Post the Hundred-and-Twenty-Fifth - a blog post for Boxing Day

Those of you who have read these ramblings before will notice that the numbers don't quite tally, since my most recent (published) post was very early in the hundreds. 'Published' is the crucial word here, though, because I just haven't had the chance to put up the intervening ones - or, indeed, the posts before them which would really bring this little collection to 125. That said, most of them are written, and soon to be published. 

I also didn't start blogging again on the 16th, mainly because the day didn't offer up the kind of new beginning I'd hoped it would. I'll give more details in the post for that day when I finish it but, basically, I got a new chair (yay!) that doesn't fit and in which I sat even worse (boo!). I'm back in my old one (on the advice of my physio and osteopath) whilst we attempt to sort it out - so I didn't think I had anything of import to write about, because everything shuts down for the holidays.

Why post today, then? Well, it seems I was wrong. After the major disappointment and discomfort of my new chair, getting back into my old one (which I had been desperate to get rid of for good) felt like heaven. That taught me something. The state of my body is not entirely dependent on external factors - far from it! - and sometimes things that are supposed to help actually hinder. The only constant in my life is me - chairs break, essay stress comes and goes (although not without staying for what feels like forever!) but I am still Jessi.

Before I get mired in potentially pretentious philosophical profundity, though, I'll leave off and simply say that I decided to take this as an opportunity to be with myself and explore. To start from scratch as if my old chair were new. After all, I didn't have many other options; my early Christmas present hadn't arrived and I still had to make it through the actual day. 

So I sat in my chair without positioning myself in the precise way I used to do, shuffling this way and that until it was 'perfect', and instead just let my body teach me what its own perfection felt like. Hence this post - because I'm not sure how, but this new strategy worked, and yesterday I had the first day completely free of pain-related tears in a very long time. Possibly even since 2007, when the first inklings of spasm appeared.

Not the most ostentatious of gifts, I know, and not as visible a marker as my blue Balliol hoody. Yet, for all its simplicity, it's the one I cherish most - it means things are changing - and I think it just might have made Christmas this year. 

Pain, you're something chronic, but I don't think you will be for much longer! Thanks, chairs - you reminded me to think outside the box - and that seems rather apt as an ending today.

Happy Boxing Day!

Post the Hundred-and-Eleventh - Letters to my Legs I

Since I posted on the first I've had some really busy days. On Thursday I spent three hours getting fitted for a new chair and seating - at last! - and on Friday I had Botox injections to relax some of the muscles in my legs, before using yesterday to recover. I want to write about both of these days in more detail but, because the next few are also pretty hectic, I won't have time. So, in order that I get back to regular posting, I've decided to offer a short poem each day for your perusal - in the form of letters addressed to my legs - to explain what I'd like to gain from this most recent round of injections. Hope you like.

I

Dear Legs,

Sometimes we don't get on that well.

You squeeze, I shriek, and any attempt

at a truce is almost literally like

getting blood from a stone -

because my muscles have turned to rock.

But I try to remember that 

I am my own Medusa,

though with little need for a mirror 

to show the damage I cause myself.

For all our fights, we are the same.

It seems, too, that flesh and bone are thicker even 

than the healing waters of my beloved hydro pool.

So we make the best of a spasmy situation,

turning tears into teaching, until poison

is palatable - and botulism bliss.

I send you to Coventry, tagging along

for the early autumnal drive,

sleepless though soon to be slumbering,

our mutual silence assured by an aura of anaesthesia

and the swish of a signed consent form.

Now you have our lethal nectar

trickling through your tendons,

will you, my weary wanderers,

call time on your tyranny?

I tiptoe in tentative hope.

Post the Hundred-and-Tenth - on dissertations and dear friends

I'm back!

Having been absent from this blog for quite a while now, it feels somehow apt that I return to writing with my hundred-and-tenth post, albeit a short one to fill you in on where I am in my life. I have finished my dissertation, and consequently my MA in Text & Performance, the first of my two Master's degrees. 

(That sentence will contain a surprise for most of you, I imagine - namely the 'two' - which I will explain in a forthcoming update. I promise.)

For now, though, I just want to express my gratitude for the wonderful people who have helped me get to this point on my journey. This summer has been a rocky one, in all sorts of ways, but it has also reminded me of what fabulous creatures we humans are - how we come together and support each other when we most need it, and find laughter along the way.

So yeah. Soppy returning post done. Thanks.

Love you all

Jxxxx

Post the Hundred-and-Ninth - for Eva

I haven't quite finished the backlog, and I've somehow created even more of one, because I've had so much work to do over the past week and a bit. Even so, this post needs to be uploaded before any of the others, because it's very important in spite (or perhaps because) of how difficult it is to get the words onto paper...or rather screen.

