#WordyandWheelyWednesdays: One-person wonder

Hello my lovely readers!

Firstly, hugest thanks for the overwhemingly wonderful response to my extra post on Sunday, regarding my renewed resolution to improve my physicality - the support is very much appreciated.

Secondly, in relation to that, tonight's (much shorter!) post is essentially to document a rather exciting - and speedy - development. One of the main impetuses for my efforts, as mentioned on Sunday, was the difficulties I've experienced in recruiting enough Personal Assistance. These have been compounded by a number of different factors, but one of the most significant is that fact that I have, for the last eight years, required two people to help with all personal care - because that stretches my limited hours allocation even further. It also makes it difficult to organise logistics and can often mean that I have to hold on if I need the loo unexpectedly.

Due to this latter difficulty (which can often cause great discomfort), and spurred on by my independent standing at Wicked over the weekend as well as the increased strength that has been steadily developing in my legs, my lovely Fiona and Lynda suggested that we should try out a one-person transfer - since this is what I do with Mama. 

Cue a controlled experiment in the spaciousness of the bathroom at my Leamington flat, with extra hands on call should they be needed. I am extremely pleased (and relieved!) to say that it worked and, moreover, was safe and comfortable for everyone. Huzzah. There are still elements to fine-tune of course and, for now anyway, this will mostly be a contingency for when there aren't two people around. Nevertheless, this was a huge breakthrough, on many counts - not least that my confidence in my independent abilities has increased enough for it even to be a possibility. 

I was able to trust that my legs could support me without the safety net of someone behind me - and they lived up to that trust!

I haven't got photos because of the delicate nature of what we were attempting (a little British coyness to balance out the frankness of my last post!) but hopefully you'll feel the glee that emanates from my words. This development will increase my independence exponentially, and it's a sign that I'm regaining the ability I had prior to the tumult of mid-adolescence. So, however preliminary these changes might be, they are a cause of great celebration for all of us - I'm on the way to standing up for myself once more, both literally and figuratively!

On that joyous note, having promised you a shorter post, I'm going to sign off.

Love and gratitude as always 

Jx

Beginnings (copyright Jessi Parrott February 2017)

Racing stripes

A relatively short post this evening, as it's been a very long day. In recompense, however, I'm going to write an extra one tomorrow - I hope that's okay. (I've also recently been figuring out how to queue posts, in preparation for when I head off to camp, so in theory I'll be able to write entries in advance to be uploaded at certain times.)

Today's post, then, is a further ramble on my sitting position - the improvement of which is encapsulated in the top I was wearing. I'll add a photo from today if I can find one that's decent, otherwise I'll find another, once I'm not on the mobile version of Blogger. For now, though (and in the interest of anyone who might be using a screen-reader, since they aren't always great at translating images to speech), I'll describe it: it's machine-knitted, long-sleeved and decorated by a colourful, alternating pattern of horizontal stripes. It also happens to be the first item of clothing I bought independently, not just with my own money, but going into the shop and completing the entire purchase, with all the rigmarole of having a single hand with which both to drive and hold and then pay for it, on my own. I've had it since I was eleven, I love it, and it still fits. (The post on being skinny is for another day.)

The point of that added bit of history is that it felt a very apt choice of garment for today - especially when Mama made the comment that she did. She picked me up from a show at the National Theatre (about which I'll write properly tomorrow) and, whilst we navigated one of the smallest 'accessible' toilets I've ever encountered, said, 'Your stripes are exactly horizontal. When last do you remember your stripes being exactly horizontal?' This might seem both obtuse and insignificant, but she meant that she's so used to the stripes being slightly skew, because they naturally follow the line of my torso. The fact that she noticed their symmetry shows that I'm sitting more symmetrically - not all the time, but more frequently.

I'm beyond thrilled - because it means that I can feel more confident about wearing slightly more figure-hugging outfits. Not that I do so often - I love my hoodies and baggy trousers and haven't worn a dress since I was ten, by my own request - but it's nice to feel I have the option. Here's to racing ahead with recovery and reclaiming body image, eh?

Bringing Flexi Back

Did I just make a pun about my spine using a Justin Timberlake song lyric from 2006? Yes. Am I ashamed? No. Actually, I am a little, because a) the song is highly problematic in its culturally-appropriative and heteronormative discourses and b) it's nearly ten years old, which shows up the questionable music tastes of my much-less-politically-aware teenage self. With that as a caveat, then, I shall proceed with today's post - because it was too perfect a summation of the topic to ignore.

As will be obvious from the titles of my previous blogs (Walking by 2013 and 2015) my focus, for the greater part of the last few years, has been on my legs - or, more accurately, my limbs. The reason for that is twofold. Firstly, I was training to walk to collect my degree, and for walking, in the literal rather than colloquial sense of the word, one principally requires strong legs. Secondly, when my chair broke, it had such a detrimental effect on my core abdominal stability that I (somewhat ironically for a non-ambulant individual) didn't have much else to keep me upright other than those legs and arms.

Since I got my new chair, though, my stability is much improved. This means that I actually have the energy to work on my core again and to get the muscles back into the habit of supporting me. It also means I feel safe enough to move in a more flexible way. These are both hugely important if I want to maintain and extend the positive difference my consultant has observed in my spine. So, over the last few days, I've been incorporating exercises which have more emphasis on my upper body - from the mission of trying to reach my toes to (slightly less adventurous) diaphragmatic breathing, the latter in preparation for my first singing lesson in an absolute age at some point this week. 

Hopefully, if I keep up this regime, I've got a chance of bringing 'flexi' back - and maybe even the original JT lyric...who knows!?

