Day 24 - getting a Handel on my new body ;)

Apologies for skipping yesterday's post - had an essay to hand in and was a little busy...Okay, that's an understatement. Today I started another one, too, so that's three to go (and ten thousand words - woot) before the end of term, plus two exams. Lizzie insisted I go out, though, because I've a tendency to become a recluse if I have a lot of work. Perfectionist, moi? Never.

She booked me an hour in a practice room, so I went; and I sung my heart out. I'm a mezzo-soprano, and have been having lessons since the age of fourteen, but have only recently begun to be confident in my voice. What's this got to do with my mission? Well, on Sunday I spoke of Rosalind, which is a breeches role, as it involves a woman taking on the guise of a man. (In Shakey's time, of course, it would have been a man - boy - playing a girl, playing a boy, which is fascinating.) As a mezzo, I get to explore similar dynamics. A lot of people complain about being 'stuck' with such roles - but I love them. This probably has a lot to do with the fact that Handel loves them (loves us mezzos, full stop!) - and the equal fact that Handel is about as high in my musical estimation as you can get. If I weren't an atheist, I'd call him God; I probably have.

Anyway - because I'm not walking at uni, the need for some form of exercise is a great excuse to sing. Not that I really need an excuse, but I'm quite shy, so I can't/won't/don't sing in my room in halls for fear people will laugh. It took some convincing on Lizzie's part to get me into the music centre, but my body was crying out for the physical exertion, and it won. Maybe I'm finally learning not to over-analyse my feelings.

Having said that the exercise is good for my body, the changes in my physical state appear to have been just as beneficial for my voice, so it seems it's a two way thing; which brings me back to Handel and my awful pun. One of the pieces I'm currently singing is 'Ombra Mai Fu' from Serse (Xerxes) and it's really helped me with homesickness, though perhaps the homesickness is helping the song. I find I become totally immersed in any and every part. It's about a plane tree, and I imagine I'm in our lounge at home, looking across at the ones on Hampstead Heath, before visualising walking over the fields.

It's not really a technique, as it isn't deliberate, but it's nevertheless similar to what happens when I sing another of my favourites - and one of my few non-Handel or Mozart pieces. In Ambroise Thomas' version of Mignon, the eponymous character sings an absolutely beautiful aria called 'Connais-tu le pays?'. (It's also known as 'Kennst-du das Land', but the French is better.) Mignon isn't strictly a trouser-role, as she's a girl, but she was raised as a traveller and doesn't conform to typical late-eighteenth century expectations of women. This is precisely what 'Connais-tu...' is about, as she believes for the greater part of the opera that she is an orphan, and is desperate to find her homeland and place in the world. She is in limbo, like Rosalind and Viola, and like me. Yet, also like them, by the end she is granted (indeed she grants herself) happiness and peace - as I, too, hope to find.

For now I'll keep singing and plodding - and remind myself of this little boy:

Come along with us?

So much love to you all.

Day 22 - a vindication of visualisation, and the solace of Shakespeare in the sun

I've said on this blog before that when I'm at uni, because I'm not walking every day, I often wonder if I can keep up the momentum of this mission. Yesterday, it turned out, was to show me how wrong I was to think in this way; and it constituted a breakthrough. (I deliberately didn't mention it in my 'day 21' post - that was mammoth enough, and I felt this deserved a post of its own.)

Lizzie and I went to see 'WUDS in the Woods' - an open-air performance of As You Like It. I love Shakespeare. You can't beat the bard in my books - especially if, when it's a traditionally-styled production, you serve him well. They did: live accompanying folk musicians, singing and dancing. Dancing. I must admit that this is the one aspect which usually gets to me, however much I love it, because it reminds me that I can't do it myself. Not so yesterday - my feet tapped in time to the music - and it was utterly magical. Whilst it of course had something to do with my newfound, re-motivated state of mind, I think it is more of a testiment to the brilliance of the production - and particularly Kate Thorogood's awesome take on the role of Rosalind.