Today is the first anniversary of my dear friend Eva's passing. That is a very odd sentence for me to write, partly because I haven't had a first anniversary like this in a while, but mostly because Eva was such a lively presence that it's really hard to think that she's not here.

Except, of course, she is...because such an irrepressible spirit as hers doesn't just up and leave. So today, amidst the sadness and the disbelief, I find I am also filled with an immense gratitude, for her being there, for being my friend and for making so many wonderful memories for me and everyone else who knew her.

In case you're reading this somewhere, Eva Weva, I want to say thank you.

Thank you for your laughter, so infectious that, no matter how I was feeling, I'd join in - and of course feel much better.

Thank you for your hugs, which were like an envelope of joy.

Thank you for your fierce independence - and fifteen-year-old you teaching fourteen-year-old me that I could have it, too, if I wanted.

Thank you for the (constant!) texts - a comforting reminder that you were always on the other end of the phone. I still have your number saved, and always will.

Thank you for the in-jokes - head-banging to The Killers' Mr. Brightside in Starbucks, for which you ribbed me mercilessly afterwards, before making me listen to Rhianna...and love her for your sake. Having secret chats in BSL about cute boys (after making sure they weren't signing, in case they understood). Pizza and 'anti-Paris Hilton' propaganda in the back garden, because we were drunk on fresh air and happiness. The hilarity at all the ridiculous situations we found ourselves in, mostly courtesy of Jane. Ha!

Thank you for the reminder, by way of the Spice Girls, that all you need is positivity.

Thank you for the love.

Thank you for being you.

Shine bright like a diamond.

Post the Hundredth - the wonders of whisky

I thought that, since I don't have anything major to report in this hundredth post, I could at least write something with a provocative title - and the last two days have given me just the right topic.

Anyone who knows me in real life will be aware that I don't like the taste of alcohol - except for whisky (or whiskey, if it's a JD and coke) and occasionally brandy. Even then, I very rarely drink, despite the fact that it actually has a rather helpful effect on my body - namely relaxation - and I don't get hangovers. Why don't I drink often, then? Simply because I don't feel I need a drink to have fun, as well as the fact that spirits aren't a particularly social beverage, unless, of course, you're with fellow whisky-lovers.

This means that, for all my knowledge about how helpful it is for me, it's not usually the first thing I think of when I'm in pain or uncomfortable...which is probably good? For the last two nights, though, in an experiment to investigate whether it'd help my sleep difficulties, Mama has made me a yummy hot toddy - and it's helped! The discomfort hasn't gone completely, but it's on its way out.

(I should say, to close, that these hot toddies won't be a long term fixture. For all I wanted to be provocative, I don't want to come across as an alcoholic!)

Post the Ninety-Ninth - smile

Ninety-nine posts! (Or at least there will be once I polish off the backlog, which I plan to finish doing tomorrow in celebration of reaching one hundred. I'll let you know if that succeeds.) 

So today, because of that plan, instead of a lengthy post - not that many of the recent updates have been long - I have a friendly reminder. It's helped me hugely over recent days, which have been both busy and rather tough, and I thought it might be helpful for you too.

It's nothing spectacular, but I've found its effect to be. Just pause, take a moment to breathe, and smile. Not in a 'creepy man on the street telling you to smile like you're beholden to do it' way, just to give yourself a private and personal boost - because we all need those every now and then.

Post the Ninety-Eighth - on the importance of a good soundtrack

Several of the posts in my backlog focus on strategies for tackling a heavy workload, so I suppose you could consider this one as part of a series, at least once the rest are up!

I've written before about the solace I find in music, and even posted a playlist of the tracks I used in training last year, so this particular strategy probably won't come as a surprise. (I can't lay my fingers on the links to the posts right now, but I'll add them when I can. Promise.)

Whether it's music that relates to a topic - in the case of my current dissertation, for instance, Baroque and early Classical composers - or just a mix of random enjoyment (which for me, I'll admit, usually includes those same composers anyway) it's often a great tool to de-stress and refocus energy. Different moods or artists may work better at different times of the day, or you may have a go-to track that always helps to pick you up. As with every aspect of life, it's never the same for everyone, and I'm just sharing what works for me. I've never had aspirations to be a lifestyle guru or anything, hehe...

Much love and good tuneage,

Jessi xxx

Post the Ninety-Seventh - moving on up

Today, amid yet more dissertation graft, I had a very important medical appointment. I won't go into the details of it, because some of what was discussed was highly sensitive and emotional, and doesn't only involve me. Nevertheless, I wanted to give some mention of it on this blog, as it is extremely relevant to the subject matter and marks the first point in the process of me being able to make some pretty fundamental changes in my life.