Spinal countdown - #LovemyNHS

Today's post is a bit more detailed, and full of many emotions, but hopefully once you've read it its importance will be clear - both on a personal and a sociopolitical level. Bear with me!

This week, but especially last night and this morning, I have been a great big ball of nerves. Why? Well, today was my annual review appointment with my spinal consultant, and I was worried. Those of you who read Walking by 2015 might remember my joy, in May of last year, when he told me that my curve hadn't changed since our last check up in 2012. The thing is, May was only one month into life with a broken chair, and little did I know then how long I'd be left with it - or what an impact it would have on both my physical and mental health.

This time I was well aware of the beating my body has taken over the last fifteen months, so I was fully expecting the X-ray not only to be different but to have drastically deteriorated. Hence my anxiety - which led me to tweet banal and blackly humorous puns like 'Destressing before tomorrow's hospital appt by listening to The Kinks...because my spine has a few?' last night and to skip breakfast due to a swarm of particularly persistent butterflies in my stomach this morning. I was only slightly comforted by the appointment being at Guy's hospital (first established 1726), and the thought that I would be surrounded by reminders of my beloved era (though its original title, 'The Hospital for Incurables', might've served to remove the last vestiges of that comfort!). Ah, eighteenth-century bluntness! I suppose, at least, they didn't unnecessarily sugarcoat things. Bad news was given up front, like ripping off a plaster, not that they could do that then because Elastoplast hadn't been invented... These were the sort of over-analytical thoughts with which I attempted to console myself as we drove to Southwark, listening to thirteenth-century dance pieces on Radio 3 in the absence of any Baroque. Because that's how I roll.

Here is where we shift emotional gears, from jitters to joy. It turns out I needn't have been anxious - not only were there three lovely and understanding radiographers, and an X-ray chair which meant I could have it taken whilst sitting in a comfortable position, but the outcome was good. When I met with my consultant, the first thing he said was 'Wow, you're sitting better!', and, when we were examining the image, it seems that my spine has not just stayed the same but may actually even have improved! I'm rather thrilled by that, for obvious reasons, if slightly overwhelmed - I wasn't aware that it was possible for a curvature as severe as mine to get better (however marginally). I guess I'm  continuing to do what my paediatric orthopaedic consultant said I did, way back when I was twelve - bucking trends! (Or maybe I haven't given the Oxford cobbles due credit...!)

Mostly, though, I'm grateful. Super grateful. I don't have to have surgery, which is a huge relief, and it shows the benefits of a working chair, suitable seating and good postural management. If the difference in my seating position is noticeable just three weeks after I got my new chair, imagine the possibilities for further improvement before my appointment this time next year! It also underscores the value of a working and well-supported National Health Service, without which I and many of my friends would be unable to receive these regular checkups and continued care. For all my frustrations regarding the delays with my chair, I'm very conscious that they were largely a result of the increased workload (and decreased numbers) of staff with few other options thanks to copious cuts. I'm also extremely aware that the people I met at Guy's today (from the receptionist to the radiographers I mentioned above) are working under similarly difficult conditions - yet they went out of their way to be friendly, helpful and understanding. Jeremy Hunt should take note and give them, and their colleagues nationwide, the thanks and support they deserve. To use a metaphor appropriate to this piece, they have more backbone than he and the rest of this government put together. 

Which returns me to my spine. It's not perfect, but it's fine, and that's such a relief. I can sit up, and it seems my sitting up is making a difference, for the better. To celebrate, Mama and I went for a zoom along the South Bank, and I took the opportunity to indulge my thespian self by taking the photo below at the side of the National Theatre. The finger is publicity for the current production of Everyman, but its angle also shows just how well I'm sitting now! (Right, that's enough emotional rambling from me. Suffice to say that this spinal countdown is well and truly over. Huzzah!)

#IamEverywheely ;)

The words and the wheels

I'm not new to this blogging lark. In fact I've been boring unsuspecting visitors to my corner of the blogosphere (or those who I forcibly brought here through excessive Facebook and Twitter linkage) for some time now. At least since 2012, when I started my training to walk to collect my BA on graduation day, and the page that went with it, Walking by 2013. Then I set up its sequel, Walking by 2015, when my wheelchair broke in April of 2014. Readers of the latter will have noticed, though, that my posts petered out in December...and probably thought (as I did) that that would be my final foray into this medium. 

The reason for that was my chair taking rather longer to be fixed than I had hoped (fifteen months, in the end!) and the consequent strain on my body. Basically, I was in such discomfort that there wasn't much of a project on which to report, and I didn't really get the point of publishing just for the sake of it. Particularly whilst I was in pain and trying to navigate the surprisingly physical challenges of a second Master's degree (but more on those later).

My chair is finally fixed, though, which means I can sit up again - and, having spent the last nine of those fifteen months with little space for anything other than essays, I've realised how much I've missed writing posts like these for fun. Not to a specified rubric, not with a particular tutor in mind, nor in the hopes that anyone will necessarily read them - but just because it's something I enjoy. Also, not having a fully working or workable mode of transport for so long has made me more fully appreciate the freedom my chairs have afforded me - and the possibilities that this new one is helping me to rediscover. I am slowly coming to understand how these two aspects of my life combine to give me a perspective which is to be celebrated and embraced (spasms, speeding, fights with steps and all) rather than shied away from and chiselled down to size.

I am wordy and I am wheely, and both are equally valid - one does not have to hide the other - and they might actually make each other more interesting!

That's pretty much the point of this blog. So, if you fancy reading the occasional ramble, do stop by. I'd love to have you!