Wednesday 17 July 2013

Day 436 +1 - afterthoughts

As you may have noticed, the countdown didn't work, and now we are post-countdown - hence the slightly odd title of this post. I would apologise for the lack of updates but, since my time was filled with making last minute preparations for what I'm about to tell you, I figure I may let myself off.

Yesterday I graduated from the University of Warwick with a First Class Honours degree in English and Theatre Studies which I walked several steps to collect. The phrasing of that feels a bit blunt, and doesn't make clear how surreal it was - I just had to write it out simply to remind myself that it did indeed happen.

I'm still rather overwhelmed, as you might be able to guess - and therefore, in order to prevent this becoming waffley, wishy-washy, and vague whilst I talk about the veritable roller coaster of emotions, I'm going to give myself a structure and go through the day, step by literal step, with photos interspersed. I'll also have video evidence at some point next week, thanks to my dear friend Jade, which means this won't quite be the final post.

So, here goes:

My grandparents have been visiting on their way back to Canada from South Africa, because they wanted to see me graduate. My godmother, Jenny, also came (separately) from SA, and of course Mama and JoJo wanted to be there. My poor Papa unfortunately fell over some speedy Labradors whilst out running on Friday, so he wasn't able to come up from Woking, but we still had a full house...and a small car. This meant that Gramma, Grandi, Mama and I drove up on Monday evening and stayed the night at a hotel in Kenilworth, and Jo and Jenny caught the train yesterday morning to meet us on campus. I say all of that because the other reason we went up beforehand was to allow me to have a sneak-peek at the decorated Butterworth Hall and gauge the lay of the land.

We got onto campus for about 8.45am yesterday, parked the car, and were ably assisted by Claire and Stuart, two of the organisers, in our investigation of the stage set. Upon discovering that there was a ramp across the front of the platform which everyone had to use, we agreed that I would drive up one side, shake the Vice-Chancellor's hand, and only then would I walk. (I'll save the description of how I did so for a bit.) Having established this, I went to get robed up, and found that the tailors had very kindly organised a shorter gown which wouldn't get caught in either wheels or feet.

Cue a photoshoot...

Two generations...



  
Liminal space...!

...to make the most of the weather before we had to go inside. With the prospect of walking, my muscles were delighted by the heat.

Once inside the Butterworth (for real this time!) I saw that I was number nineteen, because English and Theatre was to be among the first of the cohorts to be awarded BAs, following the PhDs and a few MAs. This made me happy, because the nerves were intense. I glanced around and saw my friends, both those graduating alongside me and those in the Chamber Choir. Then I smiled as the latter lot began to sing, during the procession of the faculties. It was really happening.

They looked like something straight out of Hogwarts!

 The Vice-Chancellor gave his speech, and everyone who could stood. I found the fact that I had to stay seated somewhat ironic, given my plan. Then the ceremony was open, and the first round of candidates were 'admitted to their degrees'. Here began the lining up, and one of my tutors from last year received her PhD. The person conferring the certificates was our Head of Department, Catherine Bates. When I took my place in the queue, Mama and Jenny came with me, because they would soon have an integral role to play. We clapped and cheered for my dear friends, fellow 'Fam' members - and then it was my turn.

Now, I was completely unprepared for the reaction as my name was called. Before I had even driven onto the stage, people were roaring. It was truly magical to know my friends were rooting for me, and it spurred me on to make it happen. So I shook hands with Nigel Thrift...


...flanked by Mama and Jenny. Then it went quiet. The room was filled with an anticipatory hush. Mama and Jenny came in front of me to help me out of my chair and support me under the arms...


...and I stood up, took three steps, and collected my degree:

Success!
I was overwhelmed enough with joy as it was but, whilst this was taking place, the roar of support was amazing. I wasn't really aware of anything except the placement of my feet, and how to shake hands and take my degree at the same time with the same hand, but I discovered from photos afterwards that my dear, dear friends had led a standing ovation of all my fellow graduands. I felt (and feel) completely humbled. I just hope everyone could cope with the extremely long pause.

Everything after that is a bit of a blur, but I clapped and whooped for my friends, as they had for me, until I was hoarse. Then Sir Paul Nurse received an honorary degree and gave a lovely speech, after which the Medics got their degrees and recited the Declaration of Geneva. I was particularly happy to graduate with the Medics, because it meant that my Orthopaedic consultant, the man who gives me Botox, was on the platform. His injections are hugely responsible for what I was able to achieve.

Then we all processed out, and us English lot were treated to drinks and nibbles. Cue a 'Fam' photo (minus a few sadly missed absentees) and many joyful (and tearful!) goodbyes...

 
English and Theatre rules, okay?
...which brought our time at Warwick to a close.

What a day. What a journey. What dear friends I have. There are no more words, except an abundance of love and gratitude.

We did it! #Walkingby2013 #graduation

Thursday 11 July 2013

Day 431 - 5 days

I had planned to upload a video tonight, but my iPad Mini won't let me, so you can have this instead:



You're welcome.

Tuesday 9 July 2013

Day 429 - one week to go!

Warning: this entire post ought to be encapsulated in a bubble of tl;dr. It is very much too long, for which I apologise in advance. However, it would mean a huge amount to me if you were able to stick with it until the end so thanks in advance, too.

So. After more than a year of working and writing, I have come to the milestone along this road that tells me there is a week to go. This is rather too huge a reality for me to render coherently in words without the help of a metaphor, and the one I have chosen is somewhat topical - Wimbledon. Contrary to the predominant trend of press coverage, though, I wish to draw attention to elements of the women's final, as it was contested on Saturday 6th by Marion Bartoli and Sabine Lisicki. The catchphrase of this match seemed to be 'mental', in the sense that the winner was decided more by the strength of the two competitors' mental attitudes than any particularly brilliant tennis. Bartoli, being interviewed before the match, stated that she is 'a tiger on the court' and then admitted that if she behaved the same way she does in her every day life whilst she was playing tennis, she wouldn't win anything, because she's too nice. Lisicki is also too nice, and vulnerable to nerves, which led her to be very close to tears at one point during play and become overwhelmed.

I think I might be closer to Lisicki, and be a little too ruled by my emotions. I've written before about how I let fear get in my way, but it's so fundamental that I think it bears repeating. I repeat it now because, building on my resolution of independence, I have resolved that I need to be more like Bartoli, at least in relation to my physical work. So, over this final week, that will entail being ruthless with my mind - barrelling through the wall of fear (fear of pain, especially) in order to do the exercises I need to if I even want to attempt this feat (feet!) next week. Although I do rather hope that I will be so taken up by the moment that I won't really be sure how I got across that stage - which brings me to why I still think Lisicki has what it takes to win. She beat Serena Williams, of course, but that's not all. Three years ago she injured herself so badly that she was completely unable to walk. On Saturday she became the runner-up (a word used in full cognisance of its significance) of what is arguably the premier tennis tournament in the world. If that's not a story to give one hope, I don't know what is.

The other major theme of the match seemed to be parental support - Lisicki's parents giving up everything so she could train, and Bartoli's reconciliation with her father, her longtime coach. My mother has been my coach, and I don't think I've quite given her her due. She has quite literally stood by me this whole way, without me even having to ask. So thanks, Mama, and sorry for the tired and crabby part of myself which emerges sometimes, for you and no-one else to see. You've put up with a heck of a lot, for which I'm so very grateful. Thanks for keeping me on the right mental track.

Because it's mentality that's saved me. I don't think I've ever been entirely sure how I'll do it (I'm still not now, with a week to go) but I've always known that I would somehow, however tough it got. Never give up, never surrender. My CP and my body might have had other ideas, but I've not let them stop me, and I won't.

Bring on week the final. Thank you and good night.

Thursday 4 July 2013

Day 424 - Independence Day

It would seem I've failed miserably at this blog-every-day thing. I thought I'd have considerably more time once I was home, but it appears that when you actively have to rearrange a fairly busy schedule to fit a job in (even if it's a welcome chore, like blogging) you're more likely to do so - a phenomenon for which I did not account, and for which I apologise. That's not to say I haven't been busy - quite the reverse, in fact. Over the weekend I had medical appointments, because home visits are easier and my osteopath and acupuncturist can't always fit these in during the week. On Friday someone came to fit new casters on my chair, which meant I had to be out of it for a while, if I didn't fancy being tipped on my side. (I realise those two sentences were out of chronological order - sorry.) On Monday I went with Eileen to visit our old secondary school, which was lovely. On Tuesday I had an interview and I got a place on a course, something on which I might elaborate at another point if it doesn't feel too boastful. Wednesday (yesterday) was spent catching up with Savannah, now both our lives have calmed down a little, and we could talk over hot chocolate and herbal tea instead of the screen of my laptop.