So here's to moving onwards and upwards!

Post the Ninety-Sixth - one girl and her dog (and dad)

Today has been such a lovely day, spent in the company of my dear Papa and my Darcy dog. It was full of hard work, as I blasted off a scene of my latest draft of my play, but it was very definitely lovely - especially because my break consisted of taking said dear dog for a long walk on the Heath. The walk in itself was wonderful, of course, but it felt even more so for the simple reason that it's still such a novelty to me that I can get out there to go for the walk.

Yay for fixed chairs!

Post the Ninety-Fifth - healing hydro

I know, I know. I write about hydro far too much. The thing is, though, my instructor was away last week and I missed out on two sessions. She had a lovely and much-needed holiday, so I didn't mind, but it felt so good (so good) to be back in the water this morning!

Post the Ninety-Fourth - sleepy scrambled eggs

(I've decided that, although I feel super guilty about the backlog, it's better not to create more of one whilst I'm in the process of trying to clear it. So, despite the fact that I definitely haven't got time for long posts right now, I'm going to try and make time for some sort of update each day, even if it's just a sentence of gratitude, until the plethora of backdated posts materialises. For instance, today, I'd really like to write something longer to honour the centennial of the breakout of WWI, but I'm being very strict about my timetable - and my use of electronic devices, in a bid to sort out my sleep.)

Instead I write in homage to my Mama - and scrambled eggs. Sleep has got difficult again (having become considerably better, as you'll be able to read once I've got caught up) and this morning I was really feeling it, and consequently not feeling like breakfast. Or brunch. Or any meal whatsoever. Now, Mama knows that, when I get like this, I need something which is full of protein and which I can eat without much effort.

Cue scrambled eggs, cooked with basil, because plain egg has a texture that I can't always swallow that easily. And because my Mama is a star.

They, and she, provided me with the energy to get through today, to write more of my play (rhyme unintentional) and then to have a lovely catch up with a primary school friend. Huzzah!

Post the Ninety-Third - list

Firstly, I realise that, at the moment of publication, this is not my ninety-third post. Secondly, however, it soon will be - and that brings me to an explanation of the dual meaning of its title, 'list'. 

On a mundane level, then, it simply refers to the fact that (amidst the pages and pages of the play which makes up just half of my dissertation) I am still keeping an (ever-longer) list of dated daily topics for this blog. Yet it also has a deeper resonance, because I hope I may convey how much I list - a (now relatively archaic) synonym for 'want' - to be writing more regularly than is possible at the moment.

I'm not sure how many of you will even be reading this insignificant slice of the internet any more (I imagine very few) but I nevertheless would like to convey my sincerest thanks if you have stuck around, as well as my deepest apologies for letting you down so abysmally on the update front.

Love,

Jessi xxx

Post the Seventy-Seventh - imini emnandi kuwe, Tata Madiba!

Today is the 18th of July and it is Nelson Mandela's birthday. Had he lived to greet it, Tata Madiba (as he is affectionately known by most South Africans) would be ninety-four. It felt very odd writing that last part of the previous sentence. Due to the fact that he was alive for nearly a century, as well as the huge presence he had around the world as well as in South Africa, to be celebrating his birthday in his absence is...new, and I guess we haven't got the blueprint for how to do it, especially with all the mixed emotions that will come up.

However, in South Africa, sadness is always met with joy - and if anyone knows how to party it's us. So hopefully we can honour his day and his memory as he would have wanted us to - with fun, laughter and friendship. I only wish I could be over there myself, but we will light a candle and sing tonight. 

Imini emnandi kuwe, imini emnandi kuwe... 

We love you, Tata.

Post the Seventy-Sixth - perpetual beginning and ending

NB: I should note here that this post is the first in another series of backdated entries so, although it is marked as 17th July, I am actually writing it a full ten days later on the 27th. Again, this is not due to a lack of subject matter, merely a lack of time - for which I once more profusely apologise. Several people have asked me what has happened to my blog, to which I can only reply 'dissertation', before attempting to make amends and catch up. I would say this won't happen again, as I did before, but that clearly wasn't true or successful. So I'll simply try to make my way through the backlog.

