Reading other people's articles in Backbone, the newsletter of the charity the Scoliosis Association (UK)(SAUK) inspired me to write my own and hopefully by me writing the account of my experiences it might encourage people to make donations to SAUK. My condition was not diagnosed until I started my teens, however, it was noticed much earlier but nothing was done about it. I had to go into hospital at the age of seven to have my tonsils and adenoids removed and I remember very clearly being surrounded by doctors and nurses with the curtains drawn around my bed and they were all looking at my back. I was thinking to myself why are they looking at my back, I am in here to have things removed from my mouth. I was puzzled and just a little nervous about the experience, yet nothing was done about it. The next six, or so, years were a difficult time in more ways than one for me but my back was becoming an increasing problem and I used to rub my shoulder on the edge of door frames to try to get some relief, but alas it didn't work. School, too, was a concern particularly in PE (Physical Exercise) and the secondary school I attended from the age of ten was quite hot on sports, especially rugby. Being slightly built anyway it was not a sport I enjoyed and my back did hurt whenever I got it knocked, needless to say I was not too popular with the PE staff. One day I had forgotten the note from my parents to excuse me from PE for that day and, of course, the PE teachers made me play a game of rugby. I played for while but after getting my back bumped and banged I was in a lot of pain and all I remember was being taken to Matron's office and laying down on the bed crying my eye's out while they contacted my parents. I don't think it was just the pain from my back that I was crying about, I felt a failure, not being able to participate in a simple sporting activity and also being kind of ostracised by not being involved in the things my friends and fellow pupils were doing. It was a very difficult time. My mother did take me to see our GP at the time, he had a look at my back and said, 'oh don't worry Mrs Sylvester, your son's back problem is only fluid, it will eventually go away.' It didn't go away, of course, so I kept on complaining and rubbing my back against door frames until one day my mother had had enough and called an emergency doctor out, who within seconds asked if I had ever seen an orthopedic consultant about my back, my mother simply replied, 'no'. An appointment was made for me and at the age of 12/13, I was finally seen by an orthopedic consultant called Mr Berkin. I remember him very well, a tall slim man with a grey-white hair wearing a white coat and circular spectacles with half-mast trousers and he carried a small recording machine which he would talk into every now and then. My mother came with me and on occasion I would ask her questions and she would reply and sometimes answer questions on my behalf. I remember the consultant turning to my mother and asking if I was deaf, my mother quickly replied, 'oh no', he then simply but firmly said, 'then shut up'. He was always very pleasant to me. My mother and I both laughed about that day for years afterwards. My mother was a very slim and petit lady but very tough and could look after her own corner should she choose too defend it. I was diagnosed with scoliosis with an angle of curvature of 82 degrees. I was told I would need to have a Harrington Rod emplacement operation, in fact I had two rods fixed to my spine. My mother took the news worse than me, I think she felt somehow to blame, she also anticipated what might be to come ... social stigma and just more difficult times ahead for the both of us. As part of the diagnosis procedure I had to go to have some x-rays and photographs taken, the x-rays were ok but the photographs I found a little more difficult. I had to strip down to just my underpants and in a studio stand in front of this screen and bend down touching my toes and from side to side so the photographer could take the photographs. I kept saying to myself it is part of my treatment, but I did feel exposed. School was informed that I was to be admitted into hospital for a major operation and would therefore not be attending for a while. There was a kind of teacher at the hospital, but it was not really school work that we did more occupational exercises, I remember I became quite a talented weaver of waste paper baskets and plant pot holders. The first six weeks in hospital were devoted to traction and physio-therapy. To make my spine more supple in preparation for the operation I was to have traction which meant laying down on a bed every hour for ten minutes. I fastened a strap around my middle, another around my head and also put my feet through these two straps and then pressed my legs down, this then stretched my whole body. I had to count to ten and then bring my knees back up and just kept repeating this for ten minutes. The straps around my ankles were attached to weights which hung off the end of the bed and I think there were also weights at the other end of the bed from the straps around my chin. The physio-therapy