These aren't excuses, though - merely explanations. I say that for two reasons. Firstly, since I've become a graduand, and received the results I did, I've realised that I no longer have to justify myself -  and that includes making excuses. Having grown up in a world where I've always felt I had something to prove because of my disability, that's been a pretty damn refreshing epiphany. Secondly, the long list of things I had to fill my time with provides an example of my topic - independence.

The impetus for this post is simple - today, July 4th, is American Independence Day. Now, as a Brit, I might be expected to know that this part of the history of the United States does not reflect too favourably on my own cultural past - and I do know it. I also know that we Brits had an empire which was questionable and so have no right to judge those who had (quite rightly) had enough. Furthermore, with my heritage, I owe allegiance to Canada and South Africa as much as I do to the UK...and, well, it was a helpful metaphor for this post, all right!?

So. Yeah. Independence. It has long been known that I make my resolutions in the summer, at camp, because that's when the year begins and ends for me. But this year, as I was pondering the empty gulf which faces me when I finish with this blog, I decided to make them slightly early. They are simple and few, and mainly focused around finishing what I've started here. Walking to get my degree felt like the epitome of independence a year ago, and on one level it still does, but along the way I've come to understand that it's not so much an act which constitutes independence, but a way of life, and (most importantly in my book) a mindset. It is this mindset I intend to carry forward into 2014. Happy new year ;)!

Saturday 29 June 2013

Day 417 - BOtox ;)

For all the sadness of leaving Warwick on Wednesday, I was also very excited to get home - to see my family, my best London school-friend, Eileen...and to go to what was only my third live gig ever. I've said for a while now that I'd dedicate a few of these posts to some of my non-medical methods for stress-relief, relaxation and muscle spasm control, and music (either my own or others) offers all of these benefits, as well as providing a soundtrack for my physio sessions. I have quite eclectic tastes, ranging from Queen and The White Stripes to Handel and Mozart, as can be seen from this playlist I posted some months ago - but it takes a lot for me find current artists who I absolutely love. Bo Bruce is among this select few and, because her EP and album have carried me through the ups and downs of the road towards this crazy goal, I thought that now (following her gig at Bush Hall on Wednesday) was the right time to say thank you.

Hence the terrible pun in the title. You see, the impact of Bo's music on my physical progress began all the way back on 5th May 2012, when I had my first round of botox injections. As I was coming round from my anaesthetic, I had the first two lines of the chorus from one of the songs off her EP, Search the Night, in my head. The song was called 'Behind the Gates', and the couplet went as follows: 'Lead us back to the light/I can't see you in the dark night'. The aptness of the lyrics to my situation was uncanny, if a tad literal, so it seemed to me that I couldn't let this coincidence pass by - and I have since listened to that EP for motivation in the vast majority of my physio sessions, because it's been with me from the beginning.

Furthermore, unlike most of my exercise soundtrack, Search the Night managed to spill over into the realms of my general musical appreciation - because it has helped me through the bad times as well as the good. Whereas Katrina and The Waves' 'Walking on Sunshine' can seem mocking if it catches me on a spasmy day, Bo's 'Fighting Arizona' somehow acknowledges how difficult it is to be stuck in a hole, whilst simultaneously affirming that there is a way out. The same can be said of the tracks on her new album, Before I Sleep - perhaps even more so because, for the last couple of months (as I waited for my latest round of botox injections which would get me back on my feet), listening to them was the only way I could relax my legs enough to allow myself to sleep comfortably, or to write my last few essays and my dissertation. It helped me to 'turn the ruins into something beautiful' ('Speed the Fire'), to transform the spasms into a productive impetus for creative (and eventually physical) triumph - and, on a non-academic level, it brought me to the realisation that 'I miss you' is a perfectly reasonable thing to say to the friends who are no longer with me ('How We're Made').

All in all, her first tour was not one I was going to miss - and this leads me to another reason to be grateful. Very few intimate music venues have good accessibility, if it's possible to get in at all, so I've not been to many concerts. The Bush Hall exceeded all my expectations - we had a little section at the side of the stage, and a great view, even though everyone else was standing up. I felt very privileged to be so close, and as though the staff had really thought about what I would need.

The set was fab - both Bo and her support Boxes came out and gave it their all. I cried silently during 'Lightkeeper' and 'How We're Made', my two favourites, and found a new joy in Boxes' 'Can't Imagine'. It was magical - and that would've been enough. When we went out to buy a t-shirt and a copy of Boxes' EP, though, the magic went through the roof. Bo came over, said she had seen me from the side of the stage and wanted to talk. So I got to say thank you in person, and to tell her about my blog. I only hope she realises how much I meant it.

Thank you.

Still grinning!

   

Day 416 - Alas, poor Warwick!

Preface: I know this is three days late, for which I beg pardon, but time has been running away from me, what with packing up, the long car journey and evenings where I wasn't at my computer at all. In my defence, the events of the last few days merit posts all to themselves, so you're getting four updates today as compensation for my having skipped three.

Where do I even begin with a post like this, in which I attempt to encapsulate the nuances, idiosyncrasies and had-to-be-there moments of the last three years? Well, methinks I actually ought to commence this semblance of a narrative some six years ago, when I was still at my first secondary school. I haven't gone into my experiences at this school in too much detail before now because, aside from the friends I made, I didn't have the best time, as you will read in the story below...

In my final year at the school (Year 10) I had the honour of being chosen as Head Girl, one of two representatives for the student body, and knowing that my fellow pupils trusted me to be the voice of their concerns. Along with regular meetings with the Headteacher, the primary extracurricular aspect of the role required that both I and the Head Boy, Chris, attend any official events on behalf of the 130 or so other students. Since our school, Treloar's, was founded by its namesake, Lord Mayor Treloar, in 1908, the chief of these events has been the annual visit of whoever is the current Lord Mayor. Now, whatever issues I may have with the politics behind the position of Lord Mayor, I was very excited by the prospect of this visit, not least because I hoped it would provide me with the opportunity to smash some of the stereotypes surrounding the education of young people with disabilities. I was in the middle of my first year of GCSEs, and looking forward to discussing my aspirations with some of the members of this rather stuffy party. Over the dinner we shared I did just that, finding them to be surprisingly human, and engaging in a philosophical debate with a particularly lovely lady, whose name I now can't recall. Imagine my dismay, then, when, during post-dinner discussion, that same woman asked my fellow tour-guide, Ms. Huddart, 'whether someone like Jessi could go to university'. The question was fair enough, and it showed her interest in my scholarly future, so I didn't mind her asking. What bothered me was Ms. Huddart's response - 'Well, perhaps not at 18, but maybe at 25.'

This lengthy preamble will hopefully serve to illustrate my feeling of elation when I received my (overwhelming) results on Tuesday - because they are evidence that I not only went to university and got a degree, but that I did so by the age of 21. I feel I no longer have anything to prove, and that's amazing. The fact that this degree occurred in the company of many wonderful groups of people, doing many wonderful things, is something for which I will be forever grateful. From being in the chorus of, and assistant directing, operas, through shenanigans with Shakespeare and being lucky enough to call myself a member of 'The Fam' (possibly the best course cohort ever to grace Warwick University campus), it's impossible to distil the wonder that has been the last three years into a single ramble. Hence the title of this post - because, whilst I am a very happy bunny to be home and to have permission to relax, I can't quite fathom that it's over and I won't be going back in October.

So, in true literary (and academic) spirit, I'm going to filch someone else's (namely Charles Dickens') words to fashion a fitting epitaph for my degree:

It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to Heaven, we were all going direct the other way. (A Tale of Two Cities, Vol. I,  ch. i)
 I hope my dear Warwicensis will accept this - at any rate, it's been grand, and I love you for it.

