Saturday 31 May 2014

Post the Twenty-Ninth - sleep loose

The usual response to someone wishing you 'good night' is 'sleep tight' - a phrase which has several specious origin stories, most involving Elizabethan mattress straps, but is actually just an archaic way of telling someone to sleep soundly. Presumably it has something to do with keeping eyes tight shut.

Anyway, whatever its meaning, Mama and I don't use it - we prefer 'sleep loose'. That's because I need all my muscles to be relaxed in order to get to sleep. Usually, now that I'm in a generally comfortable place, that's pretty easy. However, since I've been doing things like walking in the hoist (which is my equivalent of going to the gym), it's been a little more difficult because I'm achy.

So I am now putting even more store than before behind my relaxation strategies - ranging from meditation to wheatbags, and trying to remember that this is positive and productive pain, unlike most that I've experienced in the past.

I never used to believe the idea of 'no pain, no gain' - but it seems it's decide to prove me wrong. I'm determined to make sure it's worth it.  

Friday 30 May 2014

Post the Twenty-Eighth - sitting in the shower, part three

More shower stories ahoy, but please bear with me! It's some time ago now that I last devoted a whole post to the subject, and there has been more progress, so I wanted to share. When I last wrote about how I felt safe and comfortable enough to have a shower at hydro, there were three people involved: one to do the washing bit and two to support me. Today I was brave enough to have a shower with only Mama to help - and I sat up and supported myself (without feeling unstable) for the majority of the process. Too too happy!

I've had quite a busy (and lovely) day today, with hydro and a visit from a friend I've not seen in nearly four years, so that's all for now, but I thought you might like to read about the latest happening - even if it involved another shower!

Thursday 29 May 2014

Post the Twenty-Seventh - barefoot sitting

Today we're back to slightly smaller milestones. The 'slightly' is crucial, though, because (as I've endeavoured to illustrate previously) appearances can be deceiving.

I wrote, a couple of posts back, about how I have been able to stand (and jump) with no shoes. The cause of my excitement around this will be obvious, due to the intrinsic connection between our feet and standing. The link between our feet and sitting may not be as easily identifiable, so my joy at being able to sit barefoot might seem odd. I'd like to explain why it isn't.

For the last little while, I have only been able to sit up properly on my own when wearing shoes. The reason for this is fairly simple. As a result of weakness in my abdominal muscles, my sole method (pardon the forthcoming pun) of maintaining a good sitting position was to push through my feet to get myself upright. In order for this to be possible, I needed a strong sense of contact with my footplates, which I could only get through the help of the tread on my shoes. (This was also the logic behind the extra support for my right foot, which has morphed from Shakespeare's Complete Works, through a French-English dictionary, to foam - of which I now only need two very thin pieces. The sciatica at its worst pulled my foot away from its rest, and we needed to compensate.)

Well, over the past week or so, I have discovered that I can not only get upright independently without shoes on, but without footplates there too. This means one thing - my abs are coming back to life! I can't sustain it for that long yet but, as I said of my bent-legged sojourn in the hoist yesterday, it's a start.

Now to work on that six-pack...!

Wednesday 28 May 2014

Post the Twenty-Sixth - like stepping into old shoes

A relatively early post today, as I'll be at uni tonight, but also because I'm still buzzing from what I have to share with you. I just had a personal training session with Suzy (mid-week because Monday was a bank holiday) and I am very excited to give you this news.

I got back into the hoist, for the first time since before graduation, and I walked. I thought it might be difficult after such a long interval, but I was so comfortable, and it felt just like it did before. 

I'm still rather overwhelmed by the experience of doing it again, and I have few words, so here (below) are some pictures instead. Obviously my legs are pretty bent, because they've not done this in a while, but it's a start. We're very definitely back on the road - and that feels amazing!

 
Sitting and grinning beforehand





Back on my feet at last!

Tuesday 27 May 2014

Post the Twenty-Fifth - shifting

This is a short one, because I've had a busy day full of hydro, play writing and visiting with friends. However, I have good news.