I had was to help my breathing, apparently my right lung was not working as it should and was putting a strain on my left lung. Therefore I had to do exercises to help get my weaker lung to be stronger. There were several exercises but one in particular I remember was laying on a bed with my chest and head hanging over the bed on the floor and I had to hold a bag of sugar on my head and then lift my top half of my body up until it was raised above the bed while the therapist held down my legs on the bed. I guess a kind of torso press-ups. Another exercise was to place both hands on my chest and as I breathed out I had to press down on my left side and then when I breathed in I had to press harder on my right side (I think I have that the correct way round?) I turned 14 during my time in hospital and for a while the hospital became my protective shell and if there were times that I was to go home I used to not want to go and I was always keen to return back to the hospital. I made some friends in the hospital, one in particular was an elderly lady, Mrs Scott, she was very concerned about me when I went down for my operation I heard. The orthopedic unit we were in was in the grounds of a mental asylum called De la Pole hospital and one day I remember a man running through the orchard and past the windows of the ward I was in closely followed by two other men in white coats, it did seem a little like a scene from a Carry On film. It was Christmas time and over in the psychiatric part of the hospital some of the staff there were holding a Christmas carol concert and as patients in the orthopedic side we were allowed to attend. Mrs Scott wanted to go, so I offered to take her in her wheelchair - she only had one leg. We had to manoeuvre over some of the speed bumps in the road and we got a blanket caught in one of the wheels, it sounds serious but we just giggled about it at the time. I also made great friends with a young girl called Sandra, I believe she was only seven or eight but we were best friends, I often wonder how she is doing today. I think she looked upon me as an older brother figure as she didn't seem to have much family or many visitors. The day came for my operation but there was rumours that the surgeon had been in an accident while on holiday skiing and broken his leg and therefore there was some doubt if my operation was going to go ahead. It did and I believe my surgeon did the operation with his leg in plaster - now there's dedication for you. I don't remember ever being nervous about my operation but what I do remember was a fear of having to take the medication - I dreaded it and one of the sisters, whose name I forget, tried all kinds of tricks to get me to take the tablets or medicine including holding my nose and mashing up the pills onto some crackers. One tablet in particular had to be taken with milk - I especially disliked taking those and for years afterwards I could not drink milk without being reminded of those tablets, so for a number of years I never drank milk. I understand my operation took four hours and apparently I coughed during it. My degree of curvature was reduced to 32 degrees. I remember being in the recovery room and drifting in an out of consciousness and the nurses giving me injections for pain but then the injections stopped and had to have medicine for the pain. When I asked why I couldn't have any more injections (I didn't fear injections) they told me I could not have any more injections as it was making my limbs go numb - I do remember my legs being kind of numb. I also remember the physio-therapist coming and asking me to wiggle my toes, which I did and all was ok there. The first stage of my recovery was on a striker bed, this was a bed no wider than an ironing board and the whole bed could turn you upside down when the two halves were put together. This was a time when I had to be as still as possible hence being on this bed which was used to turn me every four hours, even throughout the night. If I was laid on my back and needed to be turned over the procedure was, two belts were put across and I was strapped in, then a sheet was placed on top of me and a mattress, the other half of the bed was then attached to the part I was laid on - when complete it made a circular frame which was unlocked and then turned over. I do have a very graphic image in my mind related to this memory and it is of the drain from my body which went to a large glass bottle under the bed, this also was attached to the bed and as I was turned I could see the drain and bottle also turning with me and the blood in the bottle sloshing about. Not sure how long I was on the striker bed for, between ten days to two weeks I think. I used to get so frustrated and upset at this time as prior to my operation I was a very lively child always running about and now I had to be as still as possible, it did feel like a torture, but I also understood it was for my own good. The next stage was to have a plaster cast made. I remember my bed and me being wheeled to the plaster room and then me being lifted onto what one can only describe as a plank of wood. This was very