Tuesday 25 June 2013

Day 415 - a day of firsts

I had hoped to write a coherent, readable post about this, and about the three years which have now come to the most amazing of ends. I want to do justice to the experiences I've shared with friends, and to express how lucky I feel to have been part of the wonderful 'Fam' that is and was the Warwick English and Theatre Studies Class of 2013. Tonight, however, it seems I am a) too hyper and b) too emotional to do so, and I shall therefore save any attempts until tomorrow morning, the dawn of my final day (ever!) in the dear old 'Bubble'.

In the meantime, I offer the picture below as evidence of my joy, and the t-shirt as an emblem of the essential circularity of things - because, in all sincerity, I wouldn't be here without Pride and Prejudice:

Yay for degrees and yay for Darcys!
I shall write more on the morrow; for now let me end with the hope that this picture will soon rest adjacently to one in which I am not only smiling but standing. Three weeks today - though I am already walking on sunshine!

Monday 24 June 2013

Day 414 - an alternative form of alternative medicine

Although it was my intention to be humorous hen I titled yesterday's post 'medicinal hiatus', I was actually only half joking. Many people knowingly joke about the beneficial effects of the copious amounts of alcohol the consume in order to give themselves a licence for doing so - and indeed there are studies which show the good that a glass of wine or two can do for one's physical health. My object here is not, however, either to justify or to discredit the beliefs which surround the positive nature of booze. I merely wish to provide a slightly unusual perspective on such matters.

Anyone who has been reading this blog for a while, or who knows me personally, will be aware that I have spasms. They may also be aware that these spasms are provoked by fear. This fear is often associated with stress, but it goes deeper than that, stemming from a fundamental feeling of instability which is neurological as well as emotional. Furthermore, my cerebral palsy means that the information crossing my synapses is often incorrect, so I am left feeling unstable most of the time, however safe I might be in reality. This instability causes me to tighten up and spasm, which in turn causes yet more instability - and creates a situation which can be solved in two ways. The first of these is to treat the symptom, the spasms, which is what happens when I have botox. I receive injections that paralyse the offending muscles, and which then allow me to build up others with the aim of regaining stability. All well and good - except the botox wears off after three months, and I frequently find myself back at square one, not having passed go or collected £200, because all the physio I've done becomes impossible as soon as the spasms return. This notwithstanding (terrible pun!), the botox shows me what I can do and has taught me (and the many professionals with whom I work) one crucial lesson, confirming what we supposed - that when my body feels stable, I do not spasm.

The truth of this supposition was reinforced whilst I recovered from one of my earlier rounds of botox, and the sedation (I didn't have anaesthetic in those days) had not quite worn off. I felt well enough to get back into my chair, and Mama sat me up on the edge of the bed in order to help me do so. Then, with a little support from her as she stood in front of me, I got up and stepped over to my chair before swivelling around to perch on the edge, as though this was completely normal. I hadn't stepped (even with help) for some years, and the fluidity of my body amazed us both - but what became clear was that, with the lingering sedation clouding my habitual neurological responses, I wasn't hindered by my usual anxiety and could therefore access the relaxation I had before I developed my spasms as a teenager, along with the subsequent physical ability.

This brings me to the second possible solution - removing the cause, namely my fear. Unfortunately, there is yet to be a form of medication which has such powers...but this is where the alcohol comes in. I drink rarely, and when I do I stick to a little whisky (or 'whiskey', if it's bourbon). The thing is, I notice the same effect. I feel stable after a drink, so I don't spasm. This makes sense, because alcohol reacts chemically in our brain to alter the neurological responses to our environment - it just is slightly more helpful for me that it does so.

I'm working to find a sober equivalent, because I don't want to have alcohol as my only recourse. Twice a month is enough tipsiness for me, having kicked my other 'drugs', like baclofen. I like my mental faculties in tact. For now, though, I'm grateful for the effect it has - it gives me an excuse to be a student!   

Day 413 - medicinal hiatus

Tonight there isn't a post as such, but I didn't want to skip a day (though it is after midnight), so I thought I'd offer this image as explanation:

Having far too much fun with friends - normal service will resume shortly. Good night (or, rather, good morning)!

Saturday 22 June 2013

Day 412 - chair surfing

I mentioned in my post about my new found furry friend that I view his entrance into my life as a blessing for a number of reasons. The first of these is the companionable bond that we have already begun to develop, even in the single, short visit I've had with him. So far, so typical, since who doesn't know the ancient adage 'a dog is a [wo]man's best friend'? The second, too, is rather obvious - I hope we can provide each other with mutual comfort, and offer consolation when times are rough as well as good. The third, however, may not be so easily discernible, although I did touch on it briefly; it is that I see my dear Darcy as an incentive which will compel me towards further physical improvement, post-graduation, because he deserves to have the best kind of walks.

It is perfectly possible, of course, to walk a dog when one uses a wheelchair - many of my friends do so, whether or not they have trained their pet to be an assistant - and that will be my method at the beginning. After all, I can't give other people piggybacks, but I've found an alternative which is almost as good, I think. Friends (and frequently PAs) stand on the back of my chair, and we zoom along, sometimes pausing to re-enact a certain scene from Titanic. In this way, the trust we share becomes reciprocal - because just as I would hope that I'm safe enough, for instance, not to be dropped when they help me out of my chair, so too must they hope that I won't tip them off the curb when we're going round a corner. It's brilliant fun - mostly because it makes people stare for entirely different reasons that they usually do!

Nevertheless, in the same way that my friends and helpers would love the novelty and thrill of 'chair surfing', as we call it, I would equally love to experience the simple joy of leaves and twigs crackling under feet as I amble along a woodland path - so, whilst Darcy seemed to enjoy burrowing into the gap between my seat and my armrest, and I would quite happily leave him there, I'm going to try and use him as an extension of my therapy programme, and take my excerise when he takes his. It'll take a while, and it'll be a boggy ramble, but I'm going to need something to keep me going past the big day - and the end of this blog!

I won't be fussy about where we cuddle, though, and I'm also hoping that he'll adapt to me as much as I'll adapt to him. True friends take each other as they are and, in being a true friend, he might just teach me to take myself as I am. Perhaps I'm not the only one who needs training, however grateful I am for the experiences my disability has given me, and despite my understanding that I wouldn't be the person that I am today without it. Maybe he can help me to further that understanding, as well as to reach future walking-related goals - and, in return, I can always teach him to do this:


Friday 21 June 2013

Day 411 - some summer solstice schmaltz...

...and an abundance of alliteration. Now, Midsummer Night (since today marks the middle of astronomical summer, although meterologically it is the beginning) is perhaps not the festival one would most readily associate with schmaltz. That role is one which tends to fall to the celebrations designated as public holidays, such as Christmas and New Year. After all, you don't get Wham! lamenting the giving (and losing) of hearts at Stonehenge, do you? This notwithstanding, as well as being a fan of Shakespeare's eponymous comedy, I am rather fascinated by the histories of 'pagan' ritual, and consequently mark my year according to these older 'holy-days' alongside their slightly more modern counterparts, of both the religious and secular varieties.

That's not to say I've ever participated in any kind of revels on this day, though I might've liked to. One of the items on my 'Before Thirty' list is a visit to Wiltshire to join in the festivities. I think, however, that is possible to note the significance of a moment within oneself, in however small a manner. In deference to the day, therefore, I took the opportunity to reassess where I find myself, and to look both forward and back.

This was aided by two events, both comparably small in the grander scheme of things, but significant nevertheless. The first of these was the Warwick Open Day, unusually held in term-time, which allowed prospective students and their families to investigate the facilities on offer here. Not only did I realise that these potential Freshers would not be starting until the autumn of 2014, and are thereby four academic years behind me, but one of them was Emily, younger sister to my friend Lauren, about whom I have posted before. Cue a flying visit and much nostalgia. I can't quite believe how quickly uni has flown by, and that brings me to the second event - the joy of eventually procuring a much-sought-after measuring tape with which to ascertain the size of my head for my mortar board. Graduation is swift in its approach!

So, here is the schmaltz - on this solstice day I have been reminded of the speed at which time passes, as well as the compression effect which seems to occur when you glance back, watching other people do the things that you have done, because it feels like just yesterday that you did them yourself. With this in mind, I'm going to try and savour each and every day (nay, hour, minute, second) of the next three years, before I find myself sitting looking back on them and wondering where they disappeared to.

You now have my permission to cringe.