You may or may not recall that I wrote yesterday about how I'm almost at the point where I can begin shifting my weight again. Well, I may not yet be able to shift my weight on my feet, but as of today I can do it in sitting (without using my hands to help). At hydro this morning, whilst getting out of the pool after a great session, I wasn't in quite the right position in the waterproof sling. So Julia (the instructor) told me to move my bum over - and I just did it without a thought!

Usually I need help, so it seems like things are really shifting! (A terrible pun for which I nevertheless refuse to apologise. I'm too pleased for sense to prevail this evening.

Monday 26 May 2014

Post the Twenty-Fourth - Jessi jumps

Many of you will know that my internet alias is usually something resembling messijessijumps. What you may not know is the logic behind that name. The 'messi' (sometimes in its dictionary form, 'messy') comes from my desire to find a word which rhymed with my name but wasn't 'stressy' or 'dressy'. Although I am often the first, I prefer to focus on the times when I'm not - and, as for the second, I'm very much a jeans and hoody sort of person. So, despite the fact that I'm pernickety about neatness, 'messy' seemed a good compromise, because it isn't entirely untrue. It refers to my bedhead - which, for a girl who doesn't move around much at night, is pretty damn impressive. At family reunions in Canada, us cousins used to have a competition every morning. I always won! The 'jumps' has nothing to do with jumping. It is a combined allusion to a nickname my parents gave me (Jessi Jumpsuit) and my initials, JMP, for Jessica Margaret Parrott. Papa always said they should've added Ursula, because then I would actually be JUMP. I'm very glad they didn't.

Why am I telling you this? Well, the jump may not refer to jumping, but it appears to have been a good omen. This morning when I was getting out of the shower (I know, more showers. Sorry!) I pushed myself off of my shower chair and (with Mama's help of course) jumped the several paces back to my wheelchair. That's two bare feet flat on the floor, both leaving and returning to the ground at the same time. Not hopping, with one foot flailing somewhere in the air, but jumping. Voluntarily. With bare feet. No shoes.

If I'm able to get both feet on the floor with shoes off as well as on, that's huge, because it means that they're not so sensitive that they pull away from any contact. And, if they're comfortable with the ground, they're almost ready for me to start shifting my weight again. So I can learn to step again as well to stand.

I think I'll just leave that there...! 

Sunday 25 May 2014

Post the Twenty-Third - on distance

I've mentioned before that I'm writing a play for my dissertation. I've also said that it's a fairy tale, set in the eighteenth century, which focuses on a princess who uses a wheelchair. Or, more accurately, a Bath chair - because that's what the wicker contraptions of the period were called, being named after what was one of the most popular spa destinations at the time. Today I want to write about it in a bit more detail, and to discuss the concept of distance.

Despite that fact that I have acknowledged that there are some parallels between my own situation and that of my protagonist (which have been increased by the issues with my chair), I have also been very clear that it is not at all autobiographical. (I mean, it's a fairy tale set nearly three hundred years ago, and I've never been a princess, or had the desire to be one. So it isn't some sly form of wish fulfilment, by any means - I have little patience for author inserts.) That said, it is impossible to write something which is not even slightly informed by our own experience, and I have found myself touching a few nerves recently. This brings me to the idea of 'distance', and the importance of maintaining a healthy balance between a passionate investment in a project and becoming overly emotionally-involved in the things happening to the characters.

Many of the things my heroine deals with are a very deliberate assessment of the way society regards individuals with disabilities. Indeed, the very presence of a wheelchair user is designed to provoke the audience into questioning not only their perceptions of royalty and beauty but also why it doesn't happen more often, even just in fiction. Although the script situates the story in a bygone era, I am trying to utilise that comfortable place to interrogate the contemporary world, which means it is not so distant and safe as it might first appear.

It turns out the consequences of this strategy are being felt as much by me (whilst I write) as I would hope they would be by my eventual audience. The anxieties expressed by my main female character, whether about love, loss or seemingly more mundane things like who will get her up in the morning, are ones I share - and I haven't yet mastered the art of writing this particular piece without getting the page wet.

Ah well, at least I can truthfully state in my commentary that tears went into it, if not quite sweat and blood...yet.

