesome foursome team. Mishki and Martini alternating as live In's - both Czech, martini recruited from my ski trip, both competent, respectful of all needs and running on a two week on / off basis allowing them to go back to Czech Republic on their off period. Diana, also recruited from my Sweden trip has started as my Monday to Friday double up. OT and Physio trained and a gem to have on board - willing, able and totally competent with all needed for my daily care and wellbeing !!! Will post pics of us all soon.
Having entered into my third year since my injury, and learned so much along this journey, I remain positive in making a difference with seeing the world from a different perspective. Always be appreciative of what you have, be it small or large, let go of the small stuff, and tell the ones you love !! - Life is fragile and unpredictable.
Posted with love and ongoing good health wishes !!!
G.
In a " nut shell ", and responding to the many enquirers from you guys about my life prior to my injury, I was born into an average middle class family, hatched in Northern Rhodesia, a British Colony at the time, now known as Zambia. Relocated to South Africa, come from divorced parents, amicably , both re-married, with an injection of numerous siblings, educated in a private Christian school, and went on to study horticulture. Rather for the name than the passion, and partly to delay the compulsory military service at the time in SA. Enlisted, did my time, only to finish with a " what now " attitude ? Dabbled in the plant world for a while, trying to find my feet in life again, with little satisfaction, and them made a, what I thought would be an easy change to my life........
It was a decision that would alter friendships, bring heartache and pain to all around me, most of all to myself, but looking back now it's a choice I would definitely take again - but this time without the immature honesty that I had all those years ago. I was free, I was selfish, I was out to take life on, and how wrong I was, how incredibly hard the road I had chosen would be, I never imagined !!! Skip a couple of years, and....... The partying, the recreational drugs, the self absorbed ego of being in control of myself soon began to diminish into a downward spiral of " up all night and sleep all day " scenario. Fate has a way of good intentions, and I was one of the fortunate ones in the crowd of friends I was hanging with - as we slowly watched each other starting to lose life's values, possessions, control, our businesses, and even our friendship !!!
Talking about fate, years previous to this party phase I was introduced to an incredibly intuitive lady by the name of Di, who later became a friend, then business partner, then soulmate - who never gave up on me. Never judged and never labled me. Many, and I mean MANY a morning banging on my door to haul me out of my bed and get me to work etc etc. I was half way there ! And am eternally greatful to her. Then one night I met someone by the name of Cyril, who, himself had been through life's cruel twists of fate. He was successful, anti drugs, a huge grounding influence on my life - instilling a new outlook in my attitude towards life and the future - again, eternally greatful to him for helping me re-focus my life. All through this incredibly destructive phase I was going through, was Greg, another huge influence in pulling my life, and the lives of all of the gang together. We were acquaintances rather than friends, until he lost his life long partner to cancer. We started meeting a couple of times a week to walk the sea front promenade - it was his gentle coaxing and our deep conversations that I will remember for life ! We became real friends ! - Thank you Greg !!! Not withstanding the above and not forgetting my wide circle of friends and family, who all played a part in my getting out of the big black hole I was trying so hard to get out of. Some knowing, but most not actually knowing what was really going on.
So, back to the more recent. Seven years ago I made the decision to relocate to London, leaving behind my friends, family and fantastic social life. Moved, created a new life here and give thanks to JJ for the wonderful apartment sharing we had at No 97 !!!. I had a job, a life, a freedom of Londons arts, culture, and hardships that come with living in the city that Oscar Wilde stated " when you tire of London, you tire of life ".
I joined the 50's club here and fate decided to play a curved ball !!! Devastating changes to my lifestyle - and a life changing injury called SCI - I'm cripple, wheelchair bound, and happy ! Yes happy, and thankful for the function that the universe has restored in me !! Happy to be alive, although not scared of death ! Happy to share my experience and more determined to make a difference to abled bodied or disabled people. that folks is where I'm at. So 0 to 50, able bodied and thankful for the 50 years of experiencing life with legs. 50 to 0, within a mere half hour, life changing spinal bleed, which has changed my life forever, opened different doors, and made me so aware of just how fragile life is !! Be thankful for what you have, be it good, be it bad, be it what you think is a major problem - just embrace, accept and conquer life's cards dealt to you.
And back to the present !!. Every SCI has a different outcome as to the gaining of mobility and recovery - some far more gainful, some less, and some, heartbreakingly non existent. One of the predominant aspects of this condition so evident during rehab was the sexual function after injury. Dependent on ones level of injury, determines the function of what boils down to basics of life - Sex !, love-making,... Call it what you want ! During rehab, " they " offer clinics, viagra, cialis, sexual aid advice etc etc etc, WELL.... I had my first sexual experience, in public just the other day..... And it goes like this......
With a one day cover of a double up carer, a tiny Philipino girl, Gracie, we decide to troll the high streets of second hand furniture, charity shops and bargains on offer. I get bored with the one shop and opt to go out for a cigg whilst she finishes up inside. I'm outside, minding my own business, getting my cigs and lighter out, lighting up ( and unbeknown to me Gracie has come out and is behind me ). Up walks a rather scruffy elderly lady with bleach blond greasy hair, smiles at me, lifts my bag on my lap and proceeds to grab my privates and says " ya want some of this ?, I give you squeeze and pleasure ! " I'm lost for words, slap her hand away, she giggles, repeats the ball and claw groping of my privates, and says " I just want a cigg, luv ". I give her a cigg on the condition she goes away. Gracie then asks me if she is a friend of mine. NO, I answer, and Gracie says..... " But shi grabba jor coki !! "
Shi notta loud to tucha jor coki, I tell her to fuka orf !!! ". So, friends, there is hope !, I had my first sexual encounter with a chav, aging bag-lady on the high street !!!