Happy solstice!   

Thursday 20 June 2013

Day 410 - my very own Darcy

Whilst I may not have given the nuances of my course much space on this blog (prior to yesterday's post) I have certainly illustrated the passion I feel for my subjects - as well as the impact that both literature and theatre have had on my journey towards this goal. I could even argue that it is thanks to the arts that Walking by 2013 even exists because, without my love of books, my relationship with Starlight might never have begun - and I've certainly talked a lot about that, with more than a little help from Jane Austen. However, contrary to the implications of the title, this post will not consist of yet another diatribe on the brilliance of Pride and Prejudice - nor will it be a soppy homage to a newfound love interest who I think is the greatest being ever to tread the earth.

At least, not quite. Have no fear, Gramma (and Mama), I'm still single, so you've not missed anything over there in South Africa. In fact, you're among the select few to have seen photographic evidence of my post's topic. For, although I won't be welcoming a human companion into my life in the near future, I will soon be blessed with one of the canine variety - and, since he's male, I'm sure my dear readers will have little trouble guessing his name, if they don't know it already.

I'm not getting him until the end of July, so he's not directly related to this mission, but I can assure you that my efforts in the ambulatory sphere will not cease after graduation. Far from it - I even hope that some day we'll be able to stride over Hampstead Heath together and he'll be the one struggling to keep up with my exuberant pace. For now, though, I thought it was about time I uploaded pictures - and, because I'd rather keep his Facebook presence to a minimum until he's actually home with me, this seemed like the perfect opportunity.

So, blogsphere, meet my beloved Darcy:

With his breeder, Jan, after a flanneling down!
Having been to visit him once with his brothers and sisters, I can say he's gentle, quiet and reserved, so methinks I chose the right name! Hopefully you'll love him as much as I do!

Wednesday 19 June 2013

Day 409 - all for the love of literature (and theatre)

Two days ago I posted about CSC, a group of people who have contributed their efforts to my fundraising but had, until then, not been mentioned here. Today I'd like to do the same for the Department at Warwick whose ongoing support has been the constant undercurrent of my writings on this journey, but has yet to have a dedicated post - the Department of English and Comparative Literary Studies. For you see, although I have often written of my love for my course (a joint-honours in English and Theatre), I don't think I have been clear enough along the way about the fact that I wouldn't be on this mission to walk to collect my degree (or even have a degree to collect) if it were not for the ongoing support of my department and the lovely people who work within it.

Due to the nature of my disability, I am at times (sans botox) in quite a deal of pain. This arises principally from spasms, and gives rise, in turn, to a need for extensions on assessed work, as well as modifications to examined situations - however begrudgingly I might admit it. Such measures would have not been possible without the support of the wonderful Academic Office staff (Caroline Griffin, Heather Pilbin and Sarah Box) or the feats performed by the brilliant Exams Secretary (Tracie Williams). Nor would they have been actioned without the blessing of the Head of Department (Catherine Bates) or the many forms signed by the various Directors of Undergraduate Studies (Liz Barry, Christiania Whitehead and Daniel Katz) with whom I have had the pleasure of dealing over the past three years. Then, of course, there are the tutors who have taught my seminars and given my lectures, sadly too numerous to mention individually, being spread across two faculties - but all of whom have been inspiring, inclusive and incredibly understanding. My gratitude knows no bounds, and I have learnt so very much. My primary ports of call, of course, have been my Personal Tutor (Carol Rutter, and Tess Grant in her stead for second year) and the other stalwart of our theatrical niche, Tony Howard - I truly do not think I would have survived without all three of you, and I want you to be aware of the extent of my thanks.

Having been so wonderfully supported, I really could not ask for anything more - and yet now I am compelled to let my gratitude spill out of the cup of intellectual enquiry and run over into the realms of personal, social interaction. For, as though the lengths to which the entire department have gone to provide me with academic assistance weren't enough, members of the faculty have also been responsible for a huge share of the fundraising which has allowed me to reach (and to exceed) my target amount, as of today. I am so incredibly thankful - and, since it was the course they teach which provided me with the inspiration to begin this quest, it feels rather apt.

Starlight got me to English and Theatre at Warwick, and now English and Theatre at Warwick has got back to Starlight. I will never forget either of those things.         

Tuesday 18 June 2013

Day 408 - stand before you walk, walk before you run

Today's post is a short one, but here it is, because I don't like reneging on promises.

This blog mainly concerns itself with documenting the progress I make in walking. It is, after all, called Walking by 2013. Nevertheless such a title, and the subjects I have covered here thus far, belie both the depth and breadth of what I have to do to prepare for the big day. My desired goal is indeed to walk and, specifically, to walk to collect my degree - but, in order to walk, I need to be able to stand, to balance. Equally, in order to stand, I need to have strong leg muscles and tendons - particularly quadriceps and hamstrings. My point, here, is that (although I am not at home, and consequently not walking) it doesn't follow that I am not continuing with my training. Far from it - because when I am in my chair, seemingly stationary, my body is in fact constantly moving. So I have learnt to harness this aspect of my disability and use it to my advantage.

A couple of leg jiggles, for instance, actually constitues a pretty good quads workout - as does an increase in the pressure of my foot on its footplate. If I feel my hip-flexors need a bit of a stretch, I lean forward as far as I can go, and then make myself work hard to sit back. These are kind of vertical sit ups or, at least, that's the closest approximation that I can give. I also do the horizontal variety before I sleep.

Of course, none of this is the same as a sustained effort at walking, but it provides a stop-gap - and it makes me feel as though I'm not slacking off, just like these daily blog posts bridge the chasm between now and the videos I'll put up from home. I only hope they're enough to satisfy my readers - but, when coupled with the notion that I expend roughly twice the normal amount of energy on any activity, thanks to my spasticity, I believe they will suffice.

Thanks for sticking around, in any case.    
  

Monday 17 June 2013

Day 407 - the magic of the interweb

Welcome to the first of the every day posts I promised. Yes, it's late at night, but it's still the day after yesterday. I was determined to keep my word even if it meant staying up until 23.59, and I've made it, however quickly the day has flown by. It's amazing what one can find to while away the time when one has nothing to do, especially with the prevalence of the internet in our contemporary society - and that's what I'm writing about tonight.

Now, as is evidenced by the paucity of publications to this blog, I'm not a major techno-fundi (a South African term, sorry Brits!). I'm hardly ever on Facebook, I have a flip-phone with no internet access, which isn't even manufactured anymore, and my Twitter account was kept fiercely private until it became my main platform for this mission. In fact, I'd quite happily be utterly uncontactable except by letter, so do not by any means consider this post as a homage to the likes of Google...*cough* tax-dodgers *cough*. I am also extremely aware of the threats and dangers posed by our current level of (social)media saturation, such as the increased amounts of cyberbullying and trolling.

All this notwithstanding, my aim tonight is to highlight some of the positive potential of this technological expansion and growth, and the speed at which it is occurring. The thing is, however much of a neo-luddite I might profess myself to be, I owe an awful lot to the presence of technology within my life. If not for sophisticated computers, I couldn't even get around independently, because that's essentially what my wheelchair is driven by. Slightly less fundamentally (though not really, since I've just finished an English and Theatre degree) the online availabilty of academic journals has allowed me to circumvent the fact that I physically can't fit between the shelves of the Warwick library without fear of getting trapped. Perhaps most pertinent to this mission, the internet has allowed me to write this blog, without which I would have been unable to share my story, to raise awareness for Starlight, and to raise funds on my JustGiving page. The latter point brings me back to the end of my last post, where I stated that the updates over the next month would consist partly of gratitude towards those I have yet to mention - because all this focus on technology has been a preamble to just that.

It is possible to leave comments on blogposts, a feature I have come to appreciate immensely, because it has not only provided me with tangible evidence of the support of my readers, but has allowed me to forge new relationships. Some months back I received a comment from an IT consultant named Jonathan Cordwell, who works for a technological business solutions company called CSC. He expressed interest in my story, and it soon transpired that they were looking for a Warwickshire-based charity to support, as a team from the company would be competing in the UK Corporate Games this July - the events of which are to be held at Warwick. So he wanted to collaborate with me on fundraising, and add their efforts to mine!