Saturday 24 May 2014

Post the Twenty-Second - Waterloo sunset's fine

I have noted over the last week that one of the things getting me through this time with a broken chair is the theatre, because Mama has so very kindly pushed me around and taken me to shows. I wrote briefly about Birdland at the Royal Court, and today my subject is a play that deals with many of the same themes, albeit in an entirely different manner.

On Thursday night we were rather closer to home than Chelsea (at Hampstead Theatre)  to see my friend Tam in Sunny Afternoon, a new musical based on the story and songs of The Kinks. My Papa told me that for him, they were the first long-haired rockers, and influenced his teenage years more than The Beatles or The Rolling Stones. I've been listening to Lola and You Really Got Me for as long as I can remember, so I was excited. I hoped for something that would get me bopping and refuel my ambition not only to  walk to get my second degree but to get up and out of my chair more permanently. (Particularly because Hampstead seems to have that 'strange effect' on me, since it was there that I first saw the stage version of Chariots of Fire - and met Tam, his dad and the rest of the cast - nearly two years ago now.)

I wasn't disappointed. The show was great - brilliantly acted, sung and performed by a superbly talented cast. We were taken from the band's early days, through highs and lows, hardship and hard graft, right to their eventual (and triumphant) conquering of America at Madison Sq. Gardens. I was swept away on the rhythm of All the Day and All of the Night, which gave me the moment of escape I needed, but I was also struck by how so many of the songs dealt with the complexity of human life in a frank way, unafraid to face up to difficulty and then refuse to be cowed. This helped me to regard my chair issues with a renewed hope and determination, and has given me a soundtrack to carry me through until it's fixed. Just like the band, when faced with bureaucracy, I 'won't take this all lying down' - though I'll try and break the rhyme scheme by smiling. Of course, there will be hard days, like yesterday when they brought the wrong motor and couldn't fit it. As I write this, though, looking out the window at the blue sky over Hampstead Heath in the way I have so many times before, I know that I'm happy and okay. After all, to paraphrase the song from which I took the title of this post, 'I don't feel afraid - as long as I gaze on [the London sunshine], I am in paradise'. (That song has some of the best harmonies in the history of pop music, in my humble opinion. Coincidentally, Waterloo underground is one of the few it's possible to use in a wheelchair, because it's on the Jubilee Line.)

So I wanted to say thank you. Thank you to The Kinks for their music, thanks to Hampstead for another great show, and thanks to the cast and crew for being brilliant and for the lovely chat afterwards. Thanks, Tam, for being my friend - and for the push back to the car! You've once again made a difference to my life. You'll just be finishing your last matinée as I post this, so I hope that went well and the final evening show does too.

Break legs (and amps and drumsticks, of course!) 

Friday 23 May 2014

Post the Twenty-First - chair update two

I was hoping that this would be very short again. Actually, I wanted it to consist of just one sentence: 'My chair is fixed!' Sadly, that's not the case, despite the fact that the engineer came this morning. They ordered the wrong motor. I'm a bit gutted, really. We have to wait for parts all over again...with no idea how long they'll take this time, either.

However sad this makes me, though, I'm determined not to let it get me down. I've always believed that things happen for a reason, and maybe the universe is so excited by the progress I'm making on getting out of my chair that it wants to give me a little longer to experiment without the distraction of all the other things I could do if I had electricity. Or perhaps it's a method for extending my immersion in the eighteenth-century world of my play. We'll just have to be patient to find out. Who knows, at this rate, I might even be walking by the time it's fixed! Whatever it is, I've coped for long enough now that another few days [weeks, months?] can't be too much harder, and I've got lots of strategies to get me through. Thank goodness for my dissertation (escaping into work is what I do best), theatre and the music of The Kinks (more on that tomorrow!).

Anyway, I thought you'd all like the news, particularly because I had said I hoped it would be sorted by today. As I often wrote to sign off Walking by 2013, we just have to keep plodding - and I hugely appreciate you all being with me!

Thursday 22 May 2014

Post the Twentieth - on the importance of voting

It seems apt that this topic is the one which falls on my twentieth post, because it deserves to be marked as a milestone. Today is the day of local and European elections here in Britain, so it is especially topical for readers from the UK, but I would hope that those of you living elsewhere will find it just as relevant. (After all, SA just had presidential elections,  and there is always somewhere in the world dealing with the issue of suffrage.)