Then, a couple of Sunday's ago, Meezie and I head out to the Shorditch antique / boot market. We have a private system going where we decide what we want, he goes back and offers a low bid, gets rejected, then I go back and offer a little more. Sometimes we are lucky, sometimes not, but it's fun all the same !! And we have a good laugh. So whilst he's gone I'm sitting on the pavement and a dodgy, rasta man sidles up to me and asks if I smoke gunga, or need pills, or snow ( coke ). I mean...., the only cripple within a 10 mile radius and this geyser hits on me !!! I look up at him and say " yes, how much do you need ? "....... He looks at me, gob smacked ! And then I say " listern, MATE, I'm an undercover cop, and we are doing a surveillance reiki here ". You could almost see him turn white !!! Gone, faded into the crowd like dust !!
Finally, after two months of carer shuffling, negotiations with care company and my recruiting of PA's, this week has begun with, hopefully our awesome foursome team. Mishki and Martini alternating as live In's - both Czech, martini recruited from my ski trip, both competent, respectful of all needs and running on a two week on / off basis allowing them to go back to Czech Republic on their off period. Diana, also recruited from my Sweden trip has started as my Monday to Friday double up. OT and Physio trained and a gem to have on board - willing, able and totally competent with all needed for my daily care and wellbeing !!! Will post pics of us all soon.
Having entered into my third year since my injury, and learned so much along this journey, I remain positive in making a difference with seeing the world from a different perspective. Always be appreciative of what you have, be it small or large, let go of the small stuff, and tell the ones you love !! - Life is fragile and unpredictable.
Posted with love and ongoing good health wishes !!!
G.
Tuesday, 29 March 2016
Bringing back the Normality !!!
It's always a challenge maintaining a smooth easy ride as a tetra and the gang. The gang are probably the most important factor of my life in ensuring an easiest possible lifestyle with the everyday living that I deal with. It's not easy having to manage four people and their various attributes that maintain a free flowing cog on the gearbox system of making my life as pleasurable as possible ! I am so lucky to have been awarded one of the highest level of care package, whereby I have a 24/7 live in as well as a daily double up to help - enabling me freedom of independence. Forever greatful, but you gotta understand that having these people around you all the time can be somewhat frustrating !! I long for, and do create the odd opportunity to just spend half an hour on my own, devoid of constant monitoring, bag checking, blood pressure monitoring etc etc etc - Again, just saying, not complaining .
So after my last blog about the resignations, moving on's, etc etc...... I was gutted to lose the stalwart , Eugene ! Very sad to see Andrea going forward to better his CV, but knowing full well that I could manage the process !. Suddenly the dark cloud of millitantness evoporated, the atmosphere changed at no 9. The PA's all smiling and happy, the air cleared and I realised that all things are for a reason, again, and often one is to self absorbed to see the woods for the trees !!! As much as I was devestated to see Eugene leave, I was freed of the hidden demons that he so controlled over the space and people who look after me. Thank you universe for releasing me of that !
So with what was a " stand in " carer, Michal, pronounced as Mishcal, and to begin with wouldn't have lasted a week, began a bond of care and a humerous nurturing I would not have believed initially. He is a total tree huger, loves to venture off on his off time to forests around the world and hike. Canada, Nepal, Asia, you name it....... He has been, done and looking for the next " out back " to explore ! Eugene having upped and left with basically no notice, saw Mishcal thrown into the deep end, but coped remarkably well !! He is Czeck - looking for an assignment of two weeks on and twoweeks off - not an easy ask !
I in the meantime had spoken to one of the carers that was on my skiing trip, who was interested in the same shift arrangement , and happened to be Czech as well. NIKE, came to mind ! Make it happen. I did, and Martin joins the gang as of next week - all sorted, relaxed and I couldn't be happier !!! Martin, now affectionately known as Martini !!
Mishcal accidentally mentioned that in his language, Mischki meant " small mouse " a term of endearment only his parents would use !! Big mistake!!! He is nearly 7ft tall, and known only as Mischki now !!. He has a fantastic sence of humour, and the other morning whilst doing my FES , and waiting for Gravity to release me of some " extra weight ", nothing was happening. As he was replacing the electronic pads, I said to him " Mischki, I think it's gonna have to be your Gold finger " that gets things going !! And I told him about Shirley Bassey's song and the 007 movie.
Blow me down if he doesn't google it on you tube, and now we have SB serenading us in the completion of bowel care !!!! I kid you not ! All of us now know the lyrics and it works !!!!
So with the two live in's now in place, Andrea leaving, there was only one slot to fill - a Mon - Fri double up. Without going into too much detai at the moment, and going against all my previous desires, I recruited a girl to replace Andrea. She is funky, new wave, on the ball and someone I so look forward to joining our team !!! She will start in May ! Be my left and right hand side and will bring a sence of stability to the team. Until such time as her present employer knows of her intentions to leave, and respecting that, suffice to say....... I'm all sorted and will post pics of the new gang shortly.
Good Ol' Meezie, my Saturday and Sunday double up, can't keep up with the pace !! He drove us in Diana to the countryside to visit Stu and ML, who have relocated to the uk. If he is not trolling me around Trafalgar Square , leister Square, China town or Soho, he is commissioned to get us wherever that weekend demands ! Thankfully, he ain't going anywhere, and one of my intentions is to get to SA this year as part of my bucket list - he would be my first choice to accompany me as he is the best " rule breaker " and willing to put up with my fight to find these legs again.
I have been asked by a number of people now, about my life prior to injury and post injury, about my upbringing, schooling, siblings, etc etc etc. perhaps a subject that I have ( for the meantime ) blotted out of my mind. But, it's definitely needs to be addressed in my going forward with ongoing recovery !! Yes, there is perhaps a lot of hidden baggage, yes I come from a large family and YES, I am the only one in a wheelchair in my family.
