Living with... Cerebral Palsy.
I want to start by saying that I am struggling a little with the “Living with...” title. Living with, implies there was a time when I lived without it or it is an addition to one’s life. However, I have had Cerebral Palsy (CP) from birth therefore I have never known a time when I did not have it and it is very much woven into who I am. For me it is like saying, living with having a head on your shoulders. To think otherwise seems ridiculous and beyond imagination. It is like that when I think of having CP, to imagine life without it or to put it in a neat little compartment of my life seems ridiculous to me and outside of my imagination.
Writing this article is not easy because having CP is a whole life experience and without writing my whole autobiography I can only give snap shots of different times in my life. I guess the best place to begin is to tell you a bit about myself and my disability. I am a single man living in Nottingham, I am in my early forties, I live independently in my own home with support from Personal Assistants (PA), and I am on the management boards of a number of disability organisations in a voluntary capacity.
My CP was caused by a lack of oxygen during complications at birth that resulted in brain damage. This damage basically messes up the communication between the brain and the muscles in my body. For example say that my brain tells my hand to make a certain movement, but the muscles receive scrambled control messages, which means my hand movements are jerky or I may even make a totally different movement to what I intended. CP is as unique as people are themselves in that it never has the identical effect on one person to the next. Its severity is also infinitely variable from the mild to very severe. The physical effects of CP for me are that I have poor coordination of all my limbs, I am unable to walk, I have difficulty in sitting up straight, and I have a significant speech impairment. So I depend on a powered wheelchair for my mobility and my computer is a great aid to communication.
For me I would say that the most difficult aspect of having CP is my speech impairment. It is the route of most of my frustrations in one way or another. Society’s expectation is that everyone is able to express themselves eloquently and efficiently through speech. Most people who come across someone like myself, with a significant speech impairment, they simply do not know how to deal with the situation. I think this leads some people to avoid entering into conversation with me in order to avoid their own fears about entering into an unfamiliar situation and the embarrassment they perceive it might cause.
My speech is understood by those people who know me, although some people are better at understanding me than others. I have a theory on this; I do not believe it is about their ability to listen, but rather their ability to interpret and used the context to workout the bits they do not understand. I do get frustrated at times when people do not engage their brain when trying to understand me. Just the other day I was in the kitchen trying to tell my PA what I wanted to eat, and she repeated back to me that she thought I was saying, “I wanted her to put the cat out”. I do not even own a flaming cat, and even if I did, what has a cat got to do with wanting something to eat? An extreme example, but it is true and it infuriates me because it defies logical thinking. Most of the time, when people do not understand me, I am happy to repeat myself or to think of another way of saying the same thing until I am understood. Even when people pretend to understand me, I can usually tell by the split second pause while they try to decide whether to say that they have not understood, before nodding in agreement. The best policy if you do not understand someone with a speech impairment is to ask them to repeat themselves, and keep asking until you understand them.
The point that I wanted to get to is that my speech impairment makes it very difficult for me whenever meeting people for the first time. Not only because of any preconceptions they may have, but because they simply will not be used to my speech and therefore are very likely to have a harder time understanding me than people who already know me. Put this into the context of a social setting where you might expect to meet new people, a pub, a party, or at church, you have lots of people talking and possibly music playing, which creates loads of background noise. My speech, background noise, and talking to someone new; I would say that the likelihood of me being understood is precisely zero. In these situations it is like you feel trapped in your own body.
There is the whole self confidence thing, after years of experiences of not being understood by people, when the opportunity does arise to talk to someone that you might be interested in talking with, you believe that they are not going to understand your speech, so you just clam up and say as little as possible. Therefore, because you believe this encounter will not workout, you do not try in any real way to engage with them, and guess what; the encounter does not work out. I believe this is known as a self fulfilling prophecy. I believe I am an intelligent and interesting person, and if I did not have a speech impairment then I would have much more self-confidence and be much more out spoken.