I should note, before I begin, that this is not intended to be a post telling people how they should vote. I have always made the leftie nature of my own views pretty plain, and I might tentatively ask that UKIP be avoided because the prospect of them getting in terrifies me, but I would not wish to force my politics onto anyone else.

What I do want to stress, though, is that it is crucial to vote (however you may choose to do so). We are extremely privileged in this country because we have the opportunity to voice our opinions in a safe and democratic manner, without fear of retribution from the authorities - and, although people seem to forget this fact, this is something which is still comparatively rare. It's also relatively new, even in our country - a point of which, as a young woman with a disability, I am very much aware. These groups, just two among many, have long been termed disenfranchised - for a reason.

Women in Britain have had the vote for less than a century. 1918 brought with it the first revision of The Representation of the People Act - but this only gave suffrage to women over thirty who were in possession of property. It was not until 1928 that this right was extended to all women over the age of 21. Having just turned 22 myself, I am extremely conscious that I would only have enjoyed one year of my majority by now. Except, of course, I wouldn't - because the other condition of being granted the right to vote was that you were deemed to have the mental capacity to do so, and, until very very recently, people like me were frequently shut away in institutions. We weren't deemed fit to be seen in the world, let alone to be allowed to vote!

Now, this is not an angry post, although revelations like that might fire a few flames. Rather it is a celebratory one. I have often said that I would like to have lived in the eighteenth century - except for the lack of good sanitation and the right to vote. This post constitutes an expression of my gratitude that I am actually living right now - and how lucky I feel - as well as an explanation of why I will most definitely be voting, today, and in all future elections I have the privilege to witness. Hopefully it'll convince you to, too! 

Wednesday 21 May 2014

Post the Nineteenth - on the wonder of words

Another short one today, as I'm trying to work what I've written for my play over the past few weeks into something resembling a coherent skeleton structure. I use 'skeleton' here, in full cognisance of its many meanings in my life, because it is a prime example of the subject of this post. Whilst I have been weaving together the first fragile threads of my dissertation project, I have been struck once again by the complexity of the tools I am using - namely, words - and reminded how truly wonderful they are. 

They can offer succour and solace when we are sad, or coax a chuckle and a laugh from our lips. We can use them to throw caution to the wind, or bury ourselves beneath them like a blanket for comfort. We can travel on their tips to places we have never been, but we may also allow others an inkling of the world that only we know. Such paradoxes make them puzzling, but pretty powerful, too.

(I realise that, for a post about words, this is strikingly inarticulate and obtuse. I apologise - the irony is not lost, and I shall expand upon it at some point.) 

Tuesday 20 May 2014

Post the Eighteenth - chair update

This is a short post, written in a break from dissertation research and writing, but I didn't want to skip a day. So thankfully I can update you on my chair situation. This morning we got a call to say that the parts are in (at last!) and that a technician will come to the house to fit them at around 8am on Friday. This was a bit of a surprise, because we'd been told that the chair would need to be taken to the workshop, but if they're able to do it here then that's absolutely fantastic!

If all goes well, I'll have a working chair in time for the weekend! Huzzah! Hold thumbs and cross fingers and toes for me, please? I'll let you know, of course!

Monday 19 May 2014

Post the Seventeenth - the Parrott getting back on her perch

Today's topic is something I don't believe I've ever discussed in a post, even during Walking by 2013 - the way I get in and out of my chair. I do something called a 'standing transfer', which is pretty self-explanatory, really. I push myself forward to the front of my chair, from where I stand up, holding onto someone for support. When I get back in, we do the same, but in reverse.

Well, actually, there's an extra bit - except that's the part I haven't been able to do since I developed sciatica in August. Once I had pushed myself forward, I would perch on the edge of my chair for a while, before standing up. After the sciatica arrived, I had to stop, because the edge of my chair poked right into the offending nerve.

If you think that this is a lament for a loss, though, you'd be very wrong - but hopefully the title will tell you that! Far from it - because, over the past few days, I've been perching once more. Following the reassuring news we received at my appointment on Thursday, it would seem that those last little twinges of sciatica which were not quelled by the Botox have finally gone.