uncomfortable and I was very concerned about my back, the nurses did their best to try to reassure me. A white cottonwool-like bandage was put around my front and back and then the plaster strips were applied on top of this. It made quite a think structure running from just under my armpits to above my hips. For two days I was laid on a spring bed, no mattress, with a heater placed underneath the bed springs to dry the plaster cast. This experience was terrifying, as the plaster dried it felt like my chest was being crushed, the medical staff obviously were well trained in dealing with the effects from this plaster cast drying sensation as nurses would sit and hold my hand for hours at a time. Once it was dry, a square whole was cut into the plaster to allow my stomach to expand after eating. That experience has been one of the most terrifying experiences of my life. I think following this I began to feel unwell and get very depressed and the hospital decided I should go home for a period of time to be with my family and familiar surroundings - I don't think I wanted to go home, if I remember correctly. My bed at home was moved downstairs to the sitting room and my mother took time off from her work - she worked as a Home Help to elderly and sick people - to be my personal nurse. I don't think I made a good patient to my mother and did lose my temper at her on several occasions but she told me later that the medical staff had warned her that I may do this and not to take it personally as I was just being affected by the operation. Looking back I do regret my behaviour and recognise I was taking out a lot of my frustrations in life on my mother. It was an uncomfortable time for me though, the bed was right in the middle of the sitting room in the way of everything and everyone, people couldn't watch the television, it was just a further irritation for me. I was looking forward to going back into hospital. When I did return to hospital, about one month later, I was to begin the next stage of my recovery process which was to learn to stand and walk again. A standing bed, as it's name suggests, is to help a patient to stand up by rotating from a normal horizontal bed position to a vertical position. It took me a whole month to learn to stand for long enough and walk again. I believe I was told that due to being in bed for so long and the fact that now my spine was straighter my centre of gravity was different and also I was wearing a thick and heavy plaster cast. This is why it was a difficult process. The first time I used the bed control to swing it into the upright position I was excited but felt very faint as I stood up. I was only allowed to stand for a few seconds and then the bed had to go back down. Gradually getting used to the process and being able to stand for longer periods I felt very tall, not just physically taller, I was indeed three inches taller in height following my operation, but also psychologically taller, it was also an important developmental time in my life being age 13-14 puberty was having its own effects on me. Once I could stand and walk again it meant that my stay in hospital was coming to a close and I was allowed to go home to continue my recovery. The plaster cast had to be worn for six months which meant through the spring-summer time. Naughty me used to get one of my mother's knitting needles to push down between the cast and my skin to scratch some of the many itches I got. I was still not allowed to attend school and didn't receive any tuition until much later on. I was not allowed to travel in a vehicle unless I was laid horizontal, I remember my father giving me a mirror to hold up when I was in the car so I could see where we were going - it was a little strange. When finally I could sit up and travel normally it was very disturbing, the traffic seemed to be coming towards us so quickly, I can honestly say I am a much more nervous traveller post-operation than I was pre-op. Following the six months of plaster cast wearing came a further six months wearing a surgical corset. Towards the end of the plaster cast period I had to go to hospital to be measured-up for my surgical corset. The nurse got this electric saw but said, don't worry it won't cut your skin, and proceeded to put the saw on the back of her hand. She cut from top to bottom on both the right and left sides of the plaster cast. When she peeled the two halves apart I could see my 'green' wrinkled skin - arrrgghhh! An enormous tingling feeling came over my upper body and it was like blood was rushing in all the places it couldn't reach when I had the cast on. I was also very itchy and set about peeling off this 'green' dead skin. I had measurements taken for my corset and then the plaster cast was put back on and stuck together in a temporary fashion. It wasn't long before my corset was ready, a cream and green coloured heavy duty material with two metal rods in the back and straps at the sides. It looked like something they would use in the mental asylum or a prison to restrain a person. This I was to wear for six months which I wasn't looking forward to as I was due to start back at school again. My