I was amazed at the generosity of his idea and, consequently, the powers of the internet. We have never met, the company knows nothing more of me than what I post here, but they still wish to donate and support me - a kindness which I am sure I will never truly repay. The games are on 6th July, by which time I will have been kicked out of campus accommodation, and I won't be there in person to express my thanks. So, whilst I have been working with Starlight to create a few little surprises for the team (some of which they may already have received), I wanted to use one of these, my posts in the final month, and offer it as yet another token of my gratitude - to team CSC as a whole, but to Jonathan in particular for getting in touch, those many months ago. I really can't thank you enough - I only wish I could do so face to face but, since the internet brought us together, perhaps it is apt that this is how I now send you my support, and cheer you on at the upcoming games.

Go Team CSC!       

Sunday 16 June 2013

Day 406 - the final countdown (one month to go!)

Eleven days ago I finished my degree. Usually, I don't like odd numbers, so it might have made more sense for me to post yesterday, when it would've been ten days. Today's date, however, marks a very important milestone - so I had to get over my obsession with neatness and write an update. As you can tell from the parentheses in the title, the 'very important milestone' is that which marks today, June 16th, as the beginning of the final month of this mission. To put it more simply: exactly a month from this date, if everything continues to go the way it has been, I will be walking across the stage in the Butterworth Hall to collect my degree.

My primary response to that realisation is wonderment; for once I do believe I might be lost for words. One should never, of course, trust those kind of statements - look at Shakespeare's characters, who say they can't speak and then summarily proceed to waffle on for half a page of blank verse - but, as a theatre student, I think it's my prerogative to take some artistic liberties. Words, after all, are my medium, either as an actress or as an author...but I shall endeavour to put these to good use.

What exactly does 'one month to go' mean? Well, principally, it means that I'm going to try and post an update every day, instead of in the shamefully sporadic manner of which I have recently been guilty - and these updates will consist of a variety of things. As I had a round of botox injections on Friday, my body is noticeably relaxed, which means that I can quite literally step up my training. So, during the part of the month for which I am at home (from the 26th June onwards), I will post video evidence of progress - evidence which has been sadly lacking for some time, as I raced towards other, academic deadlines.

For the next ten days (whilst I am still at uni) there won't be videos, but I have something to offer in their stead. I have repeatedly emphasised how aware I am of the fact that this journey has not been undertaken alone. Far from it - there have been many people, both individuals and groups, who have helped me along the way - and I want to take the opportunity and time that I now have to do proper justice to the impact of those I have not mentioned before. Some of them know, some will be completely unaware - but they all deserve acknowledgement, and I hope to give it to them.

In this vein, I shall also be posting about some of the strategies which have helped me through difficult patches, particularly my stress during exam time. I hope to illustrate in these posts that the lack of activity on this blog did not equate to a deviation from my mission but, on the contrary, that the time I did not spend writing was necessary for other forms of ground work.

Finally, amidst the training videos, the gratitude and the coping mechanisms, there lies a reminder that this project is not all about me and my personal goal. Rather, it is about the potential impact that the achievement of that goal could have on the lives of others. This impact will hopefully be more than just material, in the way that a Starlight wish is more than just what happens on the day, more than the toy or holiday a child receives. If I might be presumptuous, I would hope to show through my mission that, no matter what you're going through, it is possible to make your dreams come true, if only for a flickering moment of joy, like the brightness of the star in the Starlight logo.

The wishes that the charity grant epitomise that sense of possibility, and create precious memories for entire families to cherish - and I am aiming to impact upon that too - which brings me back to the material. Over the last year and a bit, this blog (and all the people who have supported it) has managed to raise £1,755 - 87% of my target amount, £2013. I can't quite believe we've got that far, but we have, a fact for which I will be forever grateful. This means that we have only £258 more to raise to reach that target - and, whilst that still feels like a scarily huge amount, if we've come this far, I think we can do it - just as I think I can walk across the stage. At some point over the next month, like 'The Little Engine That Could', my refrain will morph into 'I know I can' but, for now, the repetition of 'I think I can' is good enough to keep me going - because thoughts are powerful.

So, at the end of this post which marks the beginning of the final countdown, I have a few things to say:

I think I can walk across the stage. I think we can raise the money. I think we can do it together.

Bring on month thirteen of Walkingby2013.

Thank you. 

Monday 10 June 2013

Day 400 - breathing deep and running free

Five days ago I finished my degree - it hasn't quite sunk in yet, so you'll have to wait a bit for that post - but that's why I've been absent for so long, mired in final exams. Anyway, tonight I have something else on my mind.

A year ago yesterday, I wrote this post for my friend Lauren, when she would have turned twenty - something I wanted to repeat this year. As you will have noticed, though, there wasn't a post yesterday. This wasn't because I didn't have time to write one, despite being busy - I did. It was simply that the coming of her 21st hit me harder than I expected it to, and I couldn't quite see through the tears to write a coherent piece which I felt would do her, and the day, justice. At first I wasn't sure quite why I was so affected but, as I thought about it overnight, I came to comprehend my sadness.

I think, however aware we both might have been about the slim odds that it would be so, we still managed to believe that we could see our future selves celebrating our 21sts together. After all, when you're thirteen and fourteen, twenty one is half your life again. It's dreamland - and dreaming is what you do when reality is too scary to face. So we dreamt...and I guess that, yesterday, the understanding that the reality had finally caught up with me was a little too much to bear...at least in writing.

This post isn't about grief, though. As is my custom, I lit a candle - and, whilst I was watching the flame grow, I had a thought. A thought which has come to me many times before, and which I try to remember, but of which I don't think I've ever fully caught hold. Lauren wouldn't want me to be sad. It sounds so vapid, and looks terribly trite written down, but I think it's true. She'd want me to have fun instead - after all, it was from her that I got my love for Cyndi Lauper, however difficult it is for me to listen to that classic song now that she's not here to hear it with me.

More than that, I like to think she celebrated her day, wherever her very particular bundle of molecules has ended up - and I like to believe that she's kept her promise and is watching each and every step I take along the road towards this rather outlandish goal of mine. Her dad said, all those years ago now, that he hoped she was 'breathing deep and running free' - and I hope, too, that I can remember her saying that the most important thing was 'to be happy' - because it's in Lauren's memory that I'm keeping going, and working towards 'running free' myself.

I hope you're proud, best pal, and I love you. Happy birthday.


A candle for your 21st
 
 

Sunday 5 May 2013

Day 365 - 525,600 minutes...

...how do you measure a year?

I suppose I could just ask the cast and crew of the Music Theatre Warwick production of Rent coming to the Arts Centre very soon, but that'd be too easy, and rather defeat the object of this post, which is that (as you can see from the title)...

...a year ago today I literally took the first steps along the road of this mission.

I can't adequately describe quite how amazing that feels, so I'm not going to try. What I will say, though, is that however fired up I was then, post-botox, I'm not sure I ever really thought I'd hold out this long, let alone be as close to achieving my goal as I feel right now.

So, in celebration of the fact that I am still here, I'd like to measure the year in one simple word - gratitude.

Gratitude for the milestones I've reached and posted about, sometimes leaping over them and other times doing a pretty good imitation of a snail. Gratitude for those I am still to reach, for the fact that they're so near that I could touch them, if only I were brave enough to reach out. Gratitude for those about which you have yet to read, but will be shared when the time is right and free enough for me to do them justice.

Gratitude for the incredible people I've met, some of whom you've heard about, others about whom I am yet to write - but all of whom have supported me in ways for which words will never seem enough. Gratitude for my family, local and global, who have been there since the beginning, not just of this goal and this blog, but of my life. Gratitude for my friends, old, new - eternal! - who have laughed and cried, plodded and sprinted, along with me without me having to ask them to do so.

Gratitude for generosity - the generosity of Starlight, in the part they played to get me here, and the generosity shown by everyone who has donated and helped me to give something back. So very close to the target!

Gratitude for these three years at Warwick. Gratitude for my coursemates, the 'Fam', and for the tutors who have inspired me to work hard - and enjoy it. Gratitude for my helpers, both at home and at uni, who have made my time (and the work) not just possible but wonderful.

...And, of course, gratitude for ability in general - the simple things that can so easily be forgotten. Gratitude that I can breathe. Gratitude that I can see, and speak, and sing, and smile. Gratitude that I can be grateful now because, whether I make it any further or not, this has been a wonderful journey - and one on which I'll never regret setting out.

