Buffet Island in Newcastle-under-Lyme. Nice meal, though I was ill after!
Happy bdays Jim and Kate!
They got a nice cake all to themselves!... And they are heading off to the US, Chicago soon! I am jealous....
-- Post From My iPhone
Sunday, 8 March 2009
Birthday Boy and Girl
Buffet Island in Newcastle-under-Lyme. Nice meal, though I was ill after!
Happy bdays Jim and Kate!
They got a nice cake all to themselves!... And they are heading off to the US, Chicago soon! I am jealous....
-- Post From My iPhone
Saturday, 7 March 2009
Before and After - Cerebral Palsy Leg Surgery Photos
This blog has been one of my intentions since setting up these series of blogs. With my DVD footage of my Gait Lab assessments on my walking pre- and post- operation on my leg 6-7 years ago I can finally share.
A quick background just to understand why I had the leg operation 6 years ago in 2003. I was born with Cerebral Palsy. The type that I had involved one leg (indeed one side of my body) being shorter than the other, meaning lesser growth, mobility in that side, etc. In my case it was my left side.
I've often wondered whether people can tell with my walking being any "different". Anyway, part of the operation meant having tests at the Gait Lab. I'm a bit uncomfortable watching it to be fair but I have saved a couple of pictures just to remind myself (before and after). Just something to share:
Taken 22nd August, 2002.
I naturally stood like that, so you can just imagine what the walking was like!
Taken 11th February, 2004.
Medical Science can be pretty impressive!
A quick background just to understand why I had the leg operation 6 years ago in 2003. I was born with Cerebral Palsy. The type that I had involved one leg (indeed one side of my body) being shorter than the other, meaning lesser growth, mobility in that side, etc. In my case it was my left side.
I've often wondered whether people can tell with my walking being any "different". Anyway, part of the operation meant having tests at the Gait Lab. I'm a bit uncomfortable watching it to be fair but I have saved a couple of pictures just to remind myself (before and after). Just something to share:
Taken 22nd August, 2002.
I naturally stood like that, so you can just imagine what the walking was like!
Taken 11th February, 2004.
Medical Science can be pretty impressive!
So you can notice the difference, standing. But I still am very conscious of my walking and my old habit hasn't completely died - sometimes I do have to remind myself, to walk heel first. Still, things are a lot more comfortable now. You will also notice the bobbles stuck to me - these were so they could create computer generated images of me walking. Sadly I couldn't get hold of THAT data!
I remember before the operation looking forward to being able to wear "normal" shoes - rather than ones made specially with a heel build to compensate for the leg length discrepancy. Now I'm sick of having to buy shoes as often as I do!... even if they are so much better.
Moral of the story?: There's always something to moan about...
I remember before the operation looking forward to being able to wear "normal" shoes - rather than ones made specially with a heel build to compensate for the leg length discrepancy. Now I'm sick of having to buy shoes as often as I do!... even if they are so much better.
Moral of the story?: There's always something to moan about...
Thursday, 5 March 2009
Dissertations, Relationships and Moral Dilemmas
At Keele University, working and a girl comes over, asking me to complete a dissertation questionnaire for her friend on the impact of family relationships on your own personal, romantic relationships. And if you weren’t currently in a relationship, you had to relate to your most significant relationship. Not going to say anything too personal, but it was so entertaining for me I wanted to share. Yes, I know it’s a bit weird.
This proved to be quite the moral dilemma for me! But it was fun, I like filling in forms. I came to the conclusion that no matter how bad things may get, or end with a romantic relationship, they shouldn’t influence what you think in context of the relationship itself. Of course things are different after the relationship, but it’s what happened during that’s more important. If said relationship ends, learn lessons from it and get over it.
The questionnaire was stimulating, though asking some questions that can cause a bit of bias post-relationship. Still, looking back, I can’t say anything bad, proud of what was butI’m all over it now. Some of the questions even made me laugh.
As always, dissertation questionnaires are anonymous and confidential. It made my day though, that’s the important thing.
Now back to work…
This proved to be quite the moral dilemma for me! But it was fun, I like filling in forms. I came to the conclusion that no matter how bad things may get, or end with a romantic relationship, they shouldn’t influence what you think in context of the relationship itself. Of course things are different after the relationship, but it’s what happened during that’s more important. If said relationship ends, learn lessons from it and get over it.
