I got news this week that I am due for, quite possibly my last ever treatment at the Nuffield Orthopedic Centre. I figured this merited a blog, least so I can express my views and give insight on what it is to have Cerebral Palsy, originally known as Little's Disease. For why it used to be called Little's Disease, please refer to the Wikipedia entry here.
A history lesson
For those of you that don't know, I was born 11 weeks early, on December 10th, 1988. I guess as a baby I didn't like my mother too much and just desperately wanted to get out, eager to experience the world! (joke) Cerebral Palsy can occur shortly before, during birth, or shortly after birth. Being born so early I was whisked away by doctors from my mother and put into ICU (Intensive Care Unit), where I remained for some time. My mother has told me stories that she noticed a difference in my leg length difference. Some two days after I was born, I had a 'bleed on the brain', causing a stroke at just two days old.
(Years later, my mother would join the stroke crew and from observing my disability-inspired adaptation techniques, would cope during her rehabilitation period taking a leaf out of my book!).
This stroke affected my left side, mostly my left arm and leg, causing mobility difficulties in walking, and impaired use of my left hand - much like Jeremy Beadle in a sense. I would through my baby days, go through many operations including a Shunt operation leaving a visible scar. This being something I would not see myself for 20 years, after my Britney inspired episode:
I also went through many operations, and the future for me was unclear - whether I would be mentally intelligent was not certain, whether I would eventually walk, permanently require a colostomy bag, and the question eventually rose in a battle whether to send me to a Mainstream school. I feel as if I have confounded expectations, but according to one Philosophy student, this is questionable. The Question for him, however, is can we ever be sure of anything? There were also times the late Dr. Hope had broke the news to my parents that I had gone to live with the angels. It would also appear, that I am immortal, or for those Metal Gear Solid enthusiasts amongst you, have increasing, incredible healing powers on a par with the character Vamp.Obviously I survived, and I have surpassed any expectations anyone ever had of me - including being nominated for the Global Young Leaders Conference in 6th Form, a University Interview at the University of Oxford: Keble College - 3As at A-Levels despite having the worst attendance of all time, receiving awards for my excellence at College for my work in History and Religious Education, being elected for a student at a high school where I was quiet obviously an outcast - at Painsley Catholic College. So you think everything looks rosy for me, no?
Despite my achievements in life, things seem as an 'epic fail' at times. Things have gone downhill as of late with my choice of University, attempting to live at University and not perserving, but that is the story of my life, really. My disability impacts most aspects of my life whether it is visible to others or not. The knock on effect of Cerebral Palsy from birth has meant I have gone through extensive, frustrating physiotherapy in my childhood, a loss of physical prowess with my peers since adolescence, and ongoing, admitting continuing problems with personally accepting the disability as a part of me. Usually with a disability there are additives that are undesireable, disabilities rarely come on their own. I am actually required to wear hearing aids but for cosmetic reasons and paranoia, I don't. They just don't look good and well, I don't want to be seen as an invalid. I feel like one at times, but in my mind, I know I'm more than that. There are some people who like to acknowledge my difference to others, maybe they are old-fashioned and comparing me to somebody else, or just ignorance and see me as an easy target.
I have been the target of bullying in my school years because of my disability, particularly at Painsley Catholic College and my primary school, St. George & St. Martin's. In the first case, in a typical South Park-esque "cripple fight" fashion, the bullies befriended another disabled lad seemingly to use him to be spiteful and pick on me. I would later learn, years later, that they turned on him after I left. I left because of the trauma I suffered from the bullying and missing my true friends from Primary School - who I later rejoined at St Margaret Ward. Much can be said for the difference between the two high schools, Painsley being academically better and it has been supposed I would have a better education had I gone there. But at Margaret Ward, I made friends - ironically enough discarding most of the original friends I had gone to rejoin. I also become vindicated in my efforts in 3As after following on into their college, so the education question of Painsley became irrelevant at that point.