I don't know much of Kate, but what I do know, I like. After all, what's not to love about a girl who's obviously, from our few meetings, a genuinely nice person, is an accomplished actress, a superb singer (and a fellow low-register dweller, she being an alto who occasionally dabbles in mezzo roles)? I'd certainly like to get better acquainted with her - maybe we can gush over Handel and Ferrier as well as Shakespeare.

Anyway, Rosalind and the dancing. I adore Rosalind, just as I adore Viola. I love Desdemona and Lady Macbeth and Juliet and Ophelia, too, just not as much as the other two. Maybe it's because they're girls who don't quite fit, roles that are in limbo between two places; and I identify with that. For most of my life I've tried to work out where my place is, whether I'm anything more than a bridge between my two worlds - that of the able and the disabled - feeling overwhelmingly that I'm an able-bodied girl who just happens to sit in a chair.

Yet there was a crucial difference between the plights of banished Rosalind and shipwrecked Viola, and my own situation - or so I thought. They could dance, and I could not, so I never fully invested myself in their characters, as a kind of self-preservation. Yesterday, though, that changed. Watching the performance, I never once felt conscious of my chair and all its implications. That's the first time ever that that's happened in my waking hours (I always walk in my dreams) so it was a really big deal. Then, when they were dancing at the wedding, I didn't hear my inner wistful voice; instead I found myself thinking 'Yes - I could do that.' I can add dancing as Rosalind to my list of visualisations, along with leaping over styles as Lizzy Bennet and climbing trees as Jo March.

So thanks, Thorogood, and congrats. You were thoroughly good ;)!    

Day 21 - the story so far

I have pictures, which means one thing - today you'll get the long-promised progress report. I'll be frank, though, because I was unsure how far back I ought to go. I'm not one to dwell on difficulties; my life philosophy has always been that it's more fun to laugh than cry. So whilst, yes, the road I've travelled to get here has been a long one, with its ups and downs, that's not the point tonight. It isn't the time to go over the avalanche that was 2008, except to thank all of those who are my support now, and were then, for sticking with me. I feel truly blessed to call you my family and friends.

A short paragraph will more than suffice - I couldn't read independently. I couldn't turn pages because it took all my effort to sit up, and I spent most of the day lying down, to cope with the spasms. For a bookworm and geek like me, that was the very definition of torture, but that's enough acknowledgement for now, and perhaps ever. You see, thanks to my mother, Jo-Jo, my soul sisters...and, honestly, Keira Knightley, I did make it. Three months of watching Pride and Prejudice on a loop later, I went back to school. In March 2009, I kicked my drugs. Then, in 2010,  Starlight, a wonderfully inspiring charity, granted my wish to meet Keira. I thanked her - and I'm still so grateful today - because she and Starlight genuinely got my life back on track. I wonder if I'll ever be able to repay that, however much fundraising I do? I hope so.

Now I'm at Warwick, reading English and Theatre, the two subjects I love most in the world. Keira and Starlight have been with me all the way - in essays on The Children's Hour, in productions, in crazy plans involving writing a novel in a month, in my constant gratitude that I'm here. In fact it was Keira who today (unknowingly) reminded me why I'm on this mission. Why now is the moment to straighten my back, to take advantage of the botox and not to let anything dampen my determination to stand (and walk) on my own two feet. To work to throw away the fear and let the lifelong dream become a reality. She went to Chad as part of UNICEF's Socceraid. You can read her diary here, and do, because it's all wonderfully written; she clearly takes after her mother in that respect.

For now, though, I'd like to share with you the story that most hit home with me - that of four-year-old Idris. He contracted Polio at the age of one, and is paralysed from the waist down, but during his sessions at a rehab centre, with the help of paralell bars, he, in Keira's words: 'used his upper body to move his legs. He was exhausted by the end of it but he wouldn’t sit down. Stood and stared at us with solemn eyes [...]' My thought, upon reading that, was 'if he can do it, I can - because I've got malleable neurology to reconfigure, and not paralysis to fight, even though I've never walked independently before'. He's lost something, perhaps forever, but is still going; I've never had it, so I've got everything to gain, if I keep on. I might print out his picture as inspiration - do you think he'd mind?

Idris at the Centre d'Appareillage et de Re-education in N'Djamena, Chad

. Source - UNICEF

I suppose I'd better get on with my progress report.