The questionnaire was stimulating, though asking some questions that can cause a bit of bias post-relationship. Still, looking back, I can’t say anything bad, proud of what was butI’m all over it now. Some of the questions even made me laugh.
As always, dissertation questionnaires are anonymous and confidential. It made my day though, that’s the important thing.
Now back to work…
Why I won't vote Labour at Student Union Elections
The University of Manchester Student Union elections are on Tuesday 10th March until Thursday 12th March. You might ask, even the politically active among you - what the point is in voting at a Student Union election. There is a fundamental point. Without the student representatives at your student union, many things that happen during your time at University would not come to fruition - including the landmark (and extremely helpful from a personal standpoint), 24 hour opening library times at the University Library during examination periods. The hard work of these students working on your behalf benefits your own university education in more ways than one.
There is however, another point to make. Yes, it is an election, so you could be forgiven for getting all political at a time to exercise a democratic right to vote in such an election. But the work of the student union is about education, not politics. It is about pragmatics, about doing what is right and what is going to benefit your education the most. It is not a place for party politics and to choose a candidate on the basis of what political party society they have their endorsement. In the West Wing, Season 6 at the Democratic National Convention, candidate Matthew Santos argues: “Choose someone who shares your ideals, your hopes, your dreams” - much like Barack Obama in his campaign for ‘Change’ in 2008. That is what voting should really be about, in general elections and student union elections.
More importantly, we should reward the campaigns of those candidates that fight for the student cause: better tutor-student contact, better libraries, ‘friendlier’ student unions. Those that work hard to win your vote are the ones that deserve to win, not the ones that will get ‘block voters’ from those of political party societies.
Every vote counts in these kind of elections with such a small electorate, and even more so with the introduction of online voting. Like in a general election, the main political parties that appeal to their base and yet conquer the middle ground are usually the victors. In student elections, it is easy to vote for somebody because they are a ‘Labour candidate’, without knowing what they are actually going to do for you. Party affiliations in such elections are therefore merely cosmetic, and they are not important in the grand scheme of things.
This is why you should look at the greater picture - not by examining manifestos but knowing that who you vote for will do their hardest for you because they worked hard for your vote, and you know from a glance, what they are for. This is why I will be voting for Cat Taylor (pictured, above) for Humanities General Council Member (University of Manchester), among others. Not out of friendship but because she personally took the time to win my vote. Party ties are insignificant at such a personal and intimate election where change can happen. Your vote at your union, at your university, counts.
Wednesday, 4 March 2009
Coachmakers Arms - Copper Cascade
A nice Scottish drink. Brewed by Stewart Brenning, Copper Casade : 4.2% ABV
*****/5 | But only because I earnt it!
-- Post From My iPhone
'Seize the Moment'
'Flash' Gordon Brown gave a speech to the US Congress calling for the US to seize the moment on the economy woes of our time.
Nick Robinson claims that this is not Brown's colgate moment with Obama, yet the Guardian calls it the crowning moment of Brown's political career.
Still with Brown's economic credentials, if the US actually listen to Brown, and do not vote for more protectionism and a 'buy American/made in America' clause, then maybe this influence of 'Brown knows' could hit home back here in the UK and thus the prophecy of Mandelson can be realized:
Labour can win a 4th term.
Nick Robinson claims that this is not Brown's colgate moment with Obama, yet the Guardian calls it the crowning moment of Brown's political career.
Still with Brown's economic credentials, if the US actually listen to Brown, and do not vote for more protectionism and a 'buy American/made in America' clause, then maybe this influence of 'Brown knows' could hit home back here in the UK and thus the prophecy of Mandelson can be realized:
Labour can win a 4th term.
Tuesday, 3 March 2009
Accrington Stanley v Port Vale: Postponed!
Stuck in a chippy in Accrington after getting here and learning the game has been called off due to a waterlogged pitch!
I am soaking wet.
Epic fail, anyone?
-- Post From My iPhone
I am soaking wet.
Epic fail, anyone?
-- Post From My iPhone
Monday, 2 March 2009
Cerebral Palsy: Arbitrary like eye colour?