Since University, things went rather sour and my disability to me became really apparent, with having to adjust to living alone without assistance. Like most students, it's quiet the transition period but for me, more so. I had to cope with shopping on my own - lugging back a weeks worth of shopping (including my week's cola addiction!) was quiet the feat but things were tough. My body is not quiet geared up on the level my mind is, and it is something that is natural and a part of having a disability. Going to lectures, coming back, not sleeping brilliantly in my 3/4 length of a single bed and having to do the work, plus the regular household tasks - being clean, cooking, washing was all a bit too much. Like most students in halls I have to cope with cohabiting with many people. In my case at the University of Manchester it was with 8 people in my flat, I have heard reports at other Universities it can be as many as 30 to a kitchen, and at my university some 500 residents at Weston Hall (where I stayed) would have to share just 8 washers and dryers (ample, maybe but there always seemed to be quiet the queue). Stress, tiredness, frustration became the norm because I couldn't keep up and could rarely find energy to go out. It has meant, by proxy, my disability is the reason I have not made many friends at University - and my social choices and co-dependence on the few people I had at that time (not any more, sadly) - meant my involvement in the Philosophy Society has grinded to a halt as I had moved home in December 2007 and it became an inconvience to take part because I required time to study.
I have not, as a consequence, had your average Student life. Though it does give me some comfort that there appears to be many people who do commute and keep their network of friends from school when they go to University rather than seek out new frontiers. All these difficulties that I have had are many reasons why I find it hard to socialize, make new friends - not to mention some people's strange reactions that a stranger is trying to talk to them when I say hello (It's all a bit weird, I think).
Though I think that my experiences with my disability and all the extra dimensions it takes on could merit an book, this is it in a nutshell. It is not insignificant therefore, these important operations, including the next and possibly the last one to come up, because it gives me a sense of increased self-esteem and sense of renewed identity - see my defence of my name change here on 'philosophical grounds'. What I have offered here in this blog, is some empirical reasons, some factors that have led to this.
So what about the operation?
What I mentioned above some of the operations as a direct consequence of cerebral palsy. However, since then there have been a few procedures to help me retain my independence and standard of living. I remember when I was younger of going through an operation on my voicebox - I spoke like Rod Stewart because I shouted a lot - with a Bart Simpson doll in tow. (I wonder whatever happened to THAT!)
Also there have been other procedures, including botox on my thumb joint that was unsuccessful when I was 11 years old, and at the age of 14, major-level surgery to address the leg length difference to bring my leg lengths to a parity with one another. All this, and many appointments on the side with Brain scans, leg x-rays, have all been under the care of the doctors at the Nuffield and the John Radcliffe Hospital in Oxford where I was born. This operation to come will address the unsuccessful botox operation and address the "spasticity" of my left hand/wrist. Cruel to use that word perhaps, but this is the medical term.
A bit of useless knowledge for you - SCOPE was originally known as the Spastics Society until Spastic became somewhat a derogatory term. SCOPE is an organisation for those with Cerebral Palsy mainly, but also a charity to help those with other disabilities as well. So the term spastic actually applies directly to Cerebral Palsy, which is why I won't take that word lightly or any derivative of it, even if used in haste.
Back to the matter - with those operations, I am now at my final stage of physical self-realisation as I can possibly acheive - with an operation on the hand. I have overcome having to wear special shoes with a built-up heel on my left foot from pre-leg operation years, and now with this operation, I will be able to walk and hopefully not hide my left hand in public out of a sense of shame.
What's next?
So the Operation is pencilled in May 28th, provisional of course as it slots right into my summer exam period so there are things still yet to consider but things will become clearer as the results for the Spring Exams are released this coming Friday and then later in April with the publication of Exam Timetables. Still all things considering, I feel as if the operation will take precedence and I will take any possible affecting exams as a first sit in the resit period in August.
What will happen, I am told, is that my wrist will be set into place, and hopefully the thumb joint forced into place, all to be discussed at a Pre-Operative Assessment appointment in early May, complete with blood tests, urine samples and then afterwards, sampling the Real Ale of Oxford! So all looks promising.
Unfortunately, the recovery-hospital period is set for 3 days but I hoping since it is just my hand that I can be out sooner (I live one handed anyway!) so I can resume studies for any pending exams and celebrate with ridiculous amounts of alcohol in my Real Ale Haven, the Coachmakers Arms. As for the full effects to be shown and realised, I am not sure, probably a matter of weeks.