I believe being in a wheelchair poses yet another set of difficulties when it comes to the social setting. If people are standing at a bar for example talking, you are at a different height to them sitting down. In a wheelchair you need more space, so you can not always position yourself were you might like without causing an obstruction to other people, and you can not mingle in a crowded room without people having to clear a path for you. And on top of all this you have got all the usual accessibility issues and limitations attributed to using a wheelchair.
There is a common belief that CP is a static and non-progressive condition. While I agree if you only consider the route cause of CP, the brain damage once occurred it does not progress any further or get worse over time. However, I believe has a whole CP puts unnatural stresses and strains on muscles and joints, which speeds up the ageing process of the body. This is something that I was blissfully unaware of in my youth and something no one ever warned me about. I naively believed CP was non-progressive until my body told me otherwise.
From my early teens I had the goal in mind that I wanted to be in paid employment when I reached adulthood. I suppose I needed to prove to myself and others that I was as capable as any able-bodied person of succeeding in employment and playing my part in society. For someone with my level of disability this was an ambitious goal and some would have said an unrealistic one. However having set myself this goal early on in life it gave me the motivation to work hard in my education. This meant I was always thinking one step ahead, just as many disabled people have to do in order to progress in life. Computers were the big new technology developing throughout my teenage years and it seemed that they could be the key to me getting into employment. Also I seemed to have a natural gift with computers. I remember when I was about twelve years old I used to take home the school computer manual and I taught myself to write basic computer programs much to the surprise of my teachers, some of which had no understanding of computers what so ever. To cut a long story short, I got five GCSEs before leaving school and I then went on to a further education college where I got another two O Levels and two A Levels. English was never my strong point and I recall my lecturer telling me that I would never pass my O Level in English and she was seriously expecting me to give up on the subject. Now I do not know how others would react to being told they would never be able to do something, but I decided to take it as a challenge and I was determined to prove her wrong. So with the aid of a spell checker program for my computer provided by the technology support service within the college, I got a grade B in my O Level English. And I took great delight and satisfaction from proving my lecturer completely wrong. I have great determination when I really put my mind to something.
Next I went to Trent Polytechnic (now Nottingham Trent University) where I got a Higher National Diploma (HND) in Computer Science. My HND was very strategic in getting me into employment as it was a three years sandwich course, so the second year was a work experience placement. My placement was in the Computing Department of a local government council. I guess this worked well for both them and myself as neither of us really knew how I would cope with full-time employment, and on their part it was a fairly low risk commitment if it all went pear-shaped. I will always be very grateful to the people who gave me this opportunity and to the people who enabled me to fit into the section where I worked. It was a successful placement and my work involved designing and creating databases, and evaluating software packages before they were used throughout the council. In my final year of my HND I had to do a practical project and I ended up doing this within the same department for one day a week. This again was a strategic move as it meant they could not forget about me, and I could keep up with any developments within the department or on the job front.
Once I completed my HND obviously I wanted a job. At that time the council were running a positive discrimination scheme for disabled people. They had central funding available to create positions to employ people with disabilities in order to improve their equal opportunities figures for employing disabled people. My department wanted to take me on permanently and under this scheme they were able to create a new position for me and they did not have to pay me from the departmental budget for the first year. So the deal was done and I was now in full-time employment with a permanent contract.
On the whole I enjoyed my work and my colleagues made it a pleasant atmosphere to work in. In some ways I found work very challenging. I remember quite early on in my time at the council I had to go with a colleague to a meeting in one of the committee rooms where there were half a dozen people who wanted to discuss some project that I was going to be doing some work on. Now you need to know that growing up with CP has meant I have had a pretty sheltered life and I was frankly quite terrified about being in this situation. The idea of being in a big room full of important people and having to answer their questions filled me with fear. What if I did not know the answers to their questions, or if my mind went blank, or they could not understand my speech? I did not have a clue how I was going to get through this ordeal. I do not think I would have felt any worse if I was going before the chief executive board of the council. I could not tell my colleague how I was feeling and it would not have been professional. My biggest fear was the embarrassment if I made a fool of myself.