Francesca Martinez, comedian (pictured)
A fellow cerebral palsean has remarked that Cerebral Palsy is no different or more important than something such as eye colour. She refuses to be limited by her mild form of CP, and has remarked on something that I cannot agree more with here:"No wonder people are still so nervous about disability, and I can only conclude that names for them are hand-picked from a tombola of words most likely to induce fear and panic. Just stick your hand in and pull one out. Syndrome. Disorder. Cerebral. Palsy. Disease. Spina. Bifida. The rest is easy. Take two words, mix them together, apply to one human being and, hey presto, you've got a ready-made freak. Labels are powerful tools that shape attitudes and tell us much about how the things they are describing are viewed. I have spent my life trying to extricate myself from the label that was plastered all over me at birth. "
This is probably very true: from my own experience, I have been rejected for interviews at jobs where they have been looking for applicants - which I have put down to CP (Asda being the main example here). It's demoralizing to the point where you just don't really want to bother, really. Perhaps a "normal" manual job like that is out of my reach.
Josh Blue, who also has CP, jokes in the video below that the reason he is a stand-up because he didn't have much choice to be anything else. "What was I was gonna do, be a traffic cop?" *flaps arms around*
You can read the Francesca Martinez article here - it also addresses the politicisation of Cerebral Palsy by David Cameron and his son Ivan, who recently passed away. Plus a good personal account.
Sunday, 1 March 2009
Sleepless Nights
According to the Times, CHILDREN who are allowed consistently to stay up past their bedtime watching television or playing on a computer are at risk of late-night sleeplessness for the rest of their lives.
Read the full article here.
All I can say is: story of my life. If this is true, Championship Manager 2 ruined my life.
I still feel the pinch now at times!...
Read the full article here.
All I can say is: story of my life. If this is true, Championship Manager 2 ruined my life.
I still feel the pinch now at times!...
New Deals....
FDR's New Deal....
and now talk of a Brown/Obama New Deal....
so does that make it a B.O. New Deal?
I wonder....
National Health Service for America? (US Health Care)
The title, though far fatched, is a step in the right direction with Obama's intended reform of the American Health Care System.
In Michael Moore's filmn Sicko, almost fifty million Americans are uninsured and those who are covered are often victims of insurance companies. See Wikipedia entry if you have not seen the film, here.
As Justin Webb points out, it's been promised by Carter, Clinton, even Teddy Roosevelt.
The natural person for health secretary who I would have liked, though perhaps too radical for some Americans to contemplate after the scandal in the Clinton years would have been dear Hilary, now US Secretary of State.
Instead, Obama has plumped for Kathleen Sibelius, as his first choice Tom Daschle has been investigated over his tax activity.
Whatever, whoever is the face of healthcare reform in America's change administration, it is only natural to agree with Webb that paying $629 for"a day of education about diabetes" is indeed, madness.
This, I think beats any privatized-only medicine system argument in the United States considering the rings that the insurance companies will have you run around before they pay your hospital bills. Look at the UK system - you can have your choice of doctors here, where you can go for treatment: I myself am a good example - I travel 100+ miles for my orthopeadic surgery. And at the end of it all, is there really any difference between paying for medical insurance and paying a national health insurance tax?
It's still money spent. And the lesson to learn, is that you spend a lot less to get the treatment you want as well - even breast enlargement and sexual reassignment surgery are offered on the NHS, plus prescriptions. In America, you will pay a hell of a lot more to receive something that is a human right: access to medical care. There should never be a conflict over paying your doctor for treatment and their duty to the hippocratic oath, should there?
So what's next on my to do list?: Watch Sicko again...
In Michael Moore's filmn Sicko, almost fifty million Americans are uninsured and those who are covered are often victims of insurance companies. See Wikipedia entry if you have not seen the film, here.
As Justin Webb points out, it's been promised by Carter, Clinton, even Teddy Roosevelt.
The natural person for health secretary who I would have liked, though perhaps too radical for some Americans to contemplate after the scandal in the Clinton years would have been dear Hilary, now US Secretary of State.
Instead, Obama has plumped for Kathleen Sibelius, as his first choice Tom Daschle has been investigated over his tax activity.
Whatever, whoever is the face of healthcare reform in America's change administration, it is only natural to agree with Webb that paying $629 for"a day of education about diabetes" is indeed, madness.