parents had been able to secure some private tuition for me while I was still at home but as the private tutor said, it is nothing like being taught at school as you do not get involved in experiments and therefore don't remember things as easily. When I finally could return to school I was only allowed to attend for the morning period, I had to return home to rest in the afternoons. I was also not allowed to travel on the private bus I used to catch to school and a taxi service had to be arranged. Getting back into the run of school was possibly the biggest hurdle I had to overcome. All my friends I had prior to going into hospital had moved on to other friends so I felt very lonely and isolated. The rest of my class, and year, seemed to be so much more advanced than me in just about every subject. One subject that I did find I had a gift for was Art. I used and devoted most of my time and energy on this subject and did become a bit of a teacher's pet, one could say, to the new Head of Art. We just seemed to click. I felt in a kind of way, my medical problems seemed to help me strive in my artistic endeavours, it certainly gave me a strength with which to question myself and life. I took my 16+, CSEs and O-levels and I didn't do very well with my grades - it was devastating to me but I decided to drop down a year and re-take the whole year in a completely different class. This was certainly a crucial character building time of my life. The new class of people seemed a generation apart from me, I didn't know anyone and didn't feel I had anything in common with anyone. Yet, I became a most determined and focused individual, I began to look further into the future and knew I wanted to go onto college. Following my return to school from my operation I was in the school annual awards ceremony three years on the trot. The first award I received was the Jane Clare Blakey Trophy for Effort for my progress at school after returning from being away so long. The second award was the Amy Meggit Prize for English and the third was the Bell Art and Craft Cup. I felt very honoured to receive all of them but the last one, for me, was a personal achievement. My parents, mother especially, were very proud. I finished that year and my exams and then went on to take A-levels and finally my dream came true I got a place at college and so went on to study for a degree and was awarded a First Class Honors Degree in Visual Communication. I did decide to do a spell of voluntary work back at the hospital were I had my operation as my way of saying 'thank you' to them. It was over a two-year period and I did feel special, being 'behind the scenes' so to speak and on the other side of the patient-staff relationship. I helped the current patients with any errands they wanted and assisted the staff by tidying out the laundry rooms and taking cups of teas round. I did, for a brief time, think I should go into the medical profession but my strengths laid elsewhere and the nurses used to discourage me from entering into their world and encouraged me to carry on with my artistic pursuits. Time for a while settled down into a normal working routine but I always had 'issues' around my appearance and especially my back and this in turn affected my self-confidence and self-esteem. After much deliberation I decided to go to see a psycho-therapist and I have to admit this has been one, if not the, most important things I have done in my life. I know it doesn't work for everyone but for me it was like going to the gym for my mind. I wouldn't say I have everything sorted out, not sure I want to it might mean I had stopped looking, but I am happy with who I am and where I am at in my life. One time I was of the opinion that I was somehow 'damaged' or 'not as worthy as others' because of my back and the way I looked. I used to say to myself, 'if there were two Trevors and one didn't have this back condition and the other one did, who would people choose?' I understand now that I was simply struggling with accepting who I was and what I looked like. On a practical level which helped in turn to boost my poor self-confidence I was fortunate that during this time the fashion in terms of clothes was to wear baggy and this obviously helped me 'blend in' society and therefore become accepted in my eyes anyway. Now I am relieved I don't have all that to concern me and being a much happier individual and more confident as a person I often forget about my back. Now at the age of 43 I recently moved from London to live with my partner in the Bedfordshire countryside working freelance as a Graphic Designer, and I love it. I still suffer from the effects of my back condition on a physical level I get very tired and my back does ache quite a bit, but I just take a rest and have a lay down and I feel better. On the odd occasion it is more severe I do have to take a pain killer but I have never been one for pills so don't do it that often. I have learned that one of the most significant things in my life is my back condition and for that I will always be truly grateful for it has helped to 'shape' the way I am and to make me the individual I am.