So I can live up to my name again and perch to my heart's content - though I'm not quite stable enough for Mama to walk away yet, so you'll have to wait a bit for pictures!  

Sunday 18 May 2014

Post the Sixteenth - for my dear Mama

Mothers' Day was last Sunday in South Africa, and a couple of months back here in the UK, and I marked both of those occasions by telling my Mama how much she means to me. I did so in private, though, the same way I conduct most of the rest of my personal life. That said, sometimes it's important to demonstrate feelings through more than a hug and a nice time spent together, or even a gift - and today I wanted to do that via the medium of this blog.

Last night we had tickets for Simon Stephens' new play, Birdland, at the Royal Court. Now, these had been booked ages ago (before my chair broke), and I fully expected that we wouldn't be going. Not only did we go, but Mama pushed me around Chelsea, over cobbles and up curbs that were too large to really deserve the name 'dropped', in order for us to get to the theatre. The play was brilliant (and I saw a fellow theatrical friend, James, even though it was too difficult to get over there to say hello. If you read this, sorry!). I felt truly lucky to be there.

So I wanted to use today's post to thank you, Mama. For being a chauffeuse extraordinaire and a wheelchair technician. For being my drill sergeant and insisting I do the physio which will keep me in shape. For being a scribe and making sure I get through this second degree, so I have a graduation ceremony in which to walk once again. For being my stylist and getting me suitably dressed to greet each new and exciting day. For the bedtimes, the get ups, the showers and the toilet transfers. For the laughs and hilarity, as well as the shoulder to cry on when things get tough. For supporting me along the path of my chosen career, even though the road to theatre is filled with all the more (both figurative and literal) ruts if one is trying to tread the boards sitting down.

Most of all, thank you for the love and advice, and for instilling in me that the observation made by one of my first paediatricians (that I can always be counted on to buck trends) is actually a pretty cool way to live life.

It's really appreciated.

I love you.     

Saturday 17 May 2014

Post the Fifteenth - the two JPs

Today's post is about friendship. (I know, for once, a short opening sentence from me! What's happened!?) Well, actually, I'll be focusing on one friend in particular - and the significant impact she has had on my life.

I first met Jade Passfield in around March 2010, at the Warwick Music Centre Ball. She was involved in Chamber Choir, which had quite a bit of crossover with Opera Warwick, so we were introduced fairly quickly. This meant we had plenty of time to chatter away and discover that we also shared many interests outside classical music...and even the same initials! I had been quite nervous about attending the ball, because I didn't know many people aside from my own table, so for me Jade (with her familiar London accent and infectious giggle) was a huge blessing. I seem to recall, by the end of the evening, her being so tipsy that she was sitting on my lap as I drove around the hall, with her glass of wine balanced precariously on my armrest. That sealed the deal. It was as if we had been friends all our lives - a bond which only grew, through jaunts to Curiositea, the student union's adorable vintage tea shop, film nights and celebratory sunbathing outside her accommodation at the end of first year exams.

Our friendship had two principal characteristics - a rye, highly sarcastic sense of humour and a strange, almost twin-like, understanding of what the other was thinking. Nowhere were both of these more obvious than in an incident during one of our rare decisions to  defect from Curiositea to the non-student union-owned Costa (it probably served us right!). My chair decided to have a temperamental moment in the queue. Jade was telling me (and it) off, and I was laughing so hard at the awkwardness of the situation that I couldn't speak to place our order. The beleaguered barista was so concerned by this spectacle of the 'poor little disabled girl' unable to move that he gave us both free drinks, with a significant nod at Jade. He clearly thought she was my carer - which made us laugh even harder.

That's why I love Jade - she takes the piss, and takes me to task, just like she would with anyone else. Yet there is also (as there would be with anyone else) an underlying intuition of when I need help, along with a healthy dose of common sense and compassion. It was visible in her suggestion, when we finally had a shared module in second year, that she take notes for both of us to save the bother of organising someone else - but it was most explicitly evident in her unfailing support of me during last year's quest to walk to collect my degree. Support which culminated in her instigating a completely overwhelming standing ovation on the day.