This, I think beats any privatized-only medicine system argument in the United States considering the rings that the insurance companies will have you run around before they pay your hospital bills. Look at the UK system - you can have your choice of doctors here, where you can go for treatment: I myself am a good example - I travel 100+ miles for my orthopeadic surgery. And at the end of it all, is there really any difference between paying for medical insurance and paying a national health insurance tax?
It's still money spent. And the lesson to learn, is that you spend a lot less to get the treatment you want as well - even breast enlargement and sexual reassignment surgery are offered on the NHS, plus prescriptions. In America, you will pay a hell of a lot more to receive something that is a human right: access to medical care. There should never be a conflict over paying your doctor for treatment and their duty to the hippocratic oath, should there?
So what's next on my to do list?: Watch Sicko again...
Analytics for February 2009
December 2008
January 2009
February 2009
For those number crunchers about you...
5 points to make about this month:
1) Visitors up 43% according to Google Analytics
2) Top blog this month is the personal history of mine on Cerebral Palsy - read here , in second place is the blog on Buddhism
3) Blog themes have been a success - many of you seem to be using and clicking them. The Real Ale blogs aren't quite as popular, but it's a silly little hobby of mine!
4) Manchester is winning in the visitors from cities stakes - but most readers come from the UK - with plenty of 'bounces' from places abroad including Thailand, United States, Saudi Arabia and the Phillippines!
5) It would appear search engine hits are down by 34%, but interestingly the only search engine used is Google by people who reached the blogs through search engine.
Goals: Better, more search-engine friendly blog titles to generate hits, and hopefully somehow get these 'bounces' into... 'not-bounces'.
Thank you all for reading and coming back and viewing the website - I hope you keep reading and giving feedback.
Saturday, 28 February 2009
Match Report - Port Vale v Luton Town, 28/02/09
Picture (Free Kick Leading to John McCombe goal, 1-0)
Port Vale 1 - 3 Luton Town
Bad defending and concentration just before half time drew the scores level and Luton had the impetus and momentum before romping to a 3-1 victory.
The game was marred by Vale fans demonstrations to get "Glover Out", and a defeat seemed inevitable after the first half hour once Luton's technical superiority shone through.
It was a deserved victory but symbolic of a sad state of affairs over both clubs: Vale - a club in shambles, lack of on-the-field competence who will only survive this season thanks to points deductions given to Bournemouth and Luton (a whopping 30 points for Luton). Luton deserve to stay up but this requires a miracle having just +5 points and seemingly resigned to non-league football. For Vale, this reality seems all too inevitable if Glover survives the season and through Christmas, come May 2010 Vale could be staring into the abyss.
---
In other results, Liverpool have seemingly lost the title race with a shocking 2-0 defeat to Middlesborough, and in local football, Crewe romper to a 4th succesive win with a 4-0 win away to Brighton.
Tomorrow, Stoke face Aston Villa, who they beat early on in the season at the Britannia. In the reverse fixture it promises to be close but with Villa's form they should scrape through. Manchester United face Tottenham Hotspur in the Carling Cup final. A win for United and a quintuple on the cards? One wonders....
-- Post From My iPhone
Archbishop Vincent Nichols Pastoral Letter on Disability
In a letter to be published on the weekend of March 21/22, Archbishop Nichols has addressed on Disability.
In it, he importantly points out that only 8% of disabled people actually are required to use a wheelchair: we need to recognise that disabilities come in many forms, not the stereotypes we might typically subscribe to a disabled person.
He writes... "Remember that those with disabilities tell us that the barrier which most often makes them feel unwelcome or excluded is that of peoples’ attitude. This is something we can change."
This is especially true, think of bullying, discrimination, perhaps people's general attitude to one another: people may say things in jest about just about anyone (talking negatively for example behind someone's back), but is this the example to set I wonder? Not for the disabled, not for children, not for anyone.
There is an important quote he uses to illustrate that those disabled are anything but unequal, lesser than other humans but the same as everyone else:
‘Let us keep those with disabilities at the centre of our life. Let us treasure them and recognise with gratitude the debt we owe them. We begin by imagining that we are giving to them; we end by realising that they have enriched us.’ (Pope John Paul II)
----
I would invite all those in the Archdiocese of Birmingham and beyond to read this letter when published but think about the deeper meaning, the underlying tone, the message Vincent Nichols is expressing to us, Catholics and non-Catholics alike: We are all human beings, all created equal, and we must strive to give to any and everyone, equal chances of opportunity for spiritual, moral and personal development. If we didn't afford these opportunities to those less well off, it would be us that are disabled.
