Saturday, 26 May 2012

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? 


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