So this is all a moment, a day and a time for me to look forward to, I have been waiting 20 years for this, but as for the wider scheme of things, life in general, there is still the matter of University, and I'm setting a personal goal to pass my driving test in the summer so I can have a car ready for the September kick off of my final year at University of Manchester. The operation, though promising and something to look forward to and be finally at peace with, is just the beginning of a new chapter and a long journey.
Stay Tuned.
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Lucas, you have written very well, though I can't help but feel there is a sense of anger with you -v-cp! What you have to remember is this, and you have been told this a million times in your life. "You are here! You made it! Your sisters didn't. Unlike you, born very prem, but even earlier than yourself, they too at 26wks gestation had a fight on their little bodies, and it was obviously God's plan for better things. You have to remember how very very special you are to us, and I don't mind telling the world I once told the late Dr Peter Hope and his team at John Radcliffe Hospital Oxford, I didn't care if you grew another head on your shoulders, as long as you lived! Me and your dad had already lost Frances and Clare the same year as you were born in March, and just before I had conceived them had lost a baby too, only to be told at an emergency scan at 3 months. So when we found out we were expecting you, nothing mattered, as long as you were ok. I certainly couldn't stand losing a 4th baby within just over eighteen months! Life in 1988 was horrendous for us, and for the first few years following, as we wondered how life would pan out with your health. Not many baby's have gone through having 2 bleeds on the brain,and needing a shunt, (as your photos show). Because this operation was classified as less urgent than your 'nectrolizing entrocolitis' disease on your bowel, as you had poisoning in your blood system, a full blood transfusion and a flush of your small stomach was urgent with them fitting at the same time, an ileostomy bag. We let you go to theatre not knowing if we would ever get to hold you alive again! It was as dire as that! We knew the odds, but it was a life threatening operation, and you would have definitely have died had we not let them do it! Mr Green told us later he managed to salvege a short strut of ilium small bowel, and as you were a baby you would grow, and so would your bowels! You ended up with an ileostomy bag, fortunately only for 6 months, (I was the happiest mother in the world when they reversed the operation and you filled your first nappy and the nurse saved it for me to look at!!!!) Absolutely true! To me I was elated, it meant the reversal worked! once hunch we had got over for you, and with you. But we were warned that operation may have turned out to be a permanent removal of all your bowels...just depended how bad your necrotic bowel was when they opened you up!...apparently it was like sewing cling film the bowel surgeon, Mr Green at John Radcliffe told us. Dad & I spent the morning in the chapel at John Radcliffe praying all would go well!...who had the other 4 kids at home at the time, I can't remember!!!! I think it is no secret to your elder sisters and brothers that they took 2nd place in those early days, as we had no parents or grandparents we could turn to or family close by to help out....we relied solely on parishioners! Life was cruel...for you and us! You got over that but within a fortnight of that operation, the hydrocephalus, 9water on the brain, caused by the bleed on your brain) was swelling considerably, you were dosed up on diamorphine, as we were told off the neuralogist that you would be having probably severe headaches. Lumbar punctures on your tiny spine to tap off spinal fluid was done twice, each time you were severely sick...Anyone (Adult) who has ever experienced a lumbar spinal puncture they are very sickly and painful operations. For a premature baby to cope with it, you were just a miracle! The idea was to relieve the pressure as you were too sick to operate on, but desperately needed a shunt fitting. Eventually they did it at the Radcliffe Infirmary Oxford. Mr Carr the Neuroligist who conducted the operation came out to our home in Temple Rd at 10pm the night beofre the operation to explain the dangers to us. He went into graphic detail, (because I wanted to know how he'd do it), this is not a horror story, and dad will read this and will correct anything that isn't right, but this is very accurate Lucas, it is etched in my brain and heart what you went through! Mr Carr told us he would use a drill to make a hole through your skull and fit the shunt to relieve the water on the brain. It was to drain in your chest cavity as the normal procedure, (apparently), is to fix in the stomach walls, but as you had only just had surgery 2 wks earlier, a risk of infection and it flowing back up the tube into your brain, so it was decided to put it in your chest cavity. That's what the approx 3" scar is above your right breast bone. You can see clearly the tube to this day running down your neck. I asked when would it be reversed? He told us that there is many a soldier walking about with bits of shrapnell in their head, and it is safer to leave it once it has done its job, than to risk further infection removing it!...That nearly happened when you were 11 wks old as you had an abcess form in your neck and your neck disfigured with swelling, strong antibiotics once again saved your life!