But, the understanding and acceptance has been overwhelming ! You gotta understand that ones lot is dealt, play your cards and be accepting of your fate !! Hard ! Hard ! Hard ! But easily achieved !!! So, my next blog will incorporate my life from 0 - 50, abled bodied, care free existence and having the world at one's fingertips !! Then a small hiccup of having that taken away from you and realising just how fortunate one is with life itself !!! Some make it, some fake it, and many, many don't make it !!!
This blog is dedicated to Jannie - RIP - sad news, but at peace.
Sent to you all with love and ongoing good health wishes !!! Keep trying, keep fighting for your aspirations and keep smiling !!!
G. Xx
So after my last blog about the resignations, moving on's, etc etc...... I was gutted to lose the stalwart , Eugene ! Very sad to see Andrea going forward to better his CV, but knowing full well that I could manage the process !. Suddenly the dark cloud of millitantness evoporated, the atmosphere changed at no 9. The PA's all smiling and happy, the air cleared and I realised that all things are for a reason, again, and often one is to self absorbed to see the woods for the trees !!! As much as I was devestated to see Eugene leave, I was freed of the hidden demons that he so controlled over the space and people who look after me. Thank you universe for releasing me of that !
So with what was a " stand in " carer, Michal, pronounced as Mishcal, and to begin with wouldn't have lasted a week, began a bond of care and a humerous nurturing I would not have believed initially. He is a total tree huger, loves to venture off on his off time to forests around the world and hike. Canada, Nepal, Asia, you name it....... He has been, done and looking for the next " out back " to explore ! Eugene having upped and left with basically no notice, saw Mishcal thrown into the deep end, but coped remarkably well !! He is Czeck - looking for an assignment of two weeks on and twoweeks off - not an easy ask !
I in the meantime had spoken to one of the carers that was on my skiing trip, who was interested in the same shift arrangement , and happened to be Czech as well. NIKE, came to mind ! Make it happen. I did, and Martin joins the gang as of next week - all sorted, relaxed and I couldn't be happier !!! Martin, now affectionately known as Martini !!
Mishcal accidentally mentioned that in his language, Mischki meant " small mouse " a term of endearment only his parents would use !! Big mistake!!! He is nearly 7ft tall, and known only as Mischki now !!. He has a fantastic sence of humour, and the other morning whilst doing my FES , and waiting for Gravity to release me of some " extra weight ", nothing was happening. As he was replacing the electronic pads, I said to him " Mischki, I think it's gonna have to be your Gold finger " that gets things going !! And I told him about Shirley Bassey's song and the 007 movie.
Blow me down if he doesn't google it on you tube, and now we have SB serenading us in the completion of bowel care !!!! I kid you not ! All of us now know the lyrics and it works !!!!
So with the two live in's now in place, Andrea leaving, there was only one slot to fill - a Mon - Fri double up. Without going into too much detai at the moment, and going against all my previous desires, I recruited a girl to replace Andrea. She is funky, new wave, on the ball and someone I so look forward to joining our team !!! She will start in May ! Be my left and right hand side and will bring a sence of stability to the team. Until such time as her present employer knows of her intentions to leave, and respecting that, suffice to say....... I'm all sorted and will post pics of the new gang shortly.
Good Ol' Meezie, my Saturday and Sunday double up, can't keep up with the pace !! He drove us in Diana to the countryside to visit Stu and ML, who have relocated to the uk. If he is not trolling me around Trafalgar Square , leister Square, China town or Soho, he is commissioned to get us wherever that weekend demands ! Thankfully, he ain't going anywhere, and one of my intentions is to get to SA this year as part of my bucket list - he would be my first choice to accompany me as he is the best " rule breaker " and willing to put up with my fight to find these legs again.
I have been asked by a number of people now, about my life prior to injury and post injury, about my upbringing, schooling, siblings, etc etc etc. perhaps a subject that I have ( for the meantime ) blotted out of my mind. But, it's definitely needs to be addressed in my going forward with ongoing recovery !! Yes, there is perhaps a lot of hidden baggage, yes I come from a large family and YES, I am the only one in a wheelchair in my family.
But, the understanding and acceptance has been overwhelming ! You gotta understand that ones lot is dealt, play your cards and be accepting of your fate !! Hard ! Hard ! Hard ! But easily achieved !!! So, my next blog will incorporate my life from 0 - 50, abled bodied, care free existence and having the world at one's fingertips !! Then a small hiccup of having that taken away from you and realising just how fortunate one is with life itself !!! Some make it, some fake it, and many, many don't make it !!!
This blog is dedicated to Jannie - RIP - sad news, but at peace.
Sent to you all with love and ongoing good health wishes !!! Keep trying, keep fighting for your aspirations and keep smiling !!!
G. Xx
Sunday, 20 March 2016
The " Tunnel " of Gloom !!!
It's not often I post two blogs so close together......... But, since the last somewhat boring one, I remembered a few things I should have included. I don't make notes, sit and think, or plan any of my blogs, I simply get the urge to share and start my " one " finger typing and let whatever comes out. In doing so, I do, afterwards sometimes think to myself..... Oh, shyte, I forgot this or that !!!.
For the best part of winter, I have the most dismal view from my apartment !! Bare trees, age old face brick arches housing warehouse depot's with trucks collecting goods 24/7 to supply Londons inner city with goods. I have endured two winters here now, witnessing the amazing autumn leaf colour changes of the two trees blocking out the railway line and collection depot. As well as the two gay robins trying desperately to set up nest with their adopted chick from the bird sperm bank - still situated under the arches. The amazing budding of the trees as they ease their way into spring with all promise of securing me with a green belt for late spring and summer !!. Funny though, over time, I have gotten to appreciate and quite like the starkness and austerity of my winter view - after all, I am living in the city, so what did I expect....... Sherwood Forest ????. I am happy enough to have the trees, in or out of leaf, see the birds, squirrels and the ever present pigeons. Life ain't bad at all.