Having posted yesterday about the pride and congratulations I wish to give to those of my Warwick friends who have reached their own graduations, and how I can't quite believe it's been a year since mine, today I want to do something similar for my current cohort of friends and colleagues at RADA. For, whilst we have yet to reach graduation, this week brought with it the performances of those of us who decided to stage a work-in-progress piece as part of our practical dissertations. I am writing a play, so this does not apply to me, but I have attended most of the productions. Unfortunately I can't go tonight, because I have had tickets for something else for months, but I know that the performance will be as brilliant as all the others have been.

That is why I am proud. My friends have exhibited the diversity and the complexity of their imaginations, dealing with a range of topics in a variety of different styles, and they have shown the real power and joy of theatre - anything is possible, if you can think it up. Most importantly, they have given it their all, and done so with style, grace and professionalism. If these are 'works-in-progress', then I can't wait to witness the finished articles, should they choose to develop them further.

Yay MA T&P - what a wonderful year we've had!

Post the Seventy-Fifth - time warp

This is a very weird post for me to write, not least because I didn't expect to be blogging still and therefore to have a place to mark it. A year ago on this date (although not this day - it was a Tuesday) I graduated from Warwick and walked to collect my degree. A whole year has passed. How is that possible!? Yet it feels like yesterday - and the thought that I managed it, surrounded by family and dear friends, still fills me with unbounded joy. The memories could not be more vivid.

Somewhat ironically for a literature student, however, I'm finding it difficult to formulate words - and, anyway, today isn't about me. It's about my friends and fellow students from the English dept who have collected degrees of their own this afternoon.

So, congratulations, lovelies! Wish I could have been there to watch and I hope your day has been as memorable as you deserve it to be!

Post the Seventy-Fourth - another homage to hydro

I know I said I wouldn't write about hydro for a while, so apologies for boring you by bringing it up again, but I just wanted to express my unbounded gratitude for the sessions and the positive effect that they have on my body. They're teaching my muscles to open up (and wake up!). They're also really helping my sleep (in general, although the night after I'm always rather achy) for which I am particularly thankful. Exhaustion is not my friend, it's true, but stretches in hot water certainly are - and I love them for it.

Post the Seventy-Third - balance

Suzy came again today and we did some great work. One of the things I have to remember about this process, though, is that slow and steady wins the race - by which I mean that I have to go with my body and listen to what it tells me, rather than going full pelt and then exhausting myself because I'm not quite ready to get there yet. 

It is a tricky balance to strike because I've a tendency to be a perfectionist and overwork myself. I'm writing this post to document my decision that from this day forward that must stop. We'll see how long that lasts, because I'm sure I decided something similar  during Walking by 2013, but I thought having it written down might help.

Post the Seventy-Second - brain games

Last night we went to the Young Vic to watch the final performance of The Valley of Astonishment. It was a co-creation of Peter Brook and Marie-Hélène Estienne, an ensemble piece beautifully portrayed by (the magnificent) Kathryn Hunter, Marcello Magni and Jared McNeill, along with musicians Raphaël Chambouvet and Toshi Tsuchitori. There was no plot as such. Although the narrative was centred around the story of Sammy Costas, a woman with a particularly fascinating memory, the piece was more concerned with the insights that she (and other characters, multiroled by her fellow actors) could offer into the workings of the human brain than what actually happened to them individually throughout the course of the play - most of what would be called 'plot' came from back stories.

Aside from Sammy, there was a man whose synaesthesia caused him to see colours whilst hearing music, and another guy whose paralysis had destroyed his proprioception (his sense of his body in space), which meant he had to use his eyes to direct his movements. If he couldn't see, he'd fall over - and this is where I was most intrigued.

When I was little, I was often asked to be a 'model' for physiotherapy students, and to participate in training courses. The students would work with me (and other kids) every day for two weeks or so, hoping to gain a deeper understanding of paediatric physical disability. I did loads of rounds of this sort of thing, over several years, but naturally there are particular incidents which leap out of my memory. 

The one relevant to today's post involved the course leader asking the students to watch me sitting independently on a plinth and to note the stability of my trunk and how well my feet were grounded. He then blindfolded me with a towel, and I crumbled, feeling really wobbly and completely off-balance.

I learnt a huge lesson that day, never mind the students: I hadn't realised how much I was using my eyes until they were taken away, if only for a moment. All my focus and concentration was rooted in my sight, but it was so unconscious that I'd failed to notice my reliance. Since then, for about the last fifteen years, I have worked to improve my proprioception - and I think I can now safely say that I can do most things without the involvement of my eyes being absolutely necessary. Even so, after a while I begin to feel wobbly and unstable, and I'm not yet back to the place where I can sit on a plinth (or the edge of my bed) on my own and feel totally secure.