In it, he importantly points out that only 8% of disabled people actually are required to use a wheelchair: we need to recognise that disabilities come in many forms, not the stereotypes we might typically subscribe to a disabled person.
He writes... "Remember that those with disabilities tell us that the barrier which most often makes them feel unwelcome or excluded is that of peoples’ attitude. This is something we can change."
This is especially true, think of bullying, discrimination, perhaps people's general attitude to one another: people may say things in jest about just about anyone (talking negatively for example behind someone's back), but is this the example to set I wonder? Not for the disabled, not for children, not for anyone.
There is an important quote he uses to illustrate that those disabled are anything but unequal, lesser than other humans but the same as everyone else:
‘Let us keep those with disabilities at the centre of our life. Let us treasure them and recognise with gratitude the debt we owe them. We begin by imagining that we are giving to them; we end by realising that they have enriched us.’ (Pope John Paul II)
----
I would invite all those in the Archdiocese of Birmingham and beyond to read this letter when published but think about the deeper meaning, the underlying tone, the message Vincent Nichols is expressing to us, Catholics and non-Catholics alike: We are all human beings, all created equal, and we must strive to give to any and everyone, equal chances of opportunity for spiritual, moral and personal development. If we didn't afford these opportunities to those less well off, it would be us that are disabled.
Friday, 27 February 2009
Bookmarks and Subdomains - Errors now fixed.
Apologies to all those attempting to use the Subdomains associated with lucasweatherby.com
This should now be fixed.
Please see here for a complete list of alternative web addresses for the mini-blog themes that you may wish to use and for information on how to bookmark various parts of the LucasWeatherby.com network.
Thank you for reading
This should now be fixed.
Please see here for a complete list of alternative web addresses for the mini-blog themes that you may wish to use and for information on how to bookmark various parts of the LucasWeatherby.com network.
Thank you for reading
Carling Cup 2009
Manchester United and Tottenham Hotspur square then this weekend in the Carling Cup final.Mark Lawrenson seems to think United will win 1-0
And while I think he is right, I don't think Harry has quite what it takes to beat Fergie this time round. In the last Cup final between two sides that these two managed, United came out on top.
And I'd expect them to again... but could this be the start of a quintuple season for the Red Devils?
Questions of Truth
I found this blog a bit interesting: http://blog.talkingphilosophy.com/?p=708
It is about a review of a book, Questions of Truth.
"Questions of Truth vividly illustrates how, if you are sufficiently committed to a belief, it is always possible to interpret other facts to fit in with it. It all depends on which of your beliefs you take to be non-negotiable. “The materialist takes as basic fact the existence of matter,” they say, somewhat caricaturing the atheist position. “The theist takes as basic fact the existence of a divine creator,” they add, accurately describing their own. From this starting point, it is clear there is nothing which could persuade the theist otherwise."
The only thing that I have to ask if: If you are willing to see some parts of your faith as negotiable, then should or can you really subscribe to that faith at all?...
It is about a review of a book, Questions of Truth.
"Questions of Truth vividly illustrates how, if you are sufficiently committed to a belief, it is always possible to interpret other facts to fit in with it. It all depends on which of your beliefs you take to be non-negotiable. “The materialist takes as basic fact the existence of matter,” they say, somewhat caricaturing the atheist position. “The theist takes as basic fact the existence of a divine creator,” they add, accurately describing their own. From this starting point, it is clear there is nothing which could persuade the theist otherwise."
The only thing that I have to ask if: If you are willing to see some parts of your faith as negotiable, then should or can you really subscribe to that faith at all?...
Thursday, 26 February 2009
Blog News - Bookmark themes!
A bit of website/blog news....
Since I have noticed some seem to take use of the 'blog themes', I have decided to make it easier for you to remember the website addresses so you can visit them whereever you are. I have set up subdomains for each of the blog themes.
Though currently you can subscribe to my blogs with your RSS reader it will give you all the blogs, not ones in individual categories. This is unlikely to change as it means maintaining separate bloggers, easier to just use the label function for now.