So Rameez and I are having a puff on the balcony the other day, listening to the Chavy banter waffling up from the back road of the apartment. A constant hearing of " In'it, Bruv, F@@k ya,..........." We decide to explore that part of the hood ! Means crossing through the purple tunnel to see what's going down that end. We do so, and realise that beyond the purple tunnel lies an area of the hood cram packed with Chavy council estates - the constant " foul language, pull along suitcases, drunken spouses leaving home etc etc etc now makes sense !!! The " ya slept wiff me systa, mother, daughter..... Whatever ! Now makes even more sense !!! And we now crank up the horn/ speaker and hurry them along by shouting obscenities back. They of course cannot see us, but certainly hear us !! The tunnel has now been named " The Tunnel of Gloom " - once you pass through it....... There is only shyte to come !! Gotta love the east end !!!
Also mentioned in past blogs, is the infamous Columbia Road flower market held every Sunday. One of the oldest markets of London, where vendors ply their flowers, and street shops and cafes open to quench a persons wee thirst as well as maybe hunger pains !! It is always teaming with people - now mostly tourists, trying desperately to video the small cobbled street filled with fresh flowers - no hassle to us, we there for the late bargains, atmosphere, and the sheer joy of being able to part the crowd with the horn !! It works...... Trust me. Of course, not without altercation. We drove there, only to find the disabled bays all filled up, unyet not a chair user in sight. Not that that's too much of an issue, coz one can have a Blue Badge even if you are not a chair user. But when two people exit a cafe, clearly not disabled, having had loads to drink,and then get into the car and drive off - that " pisses " on my battery !!! More policing needed - I'm on it !!
As the new week begins, remember .... Love, Light and Laughter ! Ongoing good health wishes to you all !!
G. Xxxxxx
For the best part of winter, I have the most dismal view from my apartment !! Bare trees, age old face brick arches housing warehouse depot's with trucks collecting goods 24/7 to supply Londons inner city with goods. I have endured two winters here now, witnessing the amazing autumn leaf colour changes of the two trees blocking out the railway line and collection depot. As well as the two gay robins trying desperately to set up nest with their adopted chick from the bird sperm bank - still situated under the arches. The amazing budding of the trees as they ease their way into spring with all promise of securing me with a green belt for late spring and summer !!. Funny though, over time, I have gotten to appreciate and quite like the starkness and austerity of my winter view - after all, I am living in the city, so what did I expect....... Sherwood Forest ????. I am happy enough to have the trees, in or out of leaf, see the birds, squirrels and the ever present pigeons. Life ain't bad at all.
So Rameez and I are having a puff on the balcony the other day, listening to the Chavy banter waffling up from the back road of the apartment. A constant hearing of " In'it, Bruv, F@@k ya,..........." We decide to explore that part of the hood ! Means crossing through the purple tunnel to see what's going down that end. We do so, and realise that beyond the purple tunnel lies an area of the hood cram packed with Chavy council estates - the constant " foul language, pull along suitcases, drunken spouses leaving home etc etc etc now makes sense !!! The " ya slept wiff me systa, mother, daughter..... Whatever ! Now makes even more sense !!! And we now crank up the horn/ speaker and hurry them along by shouting obscenities back. They of course cannot see us, but certainly hear us !! The tunnel has now been named " The Tunnel of Gloom " - once you pass through it....... There is only shyte to come !! Gotta love the east end !!!
Also mentioned in past blogs, is the infamous Columbia Road flower market held every Sunday. One of the oldest markets of London, where vendors ply their flowers, and street shops and cafes open to quench a persons wee thirst as well as maybe hunger pains !! It is always teaming with people - now mostly tourists, trying desperately to video the small cobbled street filled with fresh flowers - no hassle to us, we there for the late bargains, atmosphere, and the sheer joy of being able to part the crowd with the horn !! It works...... Trust me. Of course, not without altercation. We drove there, only to find the disabled bays all filled up, unyet not a chair user in sight. Not that that's too much of an issue, coz one can have a Blue Badge even if you are not a chair user. But when two people exit a cafe, clearly not disabled, having had loads to drink,and then get into the car and drive off - that " pisses " on my battery !!! More policing needed - I'm on it !!
As the new week begins, remember .... Love, Light and Laughter ! Ongoing good health wishes to you all !!
G. Xxxxxx
Friday, 18 March 2016
PA's, Patience and ongoing inspiration !!!
So the new year kicks in, skiing course completed and a new aspiration is needed to fuel the passion to make life as exciting as it can be !! I am amazed and astounded as I could be, and rarely knock the system, but as SCI with benefits, one would assume that given the stats, the " system " would encourage people to get back into mainstream employment ! Sadly, I cannot support the current " system ". Yes one might get the benefits of Housing and council tax sorted, but under this law, then one is not allowed to work ( income related ) for more than 16 hours a week without losing all benefits !! Nobody voices this, the truth being, that if you are lucky enough to be on the highest rung of the disability grant you will then receive a monthly grant of £557, plus if you qualify " income support " allowance of more or less the same - sorry followers I cannot and will not be destined to a life of sitting in front of the tv, eating Pringles and knowing I have £1000 to survive on per month .
Few people know about the intracies of running a home in order to keep it up to the standards one should, and lots of people would agree that that money is enough to live on, etc etc etc - forgetting energy costs, water bills etc etc..... Load of shyte ! - and I won't get political in my blog. But certain MP's are routing for a reduction in benefits !!!! Let us work, let us gain independence etc etc and don't pull the carpet from undernieth us !! Ok, bitch session over !!!.