I identified with that particular character a lot, feeling great empathy for the manner in which he lived his life, and his story provoked many different emotions for me. It made me think about how everything is relative. In some ways, he is condition was much more severe than mine. After all, cerebral palsy doesn't equate to paralysis (as I am so often having to remind people!), and I don't fall over if I shut my eyes. However, I often feel as though I might, and I know my issues with proprioception are responsible for the motion sickness I sometimes experience in the car. Moreover, he had managed to get himself back in to better physical shape than I have, and he could walk. This would leave him as the more able of the two of us in the eyes of medical professionals, were it possible to compare a real person with a fictional character.

So, thanks to the concept of relativity, the subjectivity of human experience and our ever-growing understanding of the abilities and possibilities of the brain, I am inspired. If a man with difficulties with proprioception which affect him so significantly that he falls over if he closes his eyes is still able to walk, then so am I. So will I. More than that, I'm well on the way, and I'm hugely enjoying the journey through my own valley of astonishment.

Post the Seventy-First - silver linings

I thought about calling this post ate seven', but that would've been disingenuous, because nothing has actually happened with my chair since I last wrote about it. Or, rather, nothing bad has happened. So I chose the title 'silver linings' because today I think I discovered one of the reasons my chair broke.

I don't believe I've mentioned the number of chairs we've had in this house at various points over the last few months. There were five, none of which worked. Two are perhaps obvious - my broken electric and a new manual the wheelchair clinic had sent but which wasn't modified appropriately for me to use. The other three were as follows:

1. my old manual, which no longer has a backrest or a seat
2. my old electric, kept in case of emergencies after the wheelchair clinic said they'd just scrap it, but no longer suits my needs and we've finally decided it must go.
3. an electric that a friend was no longer able to use, lent to us for my Papa to modify, if at all possible

It is this last one around which my post centres today. Papa was given free reign, so he took it away to perform the necessary adjustments (hopefully). Due to the fact that my friend has to have her chairs driven by an attendant, the joystick was positioned at the back, so the first thing he had to do was move that to the front. In fact, we thought that was the only thing he'd have to do, aside from some minor rewiring. It turned out, however, that the back brackets weren't compatible with my backrest and the footplates couldn't quite be persuaded to get to (or to simulate, with some help) a 90° angle.

So I couldn't use it, and it has sat rather forlornly in our passage - until today, that is.

One of my former helpers has two boys, the eldest of whom is sixteen, and a keen footballer. Unfortunately, in the last year, he has had to undergo treatment for brain and spine tumours. I won't go into details, because it isn't my story to share, but the effects of the treatment mean that he now finds it difficult to walk for long distances and hasn't really wanted to leave the house too often.

Mama and I were going to visit them today, when we suddenly thought about the chair, and the possibility of him using it. We phoned and asked if he'd like it. The answer was a resounding yes! I stayed at home, because we can't fit two big electric chairs in the car, and Mama went to deliver it - and when she came home she couldn't stop grinning and telling me how delighted he was to be able to play with his friends again without getting tired.

So I think that's why my chair broke. If it hadn't, we wouldn't have been given the other one to modify, and wouldn't have been able to offer it to him when it didn't work for me. The thought of his delight makes every single minute of the time I spent without power worthwhile.

I really mean that last sentence. I know what it's like to feel trapped by your body and unable to join in when you so desperately want to, and I'd do anything to ensure that he and others have a way out of that experience. That's why I'm fundraising for Starlight, of course, and why I will continue to do so for as long as I can think up new and innovative ideas. Yet it also felt super special to be able to grant a wish of sorts myself, not through money, but through coincidence of circumstance - being the right person at the right time.

Let's put it this way - I remember the freedom I felt when I first tried out a powered chair, aged five, and then when I got my own at the age of seven. To have been able to give that freedom to someone else feels even better.

I'm just so happy he can go out again. Now we can race ;)!

Post the Seventieth - cut off

It seems apt that my seventieth post is one filled with joy. You might not guess that from the title, though, so allow me to elaborate. 'Cut off' is there because it has two potential meanings for me. The first is isolation and, indeed, I've been well-acquainted with that feeling. The second can evoke new beginnings, however, and it is that to which I refer today.

After more than two months of being able to leave my house only on rare occasions because of my chair, my hair had grown rather long. My hairdresser is just around the corner, but they have a tiny step that requires the power of my chair to get up it, and I had to wait. So to celebrate my chair being fixed at last, yesterday (as well as having my wonderful lesson) I went and had it chopped. I haven't taken photos, because it's simply been restored to its usual bob (and it's extremely difficult for me to take a selfie!), but it feels fantastic, as well as symbolic that I marked the end of one 'cutting off' by having another! Puns, puns, we love puns...!