Past, Present and Future...... !!!!

For too long prior to my two year anniversary of my injury, I contemplated the time span of recovery ! For weeks leading up to the November date, I felt myself gradually sliding backwards, a hole difficult not to slide in to, a place where absolute uselessness hovers and a place where one cannot express the helplessness of the body out ruling the positive side of the mind. To me, all thoughts of the process of forward progress was gradually grinding to a halt. This new body in the making.....just not getting there !! The why's, the when's ? The how long's..... All the questions started to filter back ! I, after two years expected to be whole again ! I expected to be walking again ! And I expected to be resuming my prior lifestyle !!! I, I, I, I all want and needs ! It was a few weeks of build up that I never suspected ! Demonds lurking in the sub-conscious , hope, self gratification etcetera all bundled into one ! I want to walk ! I want this body to maintain as it did before ! Sadly it ain't happening !! well not fast enough for my liking. But, I have to go with the " lot " being dealt to me and maintain a positive attitude towards my rebuilding of life, and this process called " recovery " !!!!. The dreaded anniversary date arrives and having conditioned my mind, I am wakened by my carer to a sun filled Autumn day, with my mind set in a good positive way !! No hate, no challenge, no morbid thoughts of " why's, when's , if's , buts etc. if anyone is gonna change this...... It has to be me !. I decide that the 7th of November is gonna be a MY day, a day where I can do exactly what is needed for me, and that's exactly what I need to convince myself of just how lucky I actually am. I refuse any morning excersizes, instruct a faster morning regime, shave faster than before, moisturise without cleanser, toner etc, refuse FES electrodes, choose the brightest of my wardrobe, and let the household know that I won't be doing any further Physio or standing frame for the day ! Eye-brows lift, but I don't care - today is My day !! Nothing other than a self indulgent day of no regimented regime. All my life I have lived near water, if not the ocean, a river or a dam. Water to me instills a tranquility of the mind. I wrap up warmly, and instruct a trip to the river - a mere 7 minutes wheel from home. Here on the edge of the Thames, I instruct both carers to leave me alone, to linger behind me at a distance where I can feel they don't belong to me ! At a distance where I am able to feel vulnerable without having any form of support should I need it. Finally, finally I am alone !! The muddy current of the Thames, chilled autumn breeze, nobody hovering around me, total silence in my head and oblivious to the city life sounds all around me. Basically, for the first time in two years I am truely ALONE ! I meditate, I sit and look around me, I pray, I argue with the universe, I try every working muscle ( not many ) to get angry........ But No ! It's not happening ! Now with the sound of the ebbing river, the water taxi's horns, the Fishermans banter etc etc etc, I begin to realise just how far I've come in two years, and just how fortunate I am to have the support I have, how lucky I am to have the adapted apartment I have, how lucky I am to have regained what part of this body I have, how every drop of blood, sweat and tears has paid off !! How fortunate enough I have the option of shopping out carers at will.................. The list goes on and on ........... From a 48hr death sentence, extended by another 48 hrs, induced coma, to waking up a complete mop, head to toe, not able to communicate, no body movement, eyes only, and destined to a life in some care home reliant on people 24/7. Hell NO, what gives me the right to complain ? It's thanks I need to be giving !!!! Here I am, sitting on the rivers edge, alone, with a functional arm, good head and a 4 X 4 to get me around !. What more could a cripple ask for ? The frustrations of everyday living kinda pale into insignificance. I was always one for labels. Clothing, furniture, aftershave etc etc, but now I'm governed by seams, zips, buttons etc, to maintain a healthy skin regime ! How lucky I am to be able to shop ! Womens department for tights or men's departments for sweaters - I now have more options ! I now live alone, assisted of course with 24/7 help, but how lucky I am !!. Getting back to the label thing, I labeled my help as carers, or the Jeeves - No Longer, they will from now on be referred to as the " gang " !. If I lable them as carers, I'm lableing myself as dependent, or disabled ! A truth, but psychologically, not good for the ongoing quest for recovery ! I cannot tell you how long I sat at the river, but I can tell you that the time spent there opened my eyes to the things in life that really matter ! In going forward, my whole mind set changed. We need to nurture what life we have in the now, coz there are no guarantees of what tomorrow will bring. Appreciate what we have, and continually strive to better that. So heading into my third year of crippledom, does not seem as daunting as the lead up to my second year anniversary !! We must love, laugh, listen, live, and embrace what's dealt us in life and strive to enhance all of the aforesaid ! My quest to walk again has been renewed ! Against all odds, one can achieve anything !! Trust, Believe, and make it happen !! As always, sent with love and ongoing good health wishes !! G.