As you all know the skiing was an amazing experience !! And we have already organised a reunion for April !! As many of us that can, will travel to London for hopefully a fun filled day of eating, drinking and a bit of sight seeing thrown in !! No doubt about it, we will have fun, reminisce of the wonderful time had in Sweden, and create havoc on the streets with us rollers and strollers !!! My horn will be fully charged and ready for the crowds......... Will keep you posted !
As mentioned in my last blog, I arrived back to a PA abandonment , and a situation of having to source new PA's for various reasons !!! I have been lucky enough to secure Martin as the second live in carer / PA, who was on our course in Sweden, and am so pleased to have him on board - two weekly turn around shifts with my ' cave man ' current live in PA.Both from Czech Republic, and they will fly in and out of the U.K., to do their shifts !!! Amazing how things work out - I was totally overwhelmed by the situation , stopped worrying, gave it out to The universe and whoooola, it's all worked out.
Health wise , I seem to have plateaued at the moment - but continue to go my excersize's, standing frame and FES regime every morning in the ever hopeful manner of trying to find my legs again ! This...... Seems to be a long long journey, but, it's a journey that has taught me more outa life than I could ever have expected ! The friendship's, the patience, and the ongoing will to make the body work again !!!! Stick in a chair for life... Does not work for me. Be that as it may, one needs to accept ones deck played, and play ones hand accordingly. Finding my legs again, against all the doctors advice is a challenge I bring upon myself - it can and will be done. In time.
With the renewed attitude to 2016, that anything is possible, I have volunteered to give up some time to do some charity work, in the hopes of furthering the awareness of SCI - waiting to hear if my applications are accepted. Perhaps, I'm a little too outspoker about my condition and what people need to know, but, I cannot change that, as much as I've tried. Real is real !!! And the way I see it, is not to pussy foot around the realities, but rather " tell it like it is " - I'm WAY to out there for these " ticking " of the boxes kinda people !! I'll keep at it though !!!!
Not a terribly informative blog, but one just to let you know that I'm still here, still Breaking the rules and moving forward with my ongoing quest !! Remember to be appreciative of what we have, tell people you love, and build all bridges !! Posted with love and ongoing good health wishes !
G
Few people know about the intracies of running a home in order to keep it up to the standards one should, and lots of people would agree that that money is enough to live on, etc etc etc - forgetting energy costs, water bills etc etc..... Load of shyte ! - and I won't get political in my blog. But certain MP's are routing for a reduction in benefits !!!! Let us work, let us gain independence etc etc and don't pull the carpet from undernieth us !! Ok, bitch session over !!!.
As you all know the skiing was an amazing experience !! And we have already organised a reunion for April !! As many of us that can, will travel to London for hopefully a fun filled day of eating, drinking and a bit of sight seeing thrown in !! No doubt about it, we will have fun, reminisce of the wonderful time had in Sweden, and create havoc on the streets with us rollers and strollers !!! My horn will be fully charged and ready for the crowds......... Will keep you posted !
As mentioned in my last blog, I arrived back to a PA abandonment , and a situation of having to source new PA's for various reasons !!! I have been lucky enough to secure Martin as the second live in carer / PA, who was on our course in Sweden, and am so pleased to have him on board - two weekly turn around shifts with my ' cave man ' current live in PA.Both from Czech Republic, and they will fly in and out of the U.K., to do their shifts !!! Amazing how things work out - I was totally overwhelmed by the situation , stopped worrying, gave it out to The universe and whoooola, it's all worked out.
Health wise , I seem to have plateaued at the moment - but continue to go my excersize's, standing frame and FES regime every morning in the ever hopeful manner of trying to find my legs again ! This...... Seems to be a long long journey, but, it's a journey that has taught me more outa life than I could ever have expected ! The friendship's, the patience, and the ongoing will to make the body work again !!!! Stick in a chair for life... Does not work for me. Be that as it may, one needs to accept ones deck played, and play ones hand accordingly. Finding my legs again, against all the doctors advice is a challenge I bring upon myself - it can and will be done. In time.
With the renewed attitude to 2016, that anything is possible, I have volunteered to give up some time to do some charity work, in the hopes of furthering the awareness of SCI - waiting to hear if my applications are accepted. Perhaps, I'm a little too outspoker about my condition and what people need to know, but, I cannot change that, as much as I've tried. Real is real !!! And the way I see it, is not to pussy foot around the realities, but rather " tell it like it is " - I'm WAY to out there for these " ticking " of the boxes kinda people !! I'll keep at it though !!!!
Not a terribly informative blog, but one just to let you know that I'm still here, still Breaking the rules and moving forward with my ongoing quest !! Remember to be appreciative of what we have, tell people you love, and build all bridges !! Posted with love and ongoing good health wishes !
G
Tuesday, 9 February 2016
Balls to the Wall - 2016 Here I Come !!!!
So we are already one month and a few weeks into the new year, and I have accomplished two of my ' bucket list 'wishes !!! Seen the Northern Lights, and skied Sweden ! - will get to that later. With eleven months to go and lots to accomplish, let's grab 2016 with a vengeance !!
With the festivities over now, and everyone seemingly back into the swing of usual everyday life again, I have had little time to sit back and ponder the year ahead - or what's left of it. Before we know it, we will be arranging our next ' year end 'activities !! As we age, the years seem to pass faster. The monthly bills roll in quicker, the trains and busses take longer to arrive and the days get shorter !!! Oh for youth again !