So, yeah, thanks for coming with me - let's see how much more we've got in us.

And thanks for a wonderful year.    

Tuesday 30 April 2013

Day 360 - fractious

I haven't posted for a while (yet again), and I must admit that (due to deadlines) I was on the verge of skipping another day among many, until I received a very sweet message from an equally sweet friend. He expressed his disappointment, as a fellow blogger, at the lack of updates this month - especially as I was at home for most of it and subsequently doing lots of physio and 'training'. This, alongside the realisation that I've somehow reached Day 360, motivated me to give myself enough time amidst essays to blog tonight. I won't, however, give you much of an update - not because I haven't had all sorts of exciting experiences in the remainder of this April - rather because I've got so many important topics clamouring for attention in my brain that I know I won't do them justice if I write them now, jostling as they are with final essays.

The air I'm breathing at the moment, as I approach the first anniversary of my mission (if not quite this blog), has been feeling crackly - crackly with tension, anticipation, fear and joy - as though its individual and usually disparate particles were about to collide and cause a great deal of havoc. Unspecified havoc, neither particularly positive nor particularly negative, but havoc nonetheless. It's fractious - hence the title today. That, though, is a double entendre (albeit one without any raunchy connotations) because I was right - there was havoc brewing.

On Friday, I had a little outing to A&E, with a very sore ankle - and it soon became clear, following a couple of xrays, that I had a hairline fracture (see the titular pun now?). How this came about is hilarious (at least to someone with my wry and twisted sense of humour) because it had nothing whatsoever to do with me. It would appear that not only can I, being a (currently) non-ambulant girl, procure 'runner's injuries' and the afflictions of a 'marching soldier' as I have in the past; I can also fracture my ankle by someone else lifting it up in exactly the same way that they always do.

Since I'm fine, comfortable, and can still stand for transfers, the only possible response is to laugh. We have no idea when it happened and the only treatment is a combination of tubigrip and good sense. So I'll chalk this one up to experience, add it to the list for the sitcom I'm going to have to get round to writing, and take it as a sign that often a choice of word to describe the atmosphere can turn out to be all too apt. I felt fractious and I fractured. Ha. How's that for cosmic foreshadowing? 

    

   

Thursday 11 April 2013

Day 341 - motion sickness

I woke up this morning feeling rather nauseous, something that hasn't been around for a good while. (Important Note: once again, no, I'm not pregnant.)

Great way to start a blog post, hey? Sorry - and you'll be wondering what on earth this has to do with my mission. I'll endeavour to elucidate. A few posts back (in my snow post) I wrote about the speed at which physical improvements have been occurring - and how I'm coping with them, along with the periods of time when physical work isn't possible, because it seems it's either one or the other of these two extremes with little or no middle ground. This post is about the former - the speed at which things have been happening since I've been home for the holidays.

I appear to have been making some rather radical changes over these last four weeks. For the most part they're not likely to be noticed by people other than those who work most closely with me, although some will be, but that doesn't make them any less radical. The thing is, my whole approach to my physicality and the way I move is different. Whether a switch has flicked, neurons are firing in a new way, or something else has happened, I don't know. All I can say, like the true musical theatre geek I am, is 'something has changed within me'. I think it might be a continuation of my newfound ability to notice (finally!) and to celebrate my body as it is, and all the wonderful things it (and any relatively healthy body) is able to do - like breathe, pump blood through my veins, and be alive. But I'm not sure. Whatever it is, it's wonderful - and it's caused such a fundamental shift that my vestibular system is all over the place, as though I'm being repeatedly knocked off balance.

But I don't mind feeling sick as a result, because I'm learning to read my body's signs, so I'm viewing this nausea as just another reminder that I'm on the right track. If it happens again tomorrow I'll try my best to smile - it simply means I'm in motion.

Friday 5 April 2013

Day 335 - a digression, but a related one

This morning the UK woke up to the article you can find here. Now, I view this blog purely as a space to document my progress towards my goal, and consequently try not to veer off topic too frequently, if at all, particularly in relation to politics. (Although I imagine it's pretty obvious by this point that I'm left-leaning, and not just because of my spinal curvature!) This is why I refrained from penning a post on the recent drastic welfare reforms to which the country has been subjected, however much I may (vehemently) oppose them - because, despite the significant impact the changes will certainly have (and have had) on my lifestyle and on those of the people I care about, they aren't directly relevant to the subject of this blog.

Today, though, I'm going to flout my own rule and add my two-penn'orth to the indignation provoked by the evidence of the article linked above - namely pictures of the Chancellor of the Exchequer, George Osborne, standing next to his chauffeur-driven Land-Rover as it was parked in a disabled parking space. A space which, last time I checked, he had no need for - nor, indeed, any legal right to use. If the former reason (lack of need) was not enough to cause the outrage that it has, then the latter (illegal [mis]use of public property, punishable by fine) ought to be a more than sufficient impetus.

I emphasise the illegality of his actions because they come from a man at whose behest the UK government have recently been taking ordinary Britons, their electorate, to task for living in ways with which they do not agree because they do not find them expedient or economically viable. Housing benefit for some of the most needy and vulnerable people in our society has been cut, along with the introduction of a 'bedroom tax' which will affect tenants of council properties which have spare rooms and are deemed to be underoccupied. (Now, I'm all for efficient use of council housing, but not when it means that families quite within their rights to have an extra room are in danger of being evicted, nor when people with disabilities who require carers or PAs are told that it doesn't count. It means that when I graduate in the summer I won't be able to live independently of my mum, although the flat we currently share is adapted for my needs, because a PA 'could sleep on a sofa-bed in the lounge' and doesn't need a room of their own.) These 'reforms' come at the same time as a large-scale, and quite simply brutal, overhaul of the once-trusted National Health Service on which so many people depend - as well as the abolition of the Disability Living Allowance and its conversion into the less-accessible (but sneakily-named) Personal Independence Plan.

As I've said, I wouldn't normally be so explicit about the impact of changes in legislation on my life, and I don't want to turn this post into a rant. After all, I'm lucky enough to be able to speak, and thereby can at least vocalise the problems I face independently of anyone else - and I'm receiving a university education. I am very privileged in these senses, and wouldn't seek to deny it. My only aim in writing about this today is to highlight how many of my friends who have disabilities, and how many people across the country, have been affected and do not have the support available to do anything about it. For us to see today that the Chancellor of the Exchequer (the man who on the one hand has been praising the potential of our 'aspiration nation' and on the other has been accusing us of cheating the system and wasting money) has so little awareness of the lives of people like us that he parks in a disabled bay, is to have a bucketful of salt chucked in our wounds.

In closing, then, as a young woman with cerebral palsy I have this to say to George Osborne - you want my disabled parking bay, you take my disability, too.    

Sunday 31 March 2013

Day 330 - good news

The events which form the content of today's post actually occurred on Thursday, and I'd planned to blog about them then, but when I didn't have a chance on the day it seemed apt to leave it until this weekend. (In case you hadn't noticed, I like symbols, and although I'm not religious, this is a time of year which has significance for a number of different belief systems in terms of new life and fertility and such things - hence my tweet earlier today wishing my followers a happy Ishtar/Eostre/Easter.)

Now, I'm not pregnant. That is not the news. (Part of me is contemplating putting those previous two statements in ALL OF THE FORMATS [like that] to ensure my grandparents, who are very kindly reading this blog, do not get the wrong idea and an unnecessary shock - but I shall refrain.) No - by my references to 'new life' I mean a new lease of life - because it felt like that was what I got on Thursday. To be fair, these last few weeks at home have been awesome (in its literal sense, because they've filled me with awe [etymology geek alert!]), so it wasn't as though there was this major shift in gear on Thursday. It was more that I felt vindicated in what has occurred for me physically over the last almost-year (eek! How did that happen already!?) - because Thursday was the day of my appointment to talk about the future in terms of my body and medical intervention and things. I was scared. It was huge. I wasn't sure what the outcome would be and especially whether my consultant would share the enthusiasm and positivity I've been feeling about my physical state. It had to encompass graduation and life afterwards and, as a rule, orthopaedic surgeons can be pretty, well, surgery happy.