Leaving Alcatraz and Starting my New Life !!

So my time at Stanmore was coming to an end. Nearly seven months as home, it had now become my prison ! After a year of hospitalization, institution food, regulated daily regimes and not having had to think for myself. A daunting thought of re-entering society as a disabled being ready to face my new challenges. I was excited, but very apprehensive of my own reaction to fitting back in. The depressing corridors, small single room, endless hours of boredom, the smells, the constant care, the reassurance of "on hand" help if I needed it........... I was gutted, I was fearful, I was excited ! A mixture of emotions not really able to explain, but realizing deep down that the confidence I once had in life, was no longer there. My road to recovery had so far been pretty good, but it was time to take that further step forward in order to build further steps in going forward with building more independence within myself. My discharge date was set for 28th August. This was it !! My bubble of security to be whipped away in order for me to move on. My care package now in place and with two days prior to release, I meet my two carers who are summoned to C Block for training prior to being transported home to my sterile home, so great fully acquired through the Aspire Charity. My good byes, my independence thrown at me, and finally the transport arrives to take me home !!! A feeling of utter insecurity, a feeling of " what if, what now " etc etc, and a feeling of total vulnerability as the door to my apartment closes as the settling in team leave !!! So here I am, with two vertual strangers in my face, 24/7, in my adapted apartment, out and to get on with it. Having precious little self esteem, confidence or faith in the community system, it was literally " do, or die ". I quickly adapted to the system, and decided to fight ! Not only for my independence, but for the life I had before ! That was and isn't to be. I am still the person that I was before, but with more challenges as before !! Tomorrow marks my two year anniversary of this debilitating condition or journey that has been handed down to me. I will conquer, and I will fight it until the end. I firmly believed that after two years I would be up and running again ! Sadly, that's not to be at the moment. I have embraced my situation, will work with it as long as it takes and most importantly, make a difference to others who find themselves in the same, if not worse position. I'm not regretful, sad, or envious of those able bodied people that are able to J-walk, hop cabs, climb steps etc etc etc, but rather, thankful that I, at least had 50 odd years of being able to walk !! I am positive, embracing, and willing to face this head on, with no great expectations ! I have beaten the demons, accepted where I am and thank you all for the amazing encouragement !! All so greatfully accepted in my Long Walk to Freedom. Sent to you all with love, and ongoing good health wishes !!! G.

Getting to Stanmore - AKA - Alcatraz !!! - Parts of journey not shared before !

My discharge from the RLH was now imminent ! My trachie now removed, vocal cords working again, breathing on my own, and after months of ICU and high care, I am destined for rehab !!! Still basically a mop, but flickers of hope showing in my right arm and hand. PROBLEM ONE, my cell is not available at Alcatraz for another two weeks ! A decision is made to transfer me to a head injury rehab Center in Lewisham, which has two beds dedicated to spinal injury. A pleasant enough facility if you are brain injured, but singularly the most depressing place if you have your wits about you ! As I had contracted the MRSA virus, I was again given a private room. My days were spent on the third floor facility overlooking a dismal river and a small park, surrounded by non-communitive people all watching the same TV program day after day ! Sad, dark, and very depressing. I would ask daily at the front desk if they had contacted Stanmore to see if my cell was ready !! Always to be told that as soon as they heard I would be transferred. It was here that I met a woman who had a profound influence on my attitude towards my injury. She was a nurse assigned to me by the name of Molly. I asked her one evening " how long, and why she was working in a ward like this ", and she simply answered..... " I have been here for 30 years, and I look at every patient and say to myself, this could be ME ! " of Jamaican decent, she used to hum to me whilst prepping me for the night. No masks, no gown or apron, no gloves etc etc, she treated me as a person rather than a being in a vegetative state ! She would always close my door for the night saying " never give up ", words that to this day inspire me to continue with my quest to rid myself of this chair !! Coupled with the fact that the consultant I had been handed over to - who was particularly interested in my " unusual " presentation !!! Being the Guinea pig for teaching specialists with various trials that needed doing was no fun. After a week of prodding, pushing, Asia testing etc etc, I refused his request of using me as a " specimen ". He was not pleased with me, but wanted to keep me there in what I believe, was