Just as I thought the gang were all happy and things were running smoothly, I returned from Sweden to a situation least expected. I had been contemplating taking over my care package to run myself, employ the carers myself and generally take more control - part of gaining more independence in 2016. This would by-pass having to be dictated to by the care company. In so doing, the PA's would not be compromised in any way apart from earning perhaps a little more money. Having spoken to all of them individually about my " consideration ", at face value, all agreed in principle. One step further, I thought !!! Until I received A call from the care company to dissuade me of taking it on myself...... Obviously, they don't want to lose me as a client as they are handsomely compensated by the government to run my package ! One of the gang has contacted them and expressed concern of my intention. Double whammy, Eugene, who has been with me from date of discharge, has requested to be removed from my Rosta with immediate effect, and Andrea my weekday double up announces that his intentions are to further his career and he is looking at alternate paths, so his time with me is limited ! So here I sit - two carers down, slightly stressed, but accepting of the fact that perhaps " new brooms DO sweep clean ". I'm on it, have certain plans in place and will not allow my recovery process to be altered by this. This week will tell which route I take.
I was fortunate enough to have been selected to attend the Ski Sweden course with the Back Up Charity. A privilege and experience I will never forget !. For the first time since my injury, I was to travel. The logistics of which I won't bore you suffice to say it's not a " pack your overnight bag " and go !!!! Those days are gone ! Long gone !!! What I had been so looking forward to was suddenly upon me. Rameez was to drive me in ' Diana ' to the hotel where we were staying near Heathrow for the first night prior to our early departure the next morning. Of course, I was the last to arrive as we took a few wrong turnings en route. I was met in the foyer by a slightly agitated group leader, Mike. Ushered to my room to drop off my luggage, and told to get to the conference room ASAP for orientation and briefing with the rest of the team. Wheeling into a room of sixteen complete strangers, five of us in chairs and the balance, support team - was very daunting ! What was I doing here ? What was I thinking when I applied ? I just want to go home !! ......... How wrong I was !! How totally wrong I was !! An experience and confidence building course that one cannot explain ! Back Up you rock !!!!
In order to set the scene, I need to explain the scenario. There were two team leaders, Michael and Dave ( these two guys were responsible for holding and running the course together ). Then the Buddies, Leon, Andreea and Cathy - volunteers Who would be assigned to us to share our rooms, wake us up, pack our day packs etc etc. Then comes the participants .... Myself, Pat, Shaun, Tyrone and Paul - all manual chair users except myself in the 4 X 4. Plus an invaluable Care team of Leila, Sharon, Diana, Wanda, Martin and Cathrine - who's function was our clinical care for the week.
So the team is thrown together and the orientation begins - briefing, aims of the course, some role playing games, do's & dont's by Dave and Mike ! And the allocation of carer and buddy ! I was assigned Leila as my carer and Leon as
my buddy. Lovely, ditsy, smiley, Leila with funky head bands and purple streaks in her hair - I immediately like her - her sence of humour, outgoing personality and dedication to the course admirable. Leon, oh Leon.... Oh Leon, I think we knew from the start that we would get on. A volunteer, with a friendly aura, " let's just do it " attitude, and willingness to help me in every way. Seven nights of my snoring and he was still cheerful !! Our room looked like a tip, but we found what we needed every morning, and he looked after me on and off the slopes and especially in the bar at night !!!! Somehow, I get the feeling that the week ahead is only going to get better.
We have diner, all still grasping at straws and trying to break barriers to get to know one another - Well most barriers dropped afterwards in the Pub.......... Need I say more. Dave and Mike had a challenge ahead to keep this bunch in order, to coordinate the fairly strict timetable for the next week. Both of whom did a tremendous job in doing so and both of whom were a pleasure to be with !! Andreea, who came out of her she'll remarkably, took control of the late comers breakfasts by making sandwiches for the bus ride up to the ski lifts , aided by Cathy and Leon taking control of getting everyone into the bus ! Remarkable job !!
Pat, with her beautiful dry sence of humour, Paul, who constantly got in my way, and his mellow attitude to everything, Ty, who became one of the smokes, along with Shaun who also joined us outside in sub zero temps to puff. I started a sayin when we arrived in Sweden that I was going to see if the Royal Mail had delivered my parcel !! That was the cue for going out for a smoke. Some of the team initially asked what parcel I was waiting for ? I told them they were ' fliers ' I was waiting for to recruit Swedish ladies for my " rent by the hour " second bedroom back home. I might have been a little to wild for the team, but we all lost our personal shields, and we're now new best friends for the week !!
Sharon, in all her pink glory, Martin and his organisational skills, wicked sence of humour, Cathrine and her ability to get more ski jackets donned Whilst we hovered around the hotel foyer waiting for the bus. Then the darling......... " Winter Wonderland - Wanda " who had funny ski hats for all occasions ! Also a volunteer and spent all her time on the slopes filming our antics ! Wonderful, warm hearted lady with so much to give !! And, lastly our " chatty " Diaaaaana !! Constantly working the team to get ready, sorting water bottles, meds, leg bags etc etc etc...... " even if it wasn't her job !!! ".
SO LETS GO SKIING !!! Hats of to the amazing handling of the disabled by SAS - Swedish airline. Their respect, handling and ability to load and off load five cripples on one flight was awesome ! The friendly ground staff at arrivals, and the equally obliging coach driver to negotiate the roads up the mountains to our hotel. The modern technology of the vehicles, having lift access etc etc etc............. An example of which many countries should follow. Arrival at hotel, with friendly, welcoming staff, eager to please ! Amazing room, with wet room facilities, larger than life lifts, and chair access to anywhere in the hotel, guys, spa, bowling alley, function rooms,.... You name it. Diner is served, Jerusalem artichoke soup, followed by steak, salad and veg. Scrumptious, albeit that the Swedish chefs like salt ! The food for the rest of our stay was first class, and beautifully presented ! Room allocation, briefing for agenda in the morning and then free time. Funny how we all found one another in the bar upstairs at free time !!!! It got to a stage where we didn't have to order, roll in and barman simply said ' bottle or glass of Sauvignon ".....