To filter blogs by labels - I'm going to do this monthly from now on, just visit:
index.lucasweatherby.com - FILTER BLOGS BY LABELS
To get around the RSS reader problem - I know some of you use this feature, just bookmark the relevant blogs that you like to your web browser by pressing CONTROL + D on your Windows PC or Laptop (or COMMAND + D if you are like me and use a Mac). Unfortunately you won't get notified if there is a new blog in your area, but I thought you might find this helpful and you can always check and leave.
Finally, if you visit www.lucasweatherby.com you will come across a snazzy little splash page that features a preview of the latest blog, my twitter feed, and a bit of information and some pictures. Feel free to check it out.
If you have any ideas for the website, even if its not blog related, feel free to make suggestions and email me at:
mail@lucasweatherby.com
That's all, folks!
Since I have noticed some seem to take use of the 'blog themes', I have decided to make it easier for you to remember the website addresses so you can visit them whereever you are. I have set up subdomains for each of the blog themes.
Though currently you can subscribe to my blogs with your RSS reader it will give you all the blogs, not ones in individual categories. This is unlikely to change as it means maintaining separate bloggers, easier to just use the label function for now.
To filter blogs by labels - I'm going to do this monthly from now on, just visit:
index.lucasweatherby.com - FILTER BLOGS BY LABELS
To get around the RSS reader problem - I know some of you use this feature, just bookmark the relevant blogs that you like to your web browser by pressing CONTROL + D on your Windows PC or Laptop (or COMMAND + D if you are like me and use a Mac). Unfortunately you won't get notified if there is a new blog in your area, but I thought you might find this helpful and you can always check and leave.
Finally, if you visit www.lucasweatherby.com you will come across a snazzy little splash page that features a preview of the latest blog, my twitter feed, and a bit of information and some pictures. Feel free to check it out.
If you have any ideas for the website, even if its not blog related, feel free to make suggestions and email me at:
mail@lucasweatherby.com
That's all, folks!
Cerebral Palsy: A response, an experience
At the request (and consent of) of the Author of the comment, I have been given permission to publish the following comment in it’s own right, with making formatting adjustments to make it easier to read (the original comment was written in long prose!) and correcting spelling mistakes. The Author, I’m proud to say is my mother, I’m glad she could give some input. Though do note, if you read the original post - it says Fr Peter - bit of a mistake on the comments page there!
The response to the original blog in question and feedback has been fantastic - I have noticed many of you have been reading and it’s been a record breaking blog in the life of LucasWeatherby.com - so thank you all for reading and giving positive feedback.
Feel free to read the comment below - it is somewhat of a short essay in fairness, some 1,700 words, or skip below the formatted text to read my response: I will quote and respond to bits in part.
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 26-wks 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 salvage 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, water 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 neurologist 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 Neurologist who conducted the operation came out to our home in Temple Rd at 10pm the night before 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 shrapnel 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 abscess form in your neck and your neck disfigured with swelling, strong antibiotics once again saved your life!
You 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 hospital to administer your drugs, so they didn't have to keep stabbing you with sharp needles! you have one on your right inner ankle too). In between 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 diagnosed as suffering with Lactose Intolerance.
You had to have some awful, (I can smell it now, it was pungent)! It was called Progestamil Formula, 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 (10-wks), 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 education at the Omerod, and assessments at HEPAC, (Hugh Ellis Pediatric 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,Psychiatrist as you had behaviour problems, speech 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 adamant 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
Response:
First I think it is only natural to respond to my original post in say that:
“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 26-wks gestation had a fight on their little bodies, and it was obviously God's plan for better things.”
It is an emotional response to some of the things I have said, which can be perceived as being negative. However in the spirit of awareness and equality, I feel it is only fair of me to point out at the same time that while I am lucky, surpassed expectations and have a lot to be grateful for - which I am - that I wrote in similar vein, pointing out that appearances can be deceiving and that I (and indeed others with CP and disabilities) have just as many, if not more problems than your average Joe Bloggs.
The comment also goes on to explain many of the things I cannot remember or articulate myself because I wasn’t there to understand and record all that happened to me in quite the way my family did. It is easy for me to say “Yeah, well, I’m here now”, but I have to admit, if it were somebody else’s baby, then I’d be impressed at the miracle of science and strength and resiliency of the baby in question. It is sad to report - I feel that this is the right place - that while I survived those crucial first couple of years, David Cameron’s child Ivan, born with Cerebral Palsy and Epilepsy has recently passed away. It only serves as a stark reminder that we are all lucky to be here, not just myself.