for him to further his career by writing papers for the medical journals !! I got to dislike him intensely, made it quite clear and hounded the front desk about my placement in Stanmore. To this day, I believe that had I not pushed so hard, he would have tried to keep me there as one of his self indulgent case studies. Lis', Jen, and Nic and Graaaamie, trudged out there to see me, and all agreed - get outa there as soon as possible !! it's depressing !!! Having tried to spend time in the " social " room and finding it way to depressing, with a nurse in each corner keeping an eye out on all the patients, I found solice in rather retreating to my room, closing the door and pondering my fate for the future ! Was THIS going to be how life was going to be forever ? Banished to some institution, hidden away from society, locked behind electric doors which could only be deactivated once a nurse had been assigned to you if you wanted to go off the ward. I DON'T THINK SO !!!! Mentioning visiting, I am forever grateful to Jen, Nic, Graam, and Peter for their constant following of my journey. Through thick and thin they made their way to see me. Even in the most dire of circumstances, they made it to my bedside, offering all the encouragement possible. Never failing to generate positive energy in going forward, even though we knew how dismal things were !! Jen with her packets of chokkies and biscuits, Nic with Holy water, and peter with fruit etc etc. Behind the smiles, jokes and encouragement, we all knew how dismal my situation was. The few hours a week we spent together was what kept me going. It was here on the third floor, locked away, with constant moaning and groaning filtering into my private room from the other patients that I thought very strongly about suicide. I mean, what was my life worth to me ? Little movement, banished to a chair, locked away......... The problem was, HOW !!! I could hardly ask the nurses to overdose me !! And all meds were under lock and key. Dished out at regimented times, watched while swallowed and signed off by the administering nurse. That period of my journey, just short of three weeks was possibly the darkest phase of the ride. having, for once, pretty good internet connection, I researched all the euthanasia clinics, and quickly came to the conclusion that it was not as easy as making a reservation, arriving and having a last meal - bidding your loved ones goodbye and then swallowing a heap of barbiturates and dropping off to the land of nod forever ! NO, God was not that easy to leap frog ! There are all sorts of moral, ethical and religious grounds to be hurdled and then the courts to contend with which could take up to two years to decide. And my condition was not life threatening or unbearably painful !!! I was very much an unlikely candidate to be considered, which only depressed me more. It was then that I started and to this day still do, my weekly update with the medical fraternity : do not resuscitate, no life support machines etc etc in the event of a reoccurrence. THEN, came the day !!!......... My bed became available at Stanmore ! Molly, came in to inform me of my transfer ! We cried together, and then she asked if we could pray together. I agreed and still to this day have no idea of what we said, but Molly was gutted ! I was extatic to being moved to my final rehab place, but shattered to be leaving one of the most beautiful souls that I had met ! Molly if you follow my blog - always remember how instrumental you were in maintaining my sanity in Frank Cooksley Rehab. Xx was sad to leave Molly behind but OH SO pleased to be leaving the third floor facility for good. So the two and a half hour ambulance ride to Alcatraz goes fine ! I arrive at what seems like a squatter camp ! A mish mash of buildings spread over an estate much like a movie set made for a concentration camp !! I am transported inside to a private, isolated ward because of my MRSA status. I have a door out to the garden and the inner ward is top class, the nurses unbelievable, and the attention to patient requirements admirable !! Even with the everlasting mixture of urine and bleach smells, I was in " heaven " ! I had access to a garden with trees, flowers and sunshine. The spinal unit was a recently upgraded section to the hospital with direct access to the gym and the Aspire Charity section with coffee shop, leisure Center, pool and sports facility. The GB Rugby team ( para's ) used the gymnasium to practice, which was a good outlet to watch. Although all patients on a frantic schedule of Physio, OT, meetings, lectures, life skills etc etc there was a sense of freedom. Continual encouragement by staff to interact with others, explore the surrounds, go to the coffee shop etc etc, all the while installing a form of independence into the subconscious. The first week in Stanmore was filled with tests, examinations, meetings with psychologists, case managers and the meeting of one's mentor for the duration of one's stay. This mentor would become your arms, legs, bowels, bladder, and education officer on living life with SCI. It was during this week that I met my assigned consultant. A Scottish lady, probably mid forties, abrupt and to the point bedside manner ( or