First morning out and into our bus to do the 10 minute ride to the ski school - an unbelievable bunch of dedicated instructors who have opted to run the disabled skiing school. Friendly, helpful, fun loving and eager to get the most out of the slopes for you. I was assigned to " Awesome " A local girl who knew the mountains like the back of her hand ( like I'm sure all of them did ). If you've seen my pics on FB, you will see the carts we were hoisted into. From the onset, I said to Awesome that it's easier to ask for forgiveness than it is to ask for petition !!! So let's break the rules !! She AGREED !! And rules we broke ! I will be posting a video of some of my runs - just need to condense the file and edit the profanity :-).
The nightly snow falls were kind to us, the temps never less than -10* odd, some sunny days and some overcast days. The unbelievably beautiful landscape, covered in pristine snow. The morning sunrise, and we were already on the mountains ! The frozen river way below us meandering through the small quaint town where we were based. The amazing comradery built up over a few days together with the humorous bantering amoungst ourselves. The sharing between ourselves about personal matters not easy to share with people notin the same position, from sexual function, to bowel care sharing, bladder management, skin issues, hoisting tips and dressing tips to name but a few........ I for one learned more than any doctor,nurse or psychologist could tell me - thank you guys for sharing !!!
All of the above said, I cannot express the sheer exhilaration of hurtling down the mountain side, half in control with no noise apart fron the air rushing and swooshing of snow ! The chilled wind on your cheeks !. Where disability does not enter your mind - it's you and the elements, no self conscious feelings, just an adrenaline rush between you and your brain - no outside influences, freedom, freedom, freedom !!
Again, I have to thank The Back Up Charity for affording me the privilege of this course, which was a confidence booster, and making me realise that anything is achievable within reason. Travel takes a little more planning, but is totally doable. And whatever level of injury you are, there are activities to explore and just get out there and do them.
So my friends as you will ascertain from the above I have topped up my " let's get out there " attitude. Once again my renewed vigour to conquer and challenge the limits of the adversities of spinal cord injury ! It can be done, I have just experienced it first hand ! There is life after SCI, we just have to have the guts and determination to follow through and find it. I have made myself a " bucket list " of things to conquer, with no time parameters apart from to look, find, and take the challenge. Always remember, you can travel around the world and see nothing, but you can walk around the block and see everything !!!!
As always, in my quest to finding my legs again, I post this with love and ongoing good health wishes !
G.
With the festivities over now, and everyone seemingly back into the swing of usual everyday life again, I have had little time to sit back and ponder the year ahead - or what's left of it. Before we know it, we will be arranging our next ' year end 'activities !! As we age, the years seem to pass faster. The monthly bills roll in quicker, the trains and busses take longer to arrive and the days get shorter !!! Oh for youth again !
Just as I thought the gang were all happy and things were running smoothly, I returned from Sweden to a situation least expected. I had been contemplating taking over my care package to run myself, employ the carers myself and generally take more control - part of gaining more independence in 2016. This would by-pass having to be dictated to by the care company. In so doing, the PA's would not be compromised in any way apart from earning perhaps a little more money. Having spoken to all of them individually about my " consideration ", at face value, all agreed in principle. One step further, I thought !!! Until I received A call from the care company to dissuade me of taking it on myself...... Obviously, they don't want to lose me as a client as they are handsomely compensated by the government to run my package ! One of the gang has contacted them and expressed concern of my intention. Double whammy, Eugene, who has been with me from date of discharge, has requested to be removed from my Rosta with immediate effect, and Andrea my weekday double up announces that his intentions are to further his career and he is looking at alternate paths, so his time with me is limited ! So here I sit - two carers down, slightly stressed, but accepting of the fact that perhaps " new brooms DO sweep clean ". I'm on it, have certain plans in place and will not allow my recovery process to be altered by this. This week will tell which route I take.
I was fortunate enough to have been selected to attend the Ski Sweden course with the Back Up Charity. A privilege and experience I will never forget !. For the first time since my injury, I was to travel. The logistics of which I won't bore you suffice to say it's not a " pack your overnight bag " and go !!!! Those days are gone ! Long gone !!! What I had been so looking forward to was suddenly upon me. Rameez was to drive me in ' Diana ' to the hotel where we were staying near Heathrow for the first night prior to our early departure the next morning. Of course, I was the last to arrive as we took a few wrong turnings en route. I was met in the foyer by a slightly agitated group leader, Mike. Ushered to my room to drop off my luggage, and told to get to the conference room ASAP for orientation and briefing with the rest of the team. Wheeling into a room of sixteen complete strangers, five of us in chairs and the balance, support team - was very daunting ! What was I doing here ? What was I thinking when I applied ? I just want to go home !! ......... How wrong I was !! How totally wrong I was !! An experience and confidence building course that one cannot explain ! Back Up you rock !!!!
In order to set the scene, I need to explain the scenario. There were two team leaders, Michael and Dave ( these two guys were responsible for holding and running the course together ). Then the Buddies, Leon, Andreea and Cathy - volunteers Who would be assigned to us to share our rooms, wake us up, pack our day packs etc etc. Then comes the participants .... Myself, Pat, Shaun, Tyrone and Paul - all manual chair users except myself in the 4 X 4. Plus an invaluable Care team of Leila, Sharon, Diana, Wanda, Martin and Cathrine - who's function was our clinical care for the week.