“When Dr Hope told me and your Dad, "He's turned the corner (10-wks), he's going to make it, but I am afraid, he's never likely to play football for England"
This is true, but I’d like to share an anecdote here. Years ago, at St. Margaret Ward, I was approached by Stoke City’s Disability Football Club for trials thanks to my PE teacher trying to get me more involved. I was very interested and nearly went through with it. However an upcoming operation changed my mind (the multi-level surgery one), which left me with a metal plate in my left leg. This for the past 6 years left me being able to feel the plate in my leg like a spring and caused pain while walking, climbing the stairs. In September I had the plate removed, you can view my fancy collage of the wound below:
Anyway, obviously since the first operation I was not keen on risking any injury though now this particular risk is gone so in theory I could try and pick it up again. Its been a few years though since I kicked a football so I’m not so sure I’d be anything as half as good now!
“...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!”
To finish replying to the quotations before my final thought, I’d just like to say that it’s perhaps not so obvious. In the way you are speaking surely. But I’m sure there are some people, friends, with many stories to tell (which do usually involve when I am drunk!) It’s like the Josh Blue joke, the Comedian with CP: “I’m not drunk I have cerebral palsy!” I know it doesn’t fool you Mother, but it certainly has fooled people on more than one occasion - including a chip shop man who tried to refuse me entry before apologizing when learning the fact I have CP, and on the same day avoiding trouble with the police because I was so obviously drunk in public and could barely walk!
Final Thoughts
I don’t wish to overshadow the great effort that many people have grown through for me to keep me going, keeping me actually alive physically and getting me where I am today. But it is important that while I do have Cerebral Palsy, to not treat my grievances in this context as an unfortunate cause of the problems in my life. What I believe to be true rather, is that I am just like any other person - with grievances. Having something life CP only exacerbates these difficulties, just like it does for somebody in poverty or unemployment, or somebody with a family or without food, something with other serious health problems or perhaps even (minor) consequences of human nature in dealing with being left handed in a right handed-centric world. That is what is important and that is what awareness and equality is about: treating me as is, (equal human beings) and yet understand the uniqueness of our own individuality. I don’t think there is any two people with problems that affect them in identically the same way in every form so we must try to emphasize with each person and what they are conveying. So if what I have said appears to be defeatist and negative, then I apologize. There is both good and bad in all our lives and only looking at the good will only achievement a sense of being content or perhaps even apathy within our lives and what life brings. I wish to understand the bad things and bad times as well in order to gain a sense of moral and personal development to become a better, more stronger person - moving beyond contentment/apathy to a stage of self-fulfillment, happiness and enlightenment. In other words, spend more time worrying about being good than looking good, and being a better person, a good person, not just an average person or worse, feeling sub-human, an untermensch.
Thank you for reading,
Lucas.
PS. You will notice now that there is a separate blog theme for cerebral palsy posts. I originally intended to make a series of posts related to the upcoming operation. Given the success of my first blog and through suggestions from readers and looking at my analytical data with Google on this blog, it seems only natural now to take this further. I have also renamed the blog as well so it will be found better by search engines as well.
If you wish to read the original post and comment, you can find it here.
The response to the original blog in question and feedback has been fantastic - I have noticed many of you have been reading and it’s been a record breaking blog in the life of LucasWeatherby.com - so thank you all for reading and giving positive feedback.
Feel free to read the comment below - it is somewhat of a short essay in fairness, some 1,700 words, or skip below the formatted text to read my response: I will quote and respond to bits in part.
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 26-wks 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 salvage 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, water 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 neurologist 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 Neurologist who conducted the operation came out to our home in Temple Rd at 10pm the night before 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 shrapnel 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 abscess form in your neck and your neck disfigured with swelling, strong antibiotics once again saved your life!
You 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 hospital to administer your drugs, so they didn't have to keep stabbing you with sharp needles! you have one on your right inner ankle too). In between 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 diagnosed as suffering with Lactose Intolerance.
You had to have some awful, (I can smell it now, it was pungent)! It was called Progestamil Formula, 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 (10-wks), 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 education at the Omerod, and assessments at HEPAC, (Hugh Ellis Pediatric 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,Psychiatrist as you had behaviour problems, speech 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 adamant 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
Response:
First I think it is only natural to respond to my original post in say that:
“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 26-wks gestation had a fight on their little bodies, and it was obviously God's plan for better things.”