As things turned out I needn't have worried - not only was he very positive, and impressed with my improvements (and sometimes a little confused, because I shouldn't be able to do certain things that I can. Teehee - he, as well as my physio, knows nothing about this blog - don't tell!) but he was also extremely honest. People in the medical profession, and surgeons in particular, often have a tendency to use every tool of persuasion they have at hand (including, but not limited to, scalpels and latex-free gloves!) - so I was expecting something along those lines, if not quite as dramatic. What I got couldn't have been more different - a reasonable, unaffected discussion about various possible procedures and their implications - and, crucially, the acknowledgement that no of them are (or ever will be) certain to make me better. We even decided that, since everything's going so well at the moment, we'll just stick with what we know will work.

So today's good news is...more botox and no surgery for me! Huzzah!       

         

Monday 25 March 2013

Day 324 - pics or it didn't happen

I said in my snowblog the other day that things were happening fast, but I didn't realise how fast.

The titular phrase of this post has been a thing on t'interweb for a while. So I'm going to post a picture as proof of what happened today, for two reasons: a) I've taken a teeny-tiny break from work to write this, but can't really allow myself much longer, and b) I'm not sure how to describe it, other than to say it's something I've not done for a while and didn't know if I would again.

Here you go:

Halfway to Lotus position - bring on the yoga!
I appear to have re-discovered the ladylike aspect of my disposition ;)

Sunday 24 March 2013

Day 323 - in praise of 'The Lizzie Bennet Diaries'

There is a high probability that I will never meet the group of people behind the project to which this post is dedicated, not least because they live 'across the pond' in America. Nevertheless, readers of this blog who do know me in real life will be aware of my love of Pride and Prejudice - along with the impact the novel has had on my journey to where I am today, planning to walk when I collect my degree certificate this summer - so it seemed important to acknowledge how significant this modern adaptation, The Lizzie Bennet Diaries, has been over the last months in providing an impetus to keep going until I reach my goal.

Before I explain the concept behind the series (affectionately termed The LBD), though, allow me to back-track a little. Growing up with cerebral palsy, and as a wheelchair user, I could not engage with the world in the physical way most of my friends did. Cue reading and, especially, Austen - for whilst I could not experience the feeling of jumping over a stile and getting muddy boots in reality, Lizzy Bennet took me there in my imagination. Equally, when her annoyingly loveable mother, Mrs Bennet, complained hysterically of 'such fluttering and spasms all over', I could laugh in empathy, because my muscles rarely did what they were told to and spasms (real, in my case) were a phenomenon with which I was only too familiar.

Through literature, I found a world in which I could participate on a level playing field with my peers, and the fact that Austen opened that door for me as a young girl is a truly a 'debt that I can never repay', to paraphrase Lizzy. As I got older, surrounded by able-bodied peers, I found ways to make the real world more accessible, as I became more able and independent, thanks to physiotherapy, determination and a tenaciously supportive mother - but reading was always my relief. 

Naturally, therefore, when things collapsed for me physically in 2008, aged sixteen, I looked to 'dear Jane' for solace - except I was in such pain from the resurgence of spasms that I couldn't turn pages. I did the next best thing, and alternated marathons of the 1995 mini-series and 2005 film versions of Pride and Prejudice, which somehow got me through studying for my A-Levels and meant I was healthy enough to go to university.

Now, in my final year of English and Theatre Studies at Warwick, I am not only well but well enough to be on a mission to walk to collect my degree (the progress towards which I document on this blog) - and here is where I get back to The LBD. Simply put, I find myself once again indebted to an adaptation of Austen, in this case an especially brilliant series of video-blogs. I mentioned yesterday that during the last term it has been a slog to keep up physical improvement, because of the amount of academic work I've had to do, and this has been one of my fundamental coping mechanisms. Narrated principally by Lizzie Bennet, a post-grad in Mass Communications, the videos form part of her final thesis and detail every aspect of her life, following the plot of Austen's novel (I don't do spoilers, however many centuries a book has been around!). The series, co-created and -directed by Hank Green and Bernie Su, and written and acted by a wonderfully talented ensemble of people, is now nearing its end.

So, since the most recent episode (aside from an adorable Q&A mini-video) is entitled 'Gratitude', I felt I should express mine today. I want to say thank you to the whole team - to Hank and Bernie for the concept; to the writers (especially Kate Noble and Rachel Kiley) for their brilliance and fidelity to Austen (because, despite its contemporary setting, this is my favourite adaptation); to the cast (everyone - you're all fabulous - but especially Ashley Clements as Lizzie) for their passion and commitment to investing their characters with a new vitality; to the crew, for ensuring that every aspect of the production is realistic.

Not only has it been nice to know that it isn't just me who has a huge mountain of degree work to plough through but, as I get closer to my graduation, the videos have helped me realise that I can and will take the (literal!) steps I want to on the day of 'the final exam of my life' (to quote this modern Lizzie). After all, the hills I'm climbing to get there aren't half as unforgiving as those in San Fransisco - and reminder that means a lot.

So thanks, LBD, and congratulations on the well-deserved Kickstarter success - I hope you realise what a difference you've made to all of us viewers.

EDIT: I can't believe I didn't post a link to the videos last night, so here it is. Watch them, they're awesome:

Saturday 23 March 2013

Day 322 - walking in a winter wonderland

Hey, blogsphere, is anyone out there?

I wouldn't be surprised if there weren't any readers left, because my presence here has been somewhat lacking. Not only have I failed to post for almost two months (sorry!) but, in my absence, I missed marking Day 300 of this quest. Shocking and unacceptable. Alas, apparently that's what you get in the final year of your BA - snowed under. So it's nothing short of ironic that today, when I've finally found the time to post, a huge proportion of the UK is experiencing actual snow. In fact, here in London, we can't see out of the skylight in our kitchen.

Anyway, I'm going to extend this instance of simultaneously literal and figurative white stuff into a linguistic device (it's not strictly a metaphor, because it's both fiction and reality) out of which I'll fashion a snow-post, because it's too cold for me to go out and make anything else...and because it's really a very apt description of my life recently.

Over the past few months (which I'll lump together and call 'this term', even though I have posted since it began) I've had a lot of work to do, physically and mentally as well as academically. It's felt at points as if I've been shovelling settled snow whilst there was still more falling - so that, each time I thought there was a little glimpse of progress along the road underneath, further flakes would come and fill that gap. I mean, we've broken up for the holiday now, and I still have 25,000 words to write, most of which are due in the first week of next term. It's been a hard slog, and it's taken its toll on my mind, especially because there hasn't really been time to focus on things other than my course. I've hardly had an opportunity to walk, let alone blog, and that's scared me.

But here's the important (and exciting!) bit - the work, and the break from walking it's entailed, doesn't seem to have affected my body in the way I thought it would. Quite the contrary, actually, because I've not had even the tiniest twinge of sciatica for a good while now. Also, since I've been home I've been getting out and sitting on another chair several times each day, and my standing continues to get stronger and more confident with each transfer. (I can now push myself out of my chair and up to standing with Mama just in front of me for support - I'm not quite stepping on my own after that, yet, but nearly!)

The most fundamental change, though, is in the range of movement of my legs. On Wednesday night I lay on my back and asked for my right leg to be stretched to ease the tension in my hip-flexors, and it was as though my leg grew. That was amazing in itself, of course, but even more so for me was the fact that I could tolerate it. For the greater part of the last five or six years I've only been completely comfortable in a chair-shaped position, or semi-foetal if I'm lying down, so it was a surprise - a very pleasant one.

Then, on Thursday, I had a very spasmy day. This worried me, but with hindsight I think it was just because I gave my muscles a workout they're not used to, and they wanted me to pay for it. Equally it seems that my mind, having been so immersed in work, struggles to keep up with the pace of the changes occurring in my body - so it tries desperately to pull me back into old patterns centred around fear and pain and spasms in order to find some semblance of familiarity.

To this I can only apologise, as I can only apologise to you, dear readers, for not having posted in so long - because this helter-skelter snowfall of change and improvement seems to be worth it. So, sorry, mind, for the confused transition - but thanks, body, for letting me get back to walking today with a view of the snow. Thanks, too, to you readers, for bearing with me through the blizzard. I think the flakes are pointing toward freedom - and I think they're sticking.