This part is difficult for me to write because I am frightened that I am giving away my personal secrets, but here goes. People with CP can experience involuntary bodily responses to stressful or emotional situations, which can be seen in the exacerbation of spasticity or speech difficulties. Basically, because you become aware of the situation, then your body becomes more uncontrollable at the exact moment you want to appear cool, calm, and collected. So in the context of a stressful situation this can make interaction more difficult as your bodily control worsens. This makes life hard because it is a vicious circle, you become aware that you need to be calm, that is in itself stressful, and stress makes your bodily control worse, so you get more stressed about it, then your bodily control gets even worse, and on it goes. It is like your own body is betraying the secrets of your inner emotions. The only comfort I have is that most people are not aware enough to make the connections, but after reading this they may now be able to!
I did survive that first meeting thanks to my colleague who did a good job of covering for any lack of experience or confidence on my part. I did eventually get comfortable with this type of situation after some practice. I worked in the same section for fourteen years and worked my way up through the grades including being promoted three times. I eventually became a Senior PC Analyst. One of my greatest achievements was largely being responsible for designing and implementing the Customer Request Tracking database for Desktop Services. This required me to produce computer programs consisting of 18,000 lines of code. This was a high profile system handling approximately three million pounds worth of orders annually and I was responsible for administrating and maintaining this system. I got a great sense of satisfaction when this system was live and running.
Unfortunately after pushing my body hard for nearly fourteen years to work in a full-time job, things started to go wrong. I started my permanent job when I was just twenty five years old and now I was in my late thirties. The first event that changed things significantly started off fairly mundanely. I got back ache. I did not think much about it because I often get back ache from time to time. It started at the beginning of the week with it getting more noticeable each day.
One morning I was in bed and I thought I heard someone at the front door, so I got out of bed and I crawled to the front door as quick as I could. I used to spend much of my time at home crawling around and sitting on the floor, it gave me a sense of freedom from the wheelchair. Anyway when I got to the door there was no one there and at this point I realised that my back was very painful to move. I managed to slowly get back to bed.
My PA came in a couple of hours later. They normally went into the kitchen to start my breakfast while I got up and got dressed. I managed to get out of bed on to the floor, got to the bedroom door and found I was unable to stretch up to reach the door handle to open the door because the pain was too great. Something I normally just do without a second thought. I tried three times, each time the pain just got worse, until I just could not move at all. I was in agony. I had to shout to my PA to come in to my bedroom. I just told her that my back had gone and I could not move. She asked if she should call an ambulance. As this had never happened to me before and I could not think of a better idea, I agreed.
When the ambulance came the paramedics gave me gas and air to get me off the floor. The paramedics thought I had maybe pulled a muscle or trapped a nerve. At the hospital the doctor did not make any diagnosis really, just gave me pain killers, anti-inflammitories, and muscle relaxants. All I know is that the pain was incredible and I could not tolerate to move at all. Later my GP just said that I was getting older and it was my CP taking its toll on my body generally. Just the kind of news that you really want to hear when you feel pretty low and you are in pain.
It took about ten days before there was any improvement in the amount of pain I had when I tried to move. I was off work for three weeks sick then I had three weeks holiday. I was taking pain killers for most of this time. The only time that I was pain free was at night, lying still in bed. It took a good couple of months to get this to improve.
This had put a blot on my sickness record at work and had raised questions about my health generally. I do not think that I really recovered from this during my remaining time at work. I was aware that I was getting more and more tired and feeling generally unwell. I seemed to be catching every sickness bug, virus, or cold going. I was frequently taking days off work sick as I simply felt too awful to drag myself out of bed in the morning, and I knew I was going to get into serious trouble with my managers. I eventually reached the point where I could no longer physically or mentally cope with my job. I could not get any concentration or motivation to do my work. I did not know what was going on, but the physical effects of work were very real. I had not been happy in my job for a while as it had become increasingly more exhausting and equally less enjoyable or rewarding.
One day I went to work feeling dreadful and after going to the toilet to throw up, I made a very conscious decision that I could not go on like this any longer. I remember thinking to myself that day that I would never go back to that workplace again. This was a very irrational thought as I had no idea how things would work out, however I never did set foot in that place again. I just could not do it anymore, and this realisation came to me as quite a shock.