I had my ninth (possibly tenth, I lose track) round of botox on 4th May; something I was simultaneously nervous and excited about, because it was with a new consultant, and in a new hospital. A couple of weeks before I'd had an appointment with a colleague (I stress, colleague) of my spinal consultant, who had been quite negative, and even got my diagnosis wrong in his follow-up letter. He hadn't bothered to do a physical examination, either, so I was interested to hear Mr Pattison's opinion when he completed his exam whilst I was under GA. (Some people collect tattoos - I collect cannula scars.) He was realistic, but positive, and his mention of my tightness was tempered by his admission that he couldn't tell whether my left hip was out. So, armed with the knowledge that I continually buck medical trends and that I know my own body best, we went home. 

The next day I asked Mama if we could walk across my room. We did and it was magical.

Mama and I at the window - 05/05/12

Understandably though, she was exhausted, so she suggested that we try the hoist. I had to overcome years of fearful associations with them, going right back to early primary school, but I did - and it was magical.

Doors opening, literally - 05/05/12

That weekend, I walked about fifteen times, my legs getting stronger with every shuffle; then I came back to uni and practised being patient, by visualising walking. I've got quite good at both of those things over the years. On 16th May I went back home to London, worried that the time away might have had an impact, but also hopeful that my psychic perambulations would have made a difference. I wasn't disappointed. As I said in my first post, I was now able to take isolated and differentiated steps with each foot. I was standing much straighter, too, see?

Straightening up: wearing Jo-Jo's Paris Marathon 2012 t-shirt for motivation - 22/05/12

So there you have it - the story so far, and who knows what I'll do next time I'm home? Now I just have to ditch my friend the hoist!

Thank you all for reading. I love you for journeying with me. Let's keep plodding, eh? 


      

Day 20 - get your groove on

I did say today's post would consist of a full progress report, but it turns out there were three issues with that idea. Firstly, I'm utterly cream crackered (Cockney rhyming slang for knackered, to aid non-Londoners) with all my essays and revision, so haven't got the headspace today. Secondly, my dear Mama is similarly overworked, and has been getting up at 5am, due to her dissertation and her other e-learning module development project, and I haven't the heart to ask her to upload the latest photos. Thirdly, tomorrow's day 21, and my inner number-geek thought it would be symbolic to write the report on that day, since I'll be 21 by the time I've completed the degree-collecting stage of my mission.

So, I hear you ask, what is today's post going to be about? Well, because I've been working so hard and staying in my chair, my body's being a tricky thing. My muscles are stiff, although thankfully not spasmy; the botox took care of that. Then, because I'm so tired, I'ven been sleeping in. The short-haired Jessi is an animal for whom this is not a good idea, if she doesn't want even stiffer muscles, but it's a catch-22.

Anyway, to put it simply, this here body of mine wants movement, preferably of the walky variety, but it can't have it because I'm not at home and my helpers can't do much as a) I'm not confident and b) I'm not yet steady enough for it to be totally safe with anyone except Mama. This is the kind of knowledge that makes for one hell of a deep despondence, which is rare and annoying, as I'm generally a glass-half-full kind of girl. Cue the mother of all coping mechanisms - a Positive Thinking Playlist* - which is what I'd like to share with you all on this fine summer's evening.

 *NB Not all of these are directly related to walking - some are just feel-good.

So, here goes:

