Today, that will is stronger than ever before, and it is my intention to prove to other people that independent living with SCI is quite achievable, and that with a " can do " attitude, life is there for the taking !. The slogan of NIKE is so apt " Just do it ".
Having dropped the psychological labelling of carers etc, and now referring to the " gang ", who are all my PA's has had an unbelievable effect on myself as well as all four of the guys that continually surround me. I suppose that it's an ego " thing ". Not withstanding the aforesaid, there have been a few altercations with myself and the gang, but, I have taken control again and made it quite clear that their lives / jobs are pretty easy and quite frankly none of them are irreplaceable !! All dancing on eggshells now and - it's my way, or the highway !!! To quote my good friend Jo's words " don't slam the door on the way out ".
Plastic bags have been banned from No 9, to avoid Eugenes OCD and wrapping everything up, Michal has been instructed to get better with the program !, clean up his act, Andrea to stop expecting early release from his daily duty Rosta and good Ol' Rameez to get here on time for his weekend shifts !! All petty in the greater scheme of things, but it is too easy to get a little lax, and then everything starts to slide into a kind of complacent atmosphere whereby they start to dictate how your life will run - no longer !!!! this is MY life and they are in paid employment to make my life easier for ME. Familiarity breeds content, as we know, so I have toned down on the degree of " friendship " bantering and become more factual and directive in dealing with the gang. Order rather than ask, but with the politeness and respect of " please and thank you ". It is working and gradually the atmosphere is returning to a more respectable level all round.
So, with my ongoing quest to get out of this 4 X 4 and of rebuilding this body with a new attitude, things are running quite smoothly !. As I've mentioned in past blogs, once released from Alcatraz , you got to kinda fend for yourself ! So I have been experimenting with various ways of cutting down regimes that cuts into ones day time. With good advice from my friend Sarah, who has been in a chair for 22 years, and always the help from Alcatraz consultant etc etc, and for want of gaining more independence for myself I have taken more control with managing small but significant day to day things that will seem so easy to people going about their everyday lives.
Not intending to be crude, but sharing the realities of living with SCI, I'm tired of my bowel care being done on the bed first thing in the morning after leg excersises - depending solely on the PA's ability to manually control what stays in, and what comes out ! So we now do the excersizes, hoist into shower chair, and head for the loung area where we do FES at the same time ! Cutting down 30 - 40 minutes of the morning regime !!! Trust me !!, between the electrical impulses and gravity, it works !!! So there I sit like Ceasar, draped in white towels in the balcony doorway, ciggie in one hand, electric pads placed all over the bod on full tilt, sipping coffee and flashing at the trains exiting London Bridge station. The gang think I'm mad, but let me tell you it's the first time in twenty five months that I have been sitting in a normal position to do the daily nessessaries !!! Huge step forward !!!!
It's all too easy having all the help needed, so, again in order to progress with self recovery, I have taken to trying to plug in my iPad, fone, camera charger etc etc myself ! You try it - put one hand behind your back sit in a chair and try plugging your fone in to charge.......... Very, very frustrating !!!! Try putting toothpaste on your toothbrush with one hand, or opening a screw top jar..........Worst of all...... Try flossing your teeth with one hand !!! But I am mastering the art ! Am still spending fifteen minute odd on " writing " practice, and can thankfully report that I can write numbers, albeit slowly, and print write semi- elegiblably, but cursive is a complete shambles - I WILL get there ! Plus, big step of being able to sign my signature......... It's looking more and more like the old days !!
Fog-horn in place, led lights fitted and we still create havoc on the streets !!. Rameez is definitely the most adventurous of the gang ! We have loads of fun scattering the crowds at peak time in the stations.
So Rameez and I head off to the South Bank, to meet friends for a meal. I gather it's cold as everyone has coats and scarves on. It's a clear day and every mother and their pram/buggies is out and about !! Crowds everywhere !!!! By four o'clock, it dark. We take no prisoners........ Nobody moves out of the way, hooter and all, we don't wait in lines for the elevators, we wheel straight to the front and he simply points to the signs indicating that wheelchairs have right of way !!! We go online and buy some hectically blinding flashing led lights which are to be attached to my chair sides.......... And we are ready for the crowds now !!! Nothing, and I mean NOTHING will stop us now !!! It's a bit like a form of robo-cop. at this time of the year I may appear to be a nuked Xmas tree on wheels, but anything to Be visible !!!!!
My newfound love of trolling antique markets, car boot sales and charity shops has become a passion ! Rameez and I make an incredible team. He goes and offers a ridiculous bid, knowing full well it will be declined, and then he leaves and I wheel up and offer a few quid more ! Invariably we get what we are after.
I posted on FB pics of my new adapted vehicle being delivered yesterday ! I just got so tired of having to decline invitations out because of access and transport links. It is most frustrating, although I have to give credit to the underground for trying to upgrade as many of the stations as possible - a long and tedious process !!! I so remember years ago in SA when my loyal old Hyaudi gave up the ghost and my mechanic said " Gav, it would be cheaper to buy a new car than to try and fix this one ". My soulmate, Di, collected me from the garage and drove me to the dealership. We walked in and asked for the salesman who had been the most recently employed. We were introduced to a young guy by the name of Danny ( if I remember correctly ), who was super enthusiastic, rehearsed in his product knowledge and had been in the job for two weeks. I pointed at a little silver Atos and asked him the price - " I'll take it " I said !!! He jumped up and said " let me get the keys and we can go for a test drive ". " No, not interested in driving it, can I see your finance department " which I did, and half an hour later all was approved and Di and I walked out of the showroom with my car being delivered the next morning. I'm sure to this day, Danny must tell that story at many a diner party. AND, to this day the little silver Atos runs like a dream and hasn't given a days trouble !!! Trust in ones gut feeling.
So last week I call up the motobility people, get referred to their web page, spot a little black number, call the agent back, and tell him I " want it ". OK, he says, he will organise a home demo, and test drive. " Not nessesary " I reply, how quickly can you deliver ? Stunned silence !!! Well probably just after new year ! No, then I won't take it - I need it for Xmas ! He pulls out all stops, calls me back an hour later and has approved everything with my motobility scheme and can deliver on 23rd !! I started this blog with saying how I was going to regain more and more independence in my life, going into my third year - and that's what I am doing !!! I cannot express the newfound freedom of being able to finally get to wherever I want to. Another step in the direction of re-gaining as much off a life back as possible. Trust, Believe, Visualise and GO FOR IT !!!!
In closing, I thank you all for following my journey over the past two years and for the amazing encouragement from you all. Share my blog, share my story, and share as much positive energy as possible !! Live, love, laugh and attack all problems with a clear mind ! Everything is achievable if you put your mind to it. All the best wishes to you all over the festive season. As always, sent with love and ongoing good health wishes.
G.
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