This leads me to my reason for writing about her today. You may remember, a few posts back, that I voiced my desire to raise some more funds for Starlight alongside my concern that it wouldn't be interesting enough the second time around. Jade read it and, in her typically selfless way, said that she had decided to undertake the Great West Run in October because 'she wants to understand just a little of what my body goes through every day', alongside my efforts to get out of my chair.

So, I have an announcement to make. We are embarking on a team fundraising effort - two best friends hoping to make the same difference to other people's lives that we've made in each other's! We've only set a basic target, because we don't want it to be an obligation, but any support will be hugely appreciated.

You can find our team page at https://www.justgiving.com/teams/ParrottandPassfield


Our individual ones are:

http://www.justgiving.com/walkingby2015 (to which I have also linked the 'Sponsor Me' button you will see on the right of this blog)

http://www.justgiving.com/jade-passfield

Thank you for continuing to read my rambles!


  

Friday 16 May 2014

Post the Fourteenth - guerrilla toothbrushing

Having talked about a massive milestone yesterday, today we are back to the smaller stuff. That is, smaller, but no less significant. I wrote, five posts ago, about how I am back to brushing my hair. Well, not only am I still doing that, but I have also recouped another skill for my roster - brushing my teeth!

I have called it 'guerrilla' for two reasons. When I first said to Mama last night that I wanted to give it a try, I joked that I planned to save my body, if not quite the world, one bristle and one smile at a time. We giggled. Having done it again this morning, though, I understand that there was truth hidden in the jest (as there is so often). Most things do not succeed as a result of grandiose gestures. Rather they are achieved through those subtle efforts which would usually go unnoticed but, when combined, create a crucial bedrock for change. 'Duck tape won the war' is far from an empty phrase!

So, with that in mind, I thought you might like some photographic evidence of one more of my own 'subtle efforts' - because a toothbrush has more uses than just brushing teeth. It is a weight to lift, in preparation for something heavier, like a bar of soap. It is an endurance test, which helps me to gauge whether I can sustain sitting up without resting my arm on my, well, armrest. Most of all, though, it is proof that perseverance pays off.

Perhaps it's like riding a bicycle, in that you never forget?


Teef, innit!

Thursday 15 May 2014

Post the Thirteenth - she's got steel in her spine

I have some exciting news! Before I elaborate, though, I suppose I'd better give you some background - I'll try and keep it brief.

Here goes.

Those of you who know me in real life, even if it has only been for a fairly short time, are probably aware of my skew spine. What you may not be aware of is the fact that it was perfectly straight until I got to the age of fourteen, when I developed spasms in my groin so intense that they pulled my left hip out of place, causing me to sit at a slant to compensate. You probably also won't know that I've seen several different orthopaedic consultants since then. All of them have tried to persuade me to have an operation called a spinal fusion, where a titanium rod is placed in your back to hold it in the correct position, and to which I have always said 'thanks, but no thanks' - for several reasons. I won't go into the details here, because some of them are pretty personal and don't only involve me, so suffice to say that I wasn't a fan. 

Of course, I was sensible enough (even at seventeen, which is when I last changed consultant, after moving home from boarding school) to know that it's important to keep discussions open, and I agreed to mull things over. In fact, it was during this period of musing that I heard the phrase that provided me with the title of today's post. I was visiting Oxford with Mama, to get a feel of the place before I made a decision about my choices for my UCAS form (the UK university application system), and we spent the night at Mansfield College. We went to the open day, found out all sorts of interesting information, and I knew I wanted to apply to Oxford (which I did, although I ended up choosing Wadham). Before we got loaded into the car to get home, Mama dropped our room keys off at the Porter's Lodge, and he said, 'She'll go far, she's got steel in her spine.' His choice of metaphor couldn't have been more coincidental, and it made me laugh and cry all at once, because I had decided to leave the surgery for the time being. I wanted to see what happened if I went on my own for a bit - and his words unwittingly gave me the strength to believe I could do so.