My Body is a Cage - Arcade Fire
Bohemian Rhapsody - Queen
Feelin' Good - Nina Simone
I've Got the Sun in the Morning - Betty Hutton (Annie Get Your Gun soundtrack)
These Boots are Made for Walkin' - Nancy Sinatra
Walking on Sunshine - Katrina and the Waves
Minature Disasters - KT Tunstall
Defying Gravity - Kerry Ellis (Wicked Original London Cast Recording)
Part of Your World - Jodi Benson (Disney's The Little Mermaid soundtrack)
Little Acorns - The White Stripes
Whistle a Happy Tune - Deborah Kerr (The King and I soundtrack)
Wonder of Wonders - Leonard Frey (Fiddler on the Roof soundtrack)
 Effect and Cause - The White Stripes
Waking - Bo Bruce
Heal Over - KT Tunstall
Wake Up - Arcade Fire
I'm Gonna Be (500 Miles) - The Proclaimers
Sing - The Carpenters
Run - Snow Patrol
Sing - She and Him
Doo Bee Doo - Freshlyground
Dreams - The Cranberries
Hold on to Your Dreams - Bianca Nicholas (a fellow Starlight wish-child)
Accentuate the Positive - Sam Cooke
Fix You - Coldplay
You're the Voice - John Farnham (especially the Colin Morgan/Bradley James version!)
Only in Your Head - Marketa Irglova
Cast a Light - Bo Bruce
Don't Look Back - She and Him
Human Angels - Freshlyground
Light Surrounding You - Evermore
Keep Your Head Up - Ben Howard
Don't Stop Me Now - Queen

There you have it, with a closing caveat - this playlist has grown over the years and is an amalgamation of various versions of equally various compilations along similar themes, so it's quite possible that in my slightly fuzzy state I have let a genuine staple and favourite slip from my mind. I shall add things if I recall them - such is the gift of the edit button hehe!

Hope you're all walking well. Keep going with me, please?

PS Congratulations to Keira Knightley on announcing her engagement today. Can I walk to your wedding please, dear, since you're the one who's got me through the past four years? Much love and thanks, in any case.

Day 19 - Essays

Apologies for the lack of postage. Essays, essays and more essays. Full update tomorrow evening as I'll have handed this one in.

Meanwhile, keep plodding. I certainly am.

Day 17

Back to uni today, so this'll just be a short one as I haven't got any more majorly exciting events to report. Just plodded along in the hoist this morning for the last time in almost three weeks; I can only do the actual walking at home, you see. Nevertheless the blog shall most definitely not be quiet, because less new developments mean that I have time to bring you up to speed on my achievements so far. I'd hoped to do so today, admittedly, but I've not got time amid essay writing for a lengthy post and I don't yet have all the relevant photos I want to upload. Patience is a virtue, virtue is a grace, haha! (An axiom with which my life has made me very familiar.)

Thanks for hanging on with me!  

Day 16 - never been blogged

Let me firstly acknowledge that, on the surface, 'day 16' of a project must seem a rather odd place to begin documenting it on a blog. Secondly, though, I shall give you an analogy - this process is feeling more and more like a pregnancy, as my body prepares to give birth to its new self, and you don't spill the beans on a pregnancy until you're absolutely sure it's happening. Even then, things don't always go to plan.

(I should know. For those of you not acquainted with me in 'real life', the reason I'm on this mission is that I was born very prematurely, at 28 weeks, and developed Cerebral Palsy as a result. Due to this, I have used an electric wheelchair for most of my life and, in 2008, had an extremely difficult time physically. My hopes of walking independently, which I have always held, were almost completely dashed. It is only very recently, in part thanks to my mother's Masters thesis on parent-baby attachment following pre-term births like mine - though for a myriad of other reasons, too, most of which I'll illustrate in the coming weeks - that I've been able even to contemplate recommencing my journey.)

Anyway, to return to the comparison with pregnancy, you wait until at least 12, maybe even 16, weeks before you tell anyone - except (maybe) a select group of family and friends. That's what I've done, if you change 'weeks' to days. Until now, I've been quite circumspect about what's been happening, though admittedly I've posted a few photos on my Twitter account, the following of which amounts to less than 80. I didn't want to get too excited before I got my confidence up; and, to the greater part of this planet's population, a 20-year-old girl taking a few hesitant steps supported by a standing hoist wouldn't seem much of an achievement.

Today, however, something different occurred. I still used the hoist, so it wasn't anything like overnight independence, but I was taking all of my weight, and not sagging into the harness, so that I could actually take isolated and differentiated steps with each foot. This, coupled with the fact that Mama handed her dissertation in today, made me feel like now was the time to begin the blog that people had suggested; time to document the daily steps I take towards my goal of walking independently to collect my degree this time next year.

I hope you'll enjoy the journey with me. Here's to walking by 2013!