I went to my GP and was immediately signed off work for three months having been diagnosed with Chronic Fatigue. Due to my CP I am always making jerky or involuntary movements and this means that, compared to an able-bodied person, I burn up a lot more energy when undertaking any task. This is why tiredness and fatigue can be a real issue for people with CP. Once I stopped working it was like my whole body went in to meltdown. It’s like you do not realise how hard you have been pushing yourself until you stop; it’s like opening the flood gates. I was physically and mentally absolutely exhausted. I had no energy to do anything or to concentrate on anything. After being signed off work for twelve months and after much consideration I decided that the right course of action was to leave work on ill health grounds. I realised that my health was more important than money, and that you can only push yourself so hard for so long before it all catches up with you. Incidentally, I did have to write my own medical report on the affects of ageing and CP as my GP and the Occupational Health had not got a clue. The result was that I was retired from work on ill health grounds. I have to say that I think it was quite an achievement to be retired at the age of thirty eight!
I have recovered somewhat compared to how I was back then, however on many days my greatest achievement is getting out of bed in the morning. I still get fairly tired as I probably still do more than I should and most of the time I have some part of my body aching or giving me some pain. I believe that this is all part of the cause with my CP and all I can do is carry-on regardless. The alternative is to do very little, which is just not me, and would result in a life not worth living at all.
Growing up with a significant disability has a great impact on life. I went to the same “special” day school in Birmingham from the age of five until I was nineteen. Going to a school exclusively for children with special needs created an environment where it was “normal“ to be disabled, so that you do not see it as an issue or anything out of the ordinary. This was certainly the case in the early years and even later you were in an environment where you were protected from the real world. This may be good at the time, but when you eventually emerge into the big wide world and you have grown up around people who either were disabled themselves or were very comfortable around disabled people, to suddenly find yourself surrounded by people who have very little understanding of disability or even have prejudice against disabled people is a huge shock. I feel that this made it harder to deal with having CP when I reached adulthood as I was not well prepared for the real world.
I really want to say something about the physio-terrorists (I meant physiotherapist) at my school. I do not know if I was just unlucky with the physiotherapist who I was assigned to, but I truly believe that she did more harm to me than she helped me. Her mission was to make me walk. While I do not have a problem with this as a goal, looking back I feel that she crossed a line in pursuit of the goal. I think that she dismissed the fact that she was working with a five, six, or seven year old child. She made me do things that were physically very hard or that even hurt and things that frightened me. She would do things like hold out a bar in front of her with both her hands and I would have to hold onto the bar with my hands and walk forward as she walked backwards. I hated this because the bar was moving all the time and made it very difficult to coordinate my limbs and I was clinging on for dear life because if I lost my grip I was likely to go straight down on to the hard floor which was definitely going to hurt. This kind of cruel game seemed to happen everyday for quite some period of time. In reality I can not remember how often it happened or how long it went on for, but I know that it made me feel deeply unhappy for some time. I also remember during this time that my dad would quite often bring home a Matchbox toy car to cheer me up and as a reward for working hard with the physiotherapist. My parents must have known that I was having a hard time of it, but I am sure that they would have trusted that the physiotherapist knew what she was doing. I think that my parents had the best approach towards my disability, they just ask me to do the best that I could. They always encouraged me to try and do things without putting me down if I really could not do something, as long as I tried my best that was okay.
I had this physiotherapist for five or six years. She gave up trying to get me walking and I remember feeling relieved that I could get on with the school work that I actually quite enjoyed. The cruel joke was about a year or so later the physiotherapist decided to have another go at getting me walking. This would involve instruments of torture commonly known as a walking frame and leg splints. I was probably around ten years old by now. The problem with the walking frame was that I was always banging myself on it and I have always been fairly slim so bones against metal would generally hurt. Worst still was the fact that regularly I would topple over in the walking frame and my full body weight would go down on top of the metal bars of the frame, ouch that really hurt. The leg splints were worn to keep my ankles straight as I did not have the muscle strength or coordination to do this myself. These splints were moulded to the shape of my feet and were supposed to be comfortable to wear, but they never were. In fact eventually I developed sores and calluses to such an extent that my mum asked the school nurse to take a look. The nurse was appalled at the state of my feet and apparently gave the physiotherapist a right bollocking for allowing my feet to get into such a state. Once more I was allowed to stop walking.