It is an emotional response to some of the things I have said, which can be perceived as being negative. However in the spirit of awareness and equality, I feel it is only fair of me to point out at the same time that while I am lucky, surpassed expectations and have a lot to be grateful for - which I am - that I wrote in similar vein, pointing out that appearances can be deceiving and that I (and indeed others with CP and disabilities) have just as many, if not more problems than your average Joe Bloggs.
The comment also goes on to explain many of the things I cannot remember or articulate myself because I wasn’t there to understand and record all that happened to me in quite the way my family did. It is easy for me to say “Yeah, well, I’m here now”, but I have to admit, if it were somebody else’s baby, then I’d be impressed at the miracle of science and strength and resiliency of the baby in question. It is sad to report - I feel that this is the right place - that while I survived those crucial first couple of years, David Cameron’s child Ivan, born with Cerebral Palsy and Epilepsy has recently passed away. It only serves as a stark reminder that we are all lucky to be here, not just myself.
“When Dr Hope told me and your Dad, "He's turned the corner (10-wks), he's going to make it, but I am afraid, he's never likely to play football for England"
This is true, but I’d like to share an anecdote here. Years ago, at St. Margaret Ward, I was approached by Stoke City’s Disability Football Club for trials thanks to my PE teacher trying to get me more involved. I was very interested and nearly went through with it. However an upcoming operation changed my mind (the multi-level surgery one), which left me with a metal plate in my left leg. This for the past 6 years left me being able to feel the plate in my leg like a spring and caused pain while walking, climbing the stairs. In September I had the plate removed, you can view my fancy collage of the wound below:
Anyway, obviously since the first operation I was not keen on risking any injury though now this particular risk is gone so in theory I could try and pick it up again. Its been a few years though since I kicked a football so I’m not so sure I’d be anything as half as good now!
“...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!”
To finish replying to the quotations before my final thought, I’d just like to say that it’s perhaps not so obvious. In the way you are speaking surely. But I’m sure there are some people, friends, with many stories to tell (which do usually involve when I am drunk!) It’s like the Josh Blue joke, the Comedian with CP: “I’m not drunk I have cerebral palsy!” I know it doesn’t fool you Mother, but it certainly has fooled people on more than one occasion - including a chip shop man who tried to refuse me entry before apologizing when learning the fact I have CP, and on the same day avoiding trouble with the police because I was so obviously drunk in public and could barely walk!
Final Thoughts
I don’t wish to overshadow the great effort that many people have grown through for me to keep me going, keeping me actually alive physically and getting me where I am today. But it is important that while I do have Cerebral Palsy, to not treat my grievances in this context as an unfortunate cause of the problems in my life. What I believe to be true rather, is that I am just like any other person - with grievances. Having something life CP only exacerbates these difficulties, just like it does for somebody in poverty or unemployment, or somebody with a family or without food, something with other serious health problems or perhaps even (minor) consequences of human nature in dealing with being left handed in a right handed-centric world. That is what is important and that is what awareness and equality is about: treating me as is, (equal human beings) and yet understand the uniqueness of our own individuality. I don’t think there is any two people with problems that affect them in identically the same way in every form so we must try to emphasize with each person and what they are conveying. So if what I have said appears to be defeatist and negative, then I apologize. There is both good and bad in all our lives and only looking at the good will only achievement a sense of being content or perhaps even apathy within our lives and what life brings. I wish to understand the bad things and bad times as well in order to gain a sense of moral and personal development to become a better, more stronger person - moving beyond contentment/apathy to a stage of self-fulfillment, happiness and enlightenment. In other words, spend more time worrying about being good than looking good, and being a better person, a good person, not just an average person or worse, feeling sub-human, an untermensch.
Thank you for reading,
Lucas.
PS. You will notice now that there is a separate blog theme for cerebral palsy posts. I originally intended to make a series of posts related to the upcoming operation. Given the success of my first blog and through suggestions from readers and looking at my analytical data with Google on this blog, it seems only natural now to take this further. I have also renamed the blog as well so it will be found better by search engines as well.
If you wish to read the original post and comment, you can find it here.
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