ReplyDeleteYou had your appendix removed at the same time as your bowel op too! and ended up with no belly button and a huge scar right across your stomach and a small scar where your ileostomy was and where your long line was too in your stomach...( a long line is a permanently sewn in tube whilst you were in hosital to adminster your drugs, so they didn't have to keep stabbing you with sharp needles! you have one on your right inner ankle too). In brtween this, I had been expressing my milk on an Egnell Breast Machine for 11 solid weeks and taking it up to the hospital for them to drip feed you 1 mil, 2 mils, 3 mils etc, but eventually you took sick again, and was diognosed as suffering with Lactose Intolerance. You had to have some awful, (I can smell it now, it was pungent)! It was called Progestamil Formular, only available on prescription, and chemist had to order it in for you. All that effort of keeping my milk going was to no avail. That had been hard going, I was stressed, I had no baby to stimulate the milk, and I'd be at home expressing it on the machine which took 10-20 minutes, then the same length to drive to the hospital too, all to no avail!....James your middle brother was a fan of breast milk being breast fed for 18 months! I was a NCT (National Childbirth Trust) keen breast feeding mum....but Disappointment you had to have this awful stuff, at least it nourished you and kept you alive...That's all that mattered.
I got my first cuddle on Christmas day, holding you complete with wires sprouting out of you from every direction....2 weeks is a long time for a mother to hold her baby for the first time.
When Dr Hope told me and your Dad, "He's turned the corner (10wks), he's going to make it, but I am afraid, he's never likely to play football for England" That's what he said, and bombarded us too that it could be 2 yrs before we'd know for sure just how much your disability has effected you, and couldn't predict if you had been affected mentally....obviously not!
You stood in a flexi stand strapped up till you were 14 months old. You had many many hospital trips and physio, and hydrotherapy treatment, conductive eductation at the Omerod, and assessments at HEPAC, (Hugh Ellis Pedeatric Centre). You were 20 months old when HEPAC told me and your dad after spending Monday to Friday 5 days of intensive specialists looking at you, we stayed at the centre 9-5pm each day and had interviews with the specialists, bowels, brains, cp specialist,Pysciatrist as you had behaviour problems, speach specialists, hearing specialists, everyone who had ever worked with you were there on different days. It was a centre that families went to for diagnosis and help. It was then that we asked them had you got cerebral palsy, we had waited nearly 2 yrs for a diagnosis!
My aim and still is today was not to treat you any different, and that meant choosing (and fighting) for you to go to a mainstream school. Some experts in the field of education and your welfare thought you may be best going to a special needs school, but we were adament we would get you walking, we would make you hard, and not wrap you up in cotton wool...you see Lucas, you had already proved to us time and time again, you were not as delicate and fragile as we all thought...you were a tough nut! You definitely are a walking miracle, and so if you have got to go through life one handed as you put it...its a very, extremely small price to pay for what you have been through. You do have dignity, brains, sense of humour, a heart of gold...please Lucas for your mum, don't dwell on what you haven't got, be thankful for what you do have! You have defeated many many consultants and specialists and amazed them, but we your mum and dad had faith in God that he would pull you through...and he has! We are so proud of you, and that's why i have posted this blog to tell the world you rant and rave, but you have been through hell and back in your life time, and come out on top! Well done! Love you, Mum xxxx
Man that was a read! Good luck to ya in the op. When you comming visit me ffs lol!
ReplyDeleteDespite going to school with you for so long I dont think I ever realised just what you have gone through!! You have always been determined to do everything everyone else has, and you dont just do it, you do it better. Good luck with the op! Hope everything goes well x
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