I was now eleven and I was told by the physiotherapist that I would be seeing the consultant, who visited the school periodically, to see about getting some new splints and getting me walking again. Well I was filled with a mixture of dread, sadness, and anger. I had had enough, it was too much pain, physically and emotionally, I could not walk far with these aids, even on a perfectly smooth floor I fell over regularly, I could never walk outside in the real world so what was the point, and all this physiotherapy treatment was taking me out of class, which meant I was missing out educationally.
I went home that afternoon and poured out all this to my mum. Mum understood what I had been through and my reasons for wanting to end this physiotherapist endless pursuit to make me walk. Mum suggested that I write a letter to the physiotherapist and the consultant explaining how I felt and that I did not want to continue trying to walk. This was what I did and they basically took this on board and agreed to let me be a full time wheelchair user. Word spread through the school staff about what I had done and I received a lot of praise and respect from many of the staff, I guess that it was fairly unusual for an eleven year old child with “special needs” to take control over their own treatment and ultimately control over their own life.
The point that I really wanted to make is that the treatment of this physiotherapist has had a traumatic effect on my life. As an adult there has been occasions when “professionals” have questioned some aspect of my disability and have said that I should be able to do more for myself. In these situations I found that I would instantly get a sickening nervous feeling in the pit of my stomach and I would get very defensive. This automatic reaction was totally out of my control. It happened a few times before I worked out why I was feeling this way. It was how I felt as a five, six, or seven year old boy with an overpowering physiotherapist forcing me to overcome some aspect of my CP. I believe that this has left emotional scars that can be triggered even today given the right situation. I know physiotherapists have a job to do, but when treating young children they must remember that above all the child needs to feel loved, safe and cared for, otherwise they may fix the physical condition, but in the process cause untold psychological and emotional damage.
As you can see having CP is a life long journey and there is so much that I could say, but I can only give you a glimpse into a life with CP. One life changing time was the realisation in my early twenties that if people have a problem with my disability, then that is their problem and not mine. This was a very liberating realisation. Another liberating discovery was the social model of disability, which basically says that it is not the disability that is the problem, but it is the society or environment that we live in which is the problem. For example, it is not my CP that prevents me from entering a building with a dozen steps at the front entrance, but the fact that there is not a ramp or lift at the front entrance does prevent me from entering the building. This is opposed to the medical model of disability, which basically says that it is the medical condition (in my case CP) that is the problem to be fixed.
All my life I have had to cope with people’s ignorance regarding my disability. People often stare at me and I can become the centre of attention for children as they notice that I am different. I have travelled abroad and this problem seems to multiply ten fold in other countries. When I was in Turkey and Greece for example it was obvious that they were not use to seeing disabled people in wheelchairs out and about. In fact I do not think they would have paid more attention to me if I had two heads. Other cultures also associate a wheelchair and my level of disability with being poor and helpless. I have a drink holder fitted to my wheelchair and when I have been abroad people would often drop money into it has they walk by me. Believe it or not, this has happened on very rare occasions in the United Kingdom too. I have developed a fairly thick skin over the years and now quite often I do not notice people looking and staring unless it is blatantly obvious. I think that the people with me are more aware of it than I am.
The other ignorance that I am much less tolerant of is people’s assumption that if you have poor control over your body and a speech impairment, then you must be intellectually subnormal. This ranges from people completely ignoring me, the old “does he take sugar” scenario, to talking to me like I am a five year old child. This really infuriates me, and I can encounter this anywhere and everywhere. Even health care professionals can do this and you would expect them to know better. I do not know why people can not treat people with disabilities the same as anyone else.
