What we must learn to do, we learn by doing
18.1 "....it ainít what you do...."
On leaving the rehab unit there were many goodbyes to say. Cathy and Sue, my physios were leaving to go to other areas. Diane was moving internally. Saying goodbye to Kathy I advised her to choose her direction, she was torn between the hands - on side of her job where she had gone about as far as possible and going into management which would not have suited her. I also told her she looked tired stressed out and needed a holiday. That did not go down well so I had to tell her she was still gorgeous (Iím taking my life in my hands here, her husband is a lot bigger than me) which made her smile. Shortly after that Kathy found she was pregnant and so got her long holiday in a way she had not expected. In that time a text book on specialist nursing to which she had contributed was published. This has enhanced her reputation within the specialist field of rehabilitation nursing. I get the impression that on returning to work she will be more involved with training than administration. Letís hope it is so, we need somebody like her on our side.
All the things Iíve said about Kathy have been in fun of course and exaggerated to emphasise the comic side, she is a consummate professional but surpasses professionalism by finding time to be human and share some laughs. The fun I had with her and the other girls really helped me believe I was still the same person. That was the most important thing. I hope the rehabilitation team learned something from me. One thing that has been said more than once is that I am different from other stroke survivors and that is outrageous. I may be more assertive (gobby if you like) than most but we are all the same in the most important respect. None of us would have chosen to have a stroke. Many people have found the strength within themselves to battle through recovery, others need a little help in finding that strength.
Between the extremes "Your life has changed fundamentally, you will live in a wheelchair" and "donít think of yourself as disabled, you can do anything from a wheelchair" lies the reality "you life is the same but in future what you do will be restricted by your disabilities. Resent them and you will lose, adapt and you will triumph."
(I still miss Kathy of course for the advice and friendship she gave me, in fact each day as I sit and drink a small glass of a French, aniseed flavoured green liqueur I find I miss her a little more. That is probably because Absinthe makes the heart grow fonder. - I was determined to get that joke in.)
18.2 "....heís a real nowhere man...."
Being discharged left me in Limbo. Mentally it seemed the restoration was complete, but physically the wall was still there waiting for me to slam into it. Sue had got me walking short distances better but the distance limit on walking was still only about fifty yards before the stride pattern degenerated. Even that short distance took ten minutes and could only be accomplished once a day. The abdominal and hip muscles were being very petulant and there was feeling but very restricted movement in the left leg, particularly below the knee. I had not mastered lifting my leg with "quads" and swinging it forward and will never know how I accomplished something resembling that movement. It involved something like throwing the whole of my left side forward from the right shoulder. Some of the things I had learned were consolidated though. Sue and Cathy, in "off the record" conversations helped me understand more about what had happened to my body and brain, what was happening and what needed to be done through conscious effort to encourage improvement, maintain the gains and achieve a better understanding of my condition. I am not going to attempt to describe the way exercise and the confrontational approach to self - healing is gradually working through my body awakening and stretching me because, a) Iíll get it wrong and, b) itís probably different for everybody. The main thing at this stage (and its a long stage) is perseverance. What I was learning from the worldwide web was that the important thing is not "rebuilding patterns in the brain", but getting work into muscles. A lot of the memory of movements are local. Wake them up and the muscles remember what shape they should be and what they are supposed to do.
There would have been no point in my getting on the floor and attempting press - ups or buying an exercise bike. Small, repeated movements were best. I also learned to listen to my body and co-operate with it rather than making it co-operate with me as I had in the past. My body was telling me the gut feeling had been right all along so I sawed six inches off the walking stick, walked better straight away, started to actually moved my left hip and entered a long and very painful period of stretching and restoring far more muscles than most of us ever knew existed. After a year it is still going on. By working as a team my body and I have progressed from being able to move my fingertips to being able to bend each finger down to my palm in turn, (the pinkie still takes the third finger most of the way with it.) became able to move my left shoulder and started to rebuild a little of the lost muscle and managed to develop something resembling a normal human stride pattern as opposed to a stiff, robotic sway. Iím not going to describe the pain in my shoulder, down my left side, through the hip, thigh and knee and on into my foot because a) it might scare some people off, and b) others may think Iím being a drama queen. Though the shoulder is still being neglected the best exercise for it has been walking with a proper action and some strength has returned. There is still little control but that may come.
It is often necessary to retrace my steps and correct faults but my body has proved itself a lot more clever than my brain in this respect. All the physios had told me about rebuilding "patterns" in the brain and had warned of the dangers of building bad ones. Actually my muscles refused to set up the line of communication with my brain until I got something right, thus though I might have been doing something badly because it was the only way I could do it, I was always driving the movement by conscious thought until the muscles involved were capable of doing it correctly then they took over and let me get on with something else. It is a slow, tedious business.
Leading thinkers in medicine are currently making many breakthroughs based on the discovery that the body is its own best medicine. We are born survivors and programmed to heal ourselves. Stories are emerging of people who have severed nerves in their spinal cord recovering feeling and movement several years after the event that paralysed them. Similarly following head injury lost sight has returned and memories have been recovered.
It has been said many times during this long process of recovery that I must be a particularly strong willed individual. Throughout my life, from the inside looking out, it never seemed that way. Though able to focus on reaching a particular goal or concentrate very intensely on tasks or problems that interest me I have always considered among my failings are; not taking anything very seriously and getting bored rather quickly. Then there is the question of determination, which was valuable in motivating myself to accept the pain and physical difficulties of reprogramming my nervous system. Before the illness people never used to admire my determination, rather they would say things like "youíre a stubborn, awkward bastard. Determined; stubborn. Where does one start and the other end?