"look at yourself, look"
I stood in front of a full length mirror, side on with head turned to my right. There was a straight tall man looking back at me. Was it me. goodness, it can'r be, but it was. The stress of the surgery melted away. I stood humbled, looking at the evidence of the disappearence of years and years of staring at the floor. It took my breath away.
"Look see, I told you Look"
I just stood an looked, couldn't talk, couldn't respond to Ellen.
It had worked. I wasn't paralysed, it had worked. The joy in me was restrained, held back, never one really for a dramatic public showing of honest, how I felt drama. But the joy in me was real, it was quietly overwhelming. I was overwhelmingly quiet, I just stood and looked at the new me.
I loved the new me.
As we walked away, the new knowledge seemed to trigger in me a feeling that I was falling over; backwards. So many years hunched over and suddenly I felt that I was leaning backwards.
Muscles that had been constrained, limited for years were now free to flex and move. I could get rid of indigestion so easily. My legs could walk and stand straight and I could still see across the road. This was not an instant happiness, more of a growing, glowing one that became ever headier as I discovered one by one, all of the new things, the ordinary things that I could do.
I was wearing my new velcro fastening plastic jacket. This was a compromise, it acted as the plaster would have done, but I could adjust this one and more to the point, I could remove it. If I was going to walk, I put it on and tightened it pretty well as tight as it could be. Sitting and I could wear it slightly looser.. Sleeping, then it stood on the floor at the side of my bed, something like a disembodied torso shining white in the night.
Spasms were almost a regular part of getting out of, and into bed. The positioning of every part of me had to be precis and the timing too. Sometimes I could rise from the bed quite easily. Getting back in was many times more difficult and it was usually then that I endured the really strong spasms.
By now I had been in the hospital about two weeks. I wanted to be away home.
"Will I be discharged this week Jenny?"
"If I discharged you, could you manage at home Alan?"
"Err nothing, you know you couldn,t, go and have a cuppa"
Jenny was super. A rock. The kind that stimulates absolute confidence in you and in her abilities.
I was receiving anti rejection injections daily. Apparently some folks bodies reject the titanium instrumentation, the skin goes black and rots, this was a worry because the way to cure this is to open you up and remove the rods and screws......Noooo, so I was grateful that I again was lucky and showed no signs of rejection.
The day that I had asked to be discharged, in the afternoon, Jenny came to me and asked if I would mind if a man came to see me the next day. He to had AS and was contemplating similar surgery. Would I chat with him about the whole experience?
Well of course, how could one not? This hospital had given me a new life, I wanted to give something back.
The man arrived the next day. He was older than me and also had Parkinsons Disease. He was quite stooped. His wife was with him, Jenny brought them to me and then left us to it.
I talked and answered questions, much along the lines of these random chapters. The mans wife said No, No you arent having it. The man seemed to nod assent. When I saw Jenny some time after, she told me that the man had decided against surgery, it was too much to go through.
There were many more worrying moments, more wonderful care, a staff of doctors and nurses who were second to none. I wont go into every detail here, sufficient to say I was on the mend.
I went home after 3 and a half weeks in hospital, I still couldn't sit or lay down alone but I more or less insisted that I go. Jenny was still not thrilled with the idea. I got home and was in big trouble, nightimes aliving hell, my family wonderful.
Ellen was popping next door and left Esther babysitting me!
"What shal I do if Dad screams Mum?"
"Just ignore him"
She was gone for nearly 5 minutes so Esther was spared such decision making.
5 Weeks later I went for a walk to watch Rufus in her school sports day. I was very tired and in pain when I got there. Neither were there chairs so I stood. Walking back home was agonising, though somewhat defraying the misery was Ruth's proud smirk and purple pinned on ribbon for second place in the egg and spoon race.
From that day, the spasms and the night pain stopped. I was well again.
15 years later, I have my friends and fellow sufferers here on KA. I am tall, and strong, life is new and wonderful.
I am one of life's rare and privileged people.
Years of AS and then the surgery has taken my life to unexpected places. All of those experiences make me what I am, I am happy to be me.
Life is wonderful. I live it every day.
Blessings to my lovely Mig who prompted me to bore you all with this
To my friend Colin who too has encouraged me to write. And to Wendy for her nice comments along the way which kept me going. Oh yes, I nearly forgot, that Kevin bloke as well....