Anyway, the reason I'm rambling on about this is that today I saw my consultant for the first time since then. (I've had regular check ups and x-rays in between, but I've only seen his registrar.) I had yet another x-ray (I must have so much radiation in my body by now, I'm surprised I'm not glowing!) and then went in to discuss the results. Well, I'm very pleased to tell you that my spine hasn't changed since my last check in 2012, which means that over the course of two years, although it hasn't got better, it hasn't got worse. (That's a long time when it comes to bones.) It's also still super flexible, so there's scope for improvement outside the bounds of surgery. Huzzah!

I'm a very happy bunny with a very happy body!

Wednesday 14 May 2014

Post the Twelfth - 'Keep Fit While You Sit'

Having written yesterday's post about the benefits of Personal Training, I didn't expect to be discussing exercise again so soon. However, in comparing all of the different things I do (hydro, land-based work etc.) and the varying degrees of independence with which I do them, what struck me is how little exercise-related activity I actually do completely on my own. Sure, when I'm at home I take fifteen minutes out of every hour to do some breathing and abdominal work, but it's not the sort of thing which leaves me feeling as though I've just been to the gym - whereas with hydro or PT I'm (nicely) exhausted.

I wanted to change that. Obviously, it would have to be something I could do in a seated position, and I wasn't really sure how much I'd find. Nevertheless, as I should have expected, the internet came up trumps. After a search using the keywords in the title of this post - 'keep fit while you sit' - I discovered a youtube video of a programme from the mid-eighties called exactly that, which contains a thirty-five minute aerobic workout tailored to people in wheelchairs. It is demonstrated by three wheelchair users themselves (two of whom were in rehab after polio, and one with cerebral palsy, like me) alongside a physio and an aerobics instructor. I'll post it below for your viewing pleasure and information:



 
 
Now, it's not perfect. It's more than a little out-dated in its use of language, and could probably be done much better today. What I like about it, though, is that it isn't overly patronising. The potential viewers are treated as a valued audience, and aside from the necessary red-tape of the caveat that a physician be consulted before you begin the programme (as well as the fact that the participants are sitting down), it has all the features of a typical eighties workout show which is great fun to watch and to try. (I mean, what's not to love about a cheesy motivational soundtrack and huge hair? Exactly.)

So, over the next little while, I'm going to block off some time each day to watch that video and try the workout, to explore whether it makes a difference. I'll let you know how I get on - and maybe some of you will be inspired to have a play, too!

Tuesday 13 May 2014

Post the Eleventh - blue sky thinking

Sorry I didn't write yesterday, but my Mama flew in from South Africa, so I was spending some quality time with her - and an ecstatic Darcy. Then she phoned to see if there was an update on the chair situation. They told her that they didn't know about the parts for my electric, but that someone would be coming to deliver a manual. When it got here, it didn't have all the bits it was meant to, but thankfully I don't have to use it until the time comes for my electric to go into the workshop, and they need the parts for that to arrive before they can take it away. So we've got a bit of leeway to sort the manual, and I'm no better or worse off than I was yesterday.

This is what I keep reminding myself. Yes, I can't get around at the moment, but I'm sitting up and out of bed. Yes, I struggle to move on my own when I'm working against gravity, but in the water I can keep myself afloat, move my arms, and just about kick my legs - and I'm working on getting back to swimming independently like I could when I was fourteen. Yes, I may not be able to frolic in the sun on the Heath as I would like to, but I can gaze out of the window at the blue sky and use its beauty as fuel for my mind and muscles. Hence the title of this post - you know how much I love puns!

One of the fundamental tenets of my life philosophy has always been making the best out of what I've got - because only then can it get even better - and hopefully the list above attests to that. (I know, I know, the schmaltzy Jessi optimism strikes again, but, if you've stuck around for this long, you surely must be used to it by now!?) So it should come as no surprise to you that I enjoy exercising, because it is important to keep my body in the best shape possible. This is why I've always loved physio - it keeps me comfortable. The thing with physio, though (whether in the pool or on land), is that it mostly consists of what is called 'passive stretching' - where someone else takes a particular body part and moves it about for me. Now, this is great - it means that muscles get stretched which wouldn't get a look in if I was left to muddle along on my own, because there are things which I am quite simply unable to do.