So the team is thrown together and the orientation begins - briefing, aims of the course, some role playing games, do's & dont's by Dave and Mike ! And the allocation of carer and buddy ! I was assigned Leila as my carer and Leon as
my buddy. Lovely, ditsy, smiley, Leila with funky head bands and purple streaks in her hair - I immediately like her - her sence of humour, outgoing personality and dedication to the course admirable. Leon, oh Leon.... Oh Leon, I think we knew from the start that we would get on. A volunteer, with a friendly aura, " let's just do it " attitude, and willingness to help me in every way. Seven nights of my snoring and he was still cheerful !! Our room looked like a tip, but we found what we needed every morning, and he looked after me on and off the slopes and especially in the bar at night !!!! Somehow, I get the feeling that the week ahead is only going to get better.
We have diner, all still grasping at straws and trying to break barriers to get to know one another - Well most barriers dropped afterwards in the Pub.......... Need I say more. Dave and Mike had a challenge ahead to keep this bunch in order, to coordinate the fairly strict timetable for the next week. Both of whom did a tremendous job in doing so and both of whom were a pleasure to be with !! Andreea, who came out of her she'll remarkably, took control of the late comers breakfasts by making sandwiches for the bus ride up to the ski lifts , aided by Cathy and Leon taking control of getting everyone into the bus ! Remarkable job !!
Pat, with her beautiful dry sence of humour, Paul, who constantly got in my way, and his mellow attitude to everything, Ty, who became one of the smokes, along with Shaun who also joined us outside in sub zero temps to puff. I started a sayin when we arrived in Sweden that I was going to see if the Royal Mail had delivered my parcel !! That was the cue for going out for a smoke. Some of the team initially asked what parcel I was waiting for ? I told them they were ' fliers ' I was waiting for to recruit Swedish ladies for my " rent by the hour " second bedroom back home. I might have been a little to wild for the team, but we all lost our personal shields, and we're now new best friends for the week !!
Sharon, in all her pink glory, Martin and his organisational skills, wicked sence of humour, Cathrine and her ability to get more ski jackets donned Whilst we hovered around the hotel foyer waiting for the bus. Then the darling......... " Winter Wonderland - Wanda " who had funny ski hats for all occasions ! Also a volunteer and spent all her time on the slopes filming our antics ! Wonderful, warm hearted lady with so much to give !! And, lastly our " chatty " Diaaaaana !! Constantly working the team to get ready, sorting water bottles, meds, leg bags etc etc etc...... " even if it wasn't her job !!! ".
SO LETS GO SKIING !!! Hats of to the amazing handling of the disabled by SAS - Swedish airline. Their respect, handling and ability to load and off load five cripples on one flight was awesome ! The friendly ground staff at arrivals, and the equally obliging coach driver to negotiate the roads up the mountains to our hotel. The modern technology of the vehicles, having lift access etc etc etc............. An example of which many countries should follow. Arrival at hotel, with friendly, welcoming staff, eager to please ! Amazing room, with wet room facilities, larger than life lifts, and chair access to anywhere in the hotel, guys, spa, bowling alley, function rooms,.... You name it. Diner is served, Jerusalem artichoke soup, followed by steak, salad and veg. Scrumptious, albeit that the Swedish chefs like salt ! The food for the rest of our stay was first class, and beautifully presented ! Room allocation, briefing for agenda in the morning and then free time. Funny how we all found one another in the bar upstairs at free time !!!! It got to a stage where we didn't have to order, roll in and barman simply said ' bottle or glass of Sauvignon ".....
First morning out and into our bus to do the 10 minute ride to the ski school - an unbelievable bunch of dedicated instructors who have opted to run the disabled skiing school. Friendly, helpful, fun loving and eager to get the most out of the slopes for you. I was assigned to " Awesome " A local girl who knew the mountains like the back of her hand ( like I'm sure all of them did ). If you've seen my pics on FB, you will see the carts we were hoisted into. From the onset, I said to Awesome that it's easier to ask for forgiveness than it is to ask for petition !!! So let's break the rules !! She AGREED !! And rules we broke ! I will be posting a video of some of my runs - just need to condense the file and edit the profanity :-).
The nightly snow falls were kind to us, the temps never less than -10* odd, some sunny days and some overcast days. The unbelievably beautiful landscape, covered in pristine snow. The morning sunrise, and we were already on the mountains ! The frozen river way below us meandering through the small quaint town where we were based. The amazing comradery built up over a few days together with the humorous bantering amoungst ourselves. The sharing between ourselves about personal matters not easy to share with people notin the same position, from sexual function, to bowel care sharing, bladder management, skin issues, hoisting tips and dressing tips to name but a few........ I for one learned more than any doctor,nurse or psychologist could tell me - thank you guys for sharing !!!
All of the above said, I cannot express the sheer exhilaration of hurtling down the mountain side, half in control with no noise apart fron the air rushing and swooshing of snow ! The chilled wind on your cheeks !. Where disability does not enter your mind - it's you and the elements, no self conscious feelings, just an adrenaline rush between you and your brain - no outside influences, freedom, freedom, freedom !!
Again, I have to thank The Back Up Charity for affording me the privilege of this course, which was a confidence booster, and making me realise that anything is achievable within reason. Travel takes a little more planning, but is totally doable. And whatever level of injury you are, there are activities to explore and just get out there and do them.
So my friends as you will ascertain from the above I have topped up my " let's get out there " attitude. Once again my renewed vigour to conquer and challenge the limits of the adversities of spinal cord injury ! It can be done, I have just experienced it first hand ! There is life after SCI, we just have to have the guts and determination to follow through and find it. I have made myself a " bucket list " of things to conquer, with no time parameters apart from to look, find, and take the challenge. Always remember, you can travel around the world and see nothing, but you can walk around the block and see everything !!!!
As always, in my quest to finding my legs again, I post this with love and ongoing good health wishes !
G.
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