so I thought ), initially I thought she was a bit dismissive. This was Angela Gall. Who I grew so fond of and realised very quickly how wrong I had initially been in my judgement of her. My assessment meeting with Angela was an hour long one on one, once all test results were back and I had had all my mri's, X-Ray's and every organ scanned. This meeting was harsh ! I wheel myself into her modest office and " no holes barred " I get the run down of my injury ! In simple everyday language she explains everything to me. Offering no promises other than her and the team getting me to stand. Walking, no promises and in actual fact pretty little chance if at all. My presentation is " unusual " and I will be treated on an " as we go, let's see what happens " basis. Again, I'm a prime candidate for " trials " as I am an " unusual " case !! I soon nipped all the requests in the bud by refusing any further procedures that may or may not help medicine in years to come. Selfish, some may judge, but my primary goal now was to concentrate on my own healing process, both physically and emotionally. Angela predicted a 8 - 10 week rehab program which landed up being just short of seven months !!! Yes, Stanmore, which soon became Alcatraz was to be my home for that part of the journey. I have blogged good and bad about Alcatraz in previous blogs, but I am eternally greatful for the opportunity allowed !! Shortly after my arrival, I was retested for MRSA, cleared, and moved into a four bed bay. An experience never want to go through again. No privacy, no sleep, everyone being turned at different times, lights on, lights off.............. Never a quiet moment - how I missed the loneliness of a private ward. I expressed my feelings to the sister who said she would see what she could do. In accordance with NHS protocol, although I had been cleared of MRSA, one needs to be tested three times - Whoops, the next test showed positive and I needed isolating again !! The only room available was in a wing adjacent to the spinal ward called the AMU. I spent the further six months on this ward and request to go back onto this ward when I return for my top up intensive therapies. As mentioned in the past, the staff became my family and a good few friends for life were made here. So.... On the AMU ward my mentor Chrissy was assigned to me. As written above their duty is to educate you through your rehab. Not for wanting to over share, but for wanting of your understanding of their role, this person becomes responsible for your daily care and preparing you for life on the outside. All and I mean ALL dignity flys out the window !! Manual evacuation of the bowels means lying on your side, having suppositories popped up and then manual stimulation to induce bowel movement. No simpler way to put it !! Then, bladder management - first, they try the intermittent catheter route, which involves inserting a 16 inch pipe through the urethral path, via the prostate into the bladder, and Woolla the wee is emptied into a bag ! Try this five times a day !!!! Not fun !. It was agreed all round, that because I didn't have the use of my left hand, a bionic penis was my next option - suprapubic catheter, which to this day I have. A direct pipe from the bladder exiting just below the belly button and flows directly into a disposable sterile bag. A real passion killer :-) :-). The adaptability of the mind and body is amazing ! Having left Royal London weighing in at 49kgs, dropping to around 45 at Lewisham, and arriving skeletal at Alcatraz, meant dietician input and various diet measures put in place ! First high fibre, then low fibre, then full fat, then low fat...... The list goes on ! But I got so comfortable there that within no time, Luc' the Philopino kitchen lady simply decided my daily food intake ! She fed me apple crumble and double custard three times a day - I gained weight in no time, and now have to diet to keep weight off !!! ME, who had a 29" waist prior to my injury !!! Absurd !! So my time at Alcatraz was coming to an end. On Angela's good advice, she felt I was becoming institutionalised, my therapy on the level, and it was time to start prepping me to face the big wide world again, with a readmission months up the line. I cannot explain the fear of having my bubble taken away from me, nor the sheer lack of confidence in myself to face the world again. Me, who nothing daunted, was scared to show face and grab the world like in my past life !!!! i don't think anyone can comprehend unless in a similar circumstance what it's like to re-enter society in a wheelchair where everyone looks down at you ! And I am talking literally ! Just to be at eye level again !!!! But, as I said before, this is not a sympathy blog, rather a reality blog ! I am so thankful for what I have now, and am able to be thankful for what I had in the past ! I thank you all for reading my blog, for commenting on it, for the encouragement, and above all for humouring me with attacking the demons leading up to my two year anniversary !,, My next one, will highlight the prep for release, the outside world and the ability to make a change to this beautiful place called " our world ". As always, sent with love, and ongoing good health wishes !! G.