Another aspect of my CP that affects my daily life is the fact that I am unable to feed myself. Even being fed by someone, I am a slow eater. It takes a lot of coordination to chew and swallow food without dropping it or choking on it and coordination is definitely not my strong point. As for talking and eating at the same time, experience has taught me that this normally ends in a messy disaster, so I do not try this anymore. People who know me well also know that it is not advisable to make me laugh while I have a mouth full of food otherwise they may well end up wearing it!
I was made to feed myself at school for a while. This made the tricky process of eating into something fairly tortuous. Chasing food around the plate, food going all over the table and me, stabbing myself in the mouth, and occasionally getting some food actually in to my mouth; oh what a great way to enjoy your meal, I think not! Also there were certain foods which were impossible like spaghetti or peas. And the physiotherapist used to really annoy me by separating things out. For example if the pudding was sponge cake and custard, I was presented with a bowl of dry sponge cake that I had to feed myself with, then afterwards a care assistant was allowed to feed me with a bowl of custard as this was deemed too messy for me to feed myself with. This totally ruined a very nice pudding, who wants to eat dry sponge cake followed by a bowl of what is cold congealed custard by the time I got it. And I knew damn well that the physiotherapist would be enjoying her own hot sponge cake and custard that same day and I used to think that was so unfair. Sometimes the care assistants would take pity on me and feed me most of my meal, however they would then get into trouble from the physiotherapist when she found out what they had done.
For me being fed is the only way I stand any chance of enjoying my food. Trying to feed myself just makes the whole process of eating too difficult and unbearable. It does not bother me that I have to be fed as it is all that I have known for most of my life. I guess that it does limit my independence in that you can not go for more than a few hours without eating something, however I see this as just another aspect of having CP. I do not know how people feel about feeding me, especially in public places, but generally I find once people get to know me they are happy to help me out in this way, so maybe it is not such a big deal after all.
I find that my CP can be effected by many things for instance the weather. I certainly ache more in winter and the cold can be a real issue. When I get cold my muscles tense up and become more jerky and harder to coordinate. When I get really cold I can’t do anything other than shiver uncontrollably. Another thing with my CP is that the more I try to do something or think about the movements I want to make or not make, the worse the outcome is. For example, putting a key in a lock, on very rare occasions I can do it in one go. This happens when I am doing it subconsciously and thinking about something totally different from putting the key in the lock. As soon as I start thinking more about trying to get that key in the lock, chances are that I will not do it first go, and if I have not done it by the third attempt then it could take up to six goes before I get there. Obviously if I try enough times, by the laws of probability I will get the key in the right place eventually, but that comes down to sheer determination rather than a sudden improvement in my coordination.
This may all sound a bit negative and this is because I have focused on my disability rather than life as a whole. I would not say that living life with a significant disability is easy, but neither would I say it is all bad. I believe in making the most of the opportunities that life presents to me.
I know that this will seem alien to many people, but I am a committed Christian. I believe in a living God and He has a purpose for my life, that there is a greater purpose to the trials of life. This gives me daily strength to know that I am not alone in whatever situation that I find myself in and that I have a God who will never leave me. “For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” This is my favourite Bible verse.
I do not see any conflict between being disabled and being a Christian; in fact I do not know how I managed to cope without the knowledge of the existence of God before I became a Christian. You see without God what is the purpose of our existence? I once heard someone say, "We're born, life is a bummer, and then we die". If this is the best we can hope for then I think I might throw myself under a bus and avoid the 'bummer' part of life.
However, with God there is so much more to live for and so much to look forward to in the future. Once we accept Jesus as our one and only saviour, we receive so many promises from God, which appear in the Holy Bible. I have taken a few quotations from this book to illustrate my beliefs. When life gets difficult I believe that, "The LORD is a refuge for the oppressed, a stronghold in times of trouble.” There is a better place prepared for me in Heaven, "In my Father's house are many rooms; if it were not so, I would have told you. I am going there to prepare a place for you." and "He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away." I believe that I live in a fairly messed up world in a fairly messed up body, but this is not all there is to life. I have included this because it puts my life and disability in to a much bigger context. This gives me great comfort and support for the here and now, and great hope for something much better for the next life to come.
Written: July 2011.
© Copyright 2012 Steve Smith