I love you. #Walkingby2013   

Tuesday 29 January 2013

Day 269 - 21 again ;)

Don't worry, I'm not having a crisis about my age...yet. I'm young, free and single, and happy to stay that way for a while. No complaints whatsoever. My life's awesome, and my twenty-second year is already proving to live up to that.

It's just...well, I shouldn't be twenty-one, at least not until today. Given that I'm a proud scorpio, and that my birthday was barely two weeks into November, you may well be surprised. The thing is, I wasn't due until today. When I went home from the hospital on Christmas Eve of 1991, I was still slightly more than five weeks premature. My first Christmas should have been in 1992, when I would have been almost a year old.

Big deal. That was twenty-one years ago...so why is it relevant now? Why should I notice it and, more pertinently, blog about it? Well, to put it simply, I'll tell you what today's post is about - luck.

I'm an only child. Everyone who's known me for more than about five minutes is aware of that, because it seems to be one of the first questions I'm asked, and indeed one of the first questions we seem to ask anyone with whom we make an acquaintance. (Maybe it's some kind of social phenomenon.) What I don't tell everyone, however, (because it's served as quite good fodder for the ubiquitous 'true or false' drama game in the past!), is that I'd consider myself the youngest of four.

My mama had two miscarriages and a stillborn before me. The latter, my elder brother Ben, lived for about two minutes (as far as I'm aware) and I can't imagine how difficult that must have been for Mama - and Papa. I've always felt a sort of connection with Ben, perhaps in part because he probably would've had a disability too, had he lived - but also because he and I were the at the same gestation when we were born.

It is a thing that strikes me on this day every year - not just how different life would have been if my birthday were today, but how lucky I am to even be here. Yes, if I'd been an aquarius, I'd probably not be in a chair, but I don't think I'd have learnt as much about (or from) life; knowledge that has helped me grow into who I am today, whoever that is! I wouldn't have the friends I do - I wouldn't have met Jess, or Em, or gone to camp and have the family I've made there. I wouldn't have met 'Team Chariots'...I might not even be at Warwick, and giving back to the wonderful Starlight, which I can't comprehend.

So today, as a kind of rebirth (given that we mark it annually as a family - we're odd that way!), I'm going to reassert my goal for my twenty-second year: to live, to laugh, to love, to act, to sing, to walk, to dance...and to give thanks (and not worry) with every (literal) step. I've always preferred being early to late, but methinks from now I'll just do my best to be on time, and have fun whilst I'm at it.   
  

Sunday 6 January 2013

Day 246 - reflection

I was uncertain whether to post this for two reasons: firstly that it necessarily requires a little back-tracking to before I had a blog, and might seem unrelated to my goal, and secondly that it might come across as a tad sentimental. Nevertheless, the start of a year offers a chance to glance back as well as forward, and I've been doing quite a bit of both. As for sentimentality...you'll just have to bear with me.

So. Here goes.

Three years ago today (on 6th January 2010, through the generosity of Starlight Children's Foundation) I was lucky enough to meet someone who, utterly unbeknownst to her, had pulled me through a rather tough patch - and I was able to thank her for it. This meeting gave me the strength to finish my A Levels, so much so that I now find myself at Warwick University, planning to walk to collect my degree.

You know all that. What you don't know, however, is that last night, almost exactly three years after I met Keira, I did something my eighteen-year-old self would never have dreamt to be possible. I stood for ten minutes (!) as I gave my first ever standing ovation for the absolutely wonderful cast of Chariots of Fire at the end of their final show at the Gielgud - and I felt truly privileged to be there to support them.

It was magical, hugely emotional - and, as I said, something I wasn't sure I'd ever do. So I thought I'd post today about two things: faith, and inspiration.

I don't mean faith in the religious sense, necessarily, though that's all well and good. (I'm agnostic myself, but I have plenty of friends who subscribe to a plethora of different beliefs, along with plenty who resolutely do not.) I mean faith in the sense of self-belief, self-confidence, self-trust; a knowledge that the journey you're on is an acceptable one and that, as long as you stay true to yourself and (sometimes literally) put one foot in front of the other, everything will turn out okay. I don't have much of that, or at least I haven't for most of my life - though I'm beginning to see that that needs to change. Not because I want to be bolder, or filled with more bravado, but because my being constantly enveloped by self-doubt isn't helping me one bit...and it's certainly not helping anyone else.

There are times, such as last night, when I quite literally take a leap of faith, and it feels wonderful. I jumped down two steps, with Mama's help, then stood at the bar of the balcony to clap the hardest I've ever done before - and nothing hurt. My sciatica had disappeared, my spasms were gone, and I know exactly why. I was so caught up in the emotion of the moment, and the desire to give something back to these people who have been so very supportive, that I didn't have time to be anxious. I just went with the flow, and I flew higher than I ever imagined I could.

I'd like to be that way all the time, but I still have far to go; so now to inspiration.

Firstly, my family - especially my stalwart mother, always behind and beside me, often even grabbing the loops of my jeans to prevent me tumbling off whatever precipice I currently find myself on. I love you all, and only wish the world wasn't quite such a big place, so I could see each of you every day.

Secondly, my friends - Jade, Paul, Ruairi, Howes and Ingy, who never fail to make me chuckle, even from as far away as New York. All the fabulous Fam of the Warwick English and Theatre 2013 cohort, indeed the whole of the English Department. Warwick Writing Society. Eileen and Caitlin, two girls I can't believe I've only known since year eleven, because it feels like a lifetime. Jess Hunter, roommate, soul-sister and best pal. My class at Treloar. Shannon and Tena, the three musketeers since we were six.

Finally, my dear Charioteers - a group of people I can't thank enough. You probably won't acknowledge what an inspiration you've been, however many times I tell you, but I'm going to try again anyway - despite being informed by Sam last night that I wasn't allowed to, or he might cry. (Well, you all certainly made me cry, so I think it's only fair I get my own back!) To watch a show in which the cast have invested so much effort and passion and have created such a family, and then to be invited to share that passion and to become a part of that family, has been the most amazingly inspiring experience. I shall be eternally grateful, and feel truly blessed to call you my friends. You should be very proud of what you have done in the nine or so months since Hampstead. Thank you.

Thank you all. So very, very much.

Tuesday 1 January 2013

Day 241 - Resolve

Today is my Gramma's birthday. It's also the beginning of 2013 and, as such, leaves me seven months until I can give her what I hope will be the best present - a picture, or even a video, of the walk I'll take to collect my certificate and graduate.

So I thought I'd blog about that somewhat elusive phenomenon known as resolve. Not only because today is the day most of the world makes resolutions, though that does mean it's apt, but because it feels important to acknowledge that the thirty-one days of December (during the greater part of which month I have not posted, for reasons I hope to make clear) have rather tested my ability to keep my own.

Having promised to provide you, my dear readers (if you are still out there), with a sort of virtual advent calendar in the lead-up to Christmas...well, you shall find out I did not. If I am to be candid, and to break the erroneously-termed 'brave face' I wear as a mask, I shall confess it is because there was little in the way of a daily treat to share. That is to say, not much occurred that those outside my immediate family would call progress. Due to anxiety last term concerning a combination of academic work and the availability of helpers at uni for after these holidays, my sciatica made a reappearance that seems to have been strong enough to override a great deal of the effect of my botox, which has in turn increased the anxiety.

Nevertheless, I know enough about the over activity of my mind to be aware that panic solves nothing, and have therefore resolved not to let it crowd out my logic. Optimism is my natural tendency - it always has been - and it is my intention to remember that this year. For this girl, however premature, my birthday falling on the thirteenth has rendered it a lucky number. I've fallen far deeper into the Slough of Despond than I find myself today before now and, if I got out of it then, I can pull myself out of it for 2013. Walking isn't all there is to walking - there's standing, and even sitting to find your balance, and I sat on my own completely fearlessly over Christmas Day and Eve.

Above all, though, I can understand that things happen for reasons - and that my sciatica, coupled with health-related incidents involving other members of my family (from which everyone is recovering but which I feel it is inappropriate to discuss here) can serve as reminders to put our bodies first, to let them guide us, and to trust that (if we work, take courage, smile and laugh) the goals we wish to achieve will come to fruition...however far out of reach they may seem.

So I hope you'll all be here to join me on this next leg of my journey - you've certainly been here when I've needed you most and, for that, I shall be forever grateful.

Happy 2013!