That said, I know that the most crucial aspect of effective muscles is their strength - after all, my main issue is that some of mine are too strong and others too weak. I'm also aware that the only real way to build up the strength of the weaker ones is for me to actively work them myself. Of course, I can do that whilst standing and walking in the hoist (of which I should have video footage in the next few days), but, as I spend the greater part of my day sitting, I also need to have things I can practise in my chair...

...which is where my wonderful friend Suzy comes in. We met thanks to a mutual friend (yay Savannah!) and she started off by helping me out at RADA. Over the course of the first few classes, it somehow came up that Suz has a Personal Training business to supplement her acting work. Well, do you think I was going to let that coincidence slip by? No way. Since then we have had a weekly session where I'm put through my paces, either sitting up or lying down. She also comes to hydro so that we can explore the contrast between land and water.

Suz doesn't have any other clients with disabilities, so this world was completely new to her - but I quite liked that idea, because it meant that she had no preconceptions whatsoever. She also doesn't make allowances - which is incredibly refreshing. After all, each of the people she trains have their own completely individualised programmes. She works me hard - but it's paying off. My legs are stretching, my abdominals are getting stronger, and it means I have something productive to do whilst my chair is on the blink. I couldn't be more grateful, especially now I can do these sorts of things again:

Without sounding too foward...look at the space between my legs!

Pushing my leg out whilst Suzy stretches hamstrings

Strengthening my abdominals by sitting up to create resistance for Suzy's stretch

Thanks, Suz!

Sunday 11 May 2014

Post the Tenth - in praise of 'The Lizzie Bennet Diaries', vol. ii

A little over a year ago, I wrote this post about The Lizzie Bennet Diaries, a web adaptation of Pride and Prejudice which had had a pretty big impact on my life, pulling me through the most difficult aspects of my final year and spurring me on to achieve my goal of walking to collect my first degree (which I then succeeded in doing, conquering a few of my own unforgiving hills. Huzzah!) I wanted, in some small way, to express my gratitude to the cast and crew - and hopefully that came across. 

Having done my best to articulate the myriad emotions I associate with both Austen and adaptations of her work in the original post, along with how fabulous The LBD especially manages to be, it may well seem odd that I would write on it again - after all, anything else would amount to little more than indecipherable gushing. Nevertheless, more than a year after it finished (two years since it started!), I am still noticing the positive effects - and it feels important to acknowledge that within the context of my new goal and exploration. Part of my reasoning for writing this particular post at this particular moment is because my copy of the DVD box set arrived just two weeks ago - and it honestly couldn't have come at a better time.

I have written a lot during these early stages of this new venture about how my power chair breaking down (which happened nearly a month ago now!) was the catalyst for my decision to start blogging again and to investigate the possibility of finding alternative ways of moving independently in my daily life, whilst also working towards walking to collect another degree - my Master's. What I haven't mentioned so much, in a bid to keep things largely positive and optimistic (because that constitutes my primary coping mechanism), is the amount of time I have spent feeling trapped over the last month. The thing is, although I am exploring different methods of motion, I am still far away from the point where any of these experiments have proved reliable enough for me to try on my own. So, to all intents and purposes, I am still stranded and immobile unless there is someone willing and able to push me around - and Life on Manual has been taking its toll.

That said, though, I refuse to be defeated - and this is why The LBD DVDs arrived at the perfect interval. When one (literally) can't move around the house, to have a series which is brilliantly written and acted, relevant to the sections of my dissertation that focus on the mechanics of storytelling (yay costume theatre!), and which amounts to over nine hours of footage, available on the TV at the touch of a button...is amazing, and the best cure for cabin fever and itchy feet I have come across thus far. Not only can I revel in the combined awesomeness of my favourite author (joint top spot with Tolstoy) and the hugely talented group of people who have done such justice to her words, but I can relive watching it for the first time, last year, and, through recalling of all the physical achievements I made in the  period that the story unfolded, be reminded that I can and will get there again - broken chair or no chair at all.

I wanted to take the opportunity to re-emphasise my thanks, even though all the words in the world could never adequately encapsulate how much the show still means to me. So I guess I'll end, not with my paltry prose, but with one of the best-loved quotations from this modern-day Lizzie - 'my gratitude is there, and always will be.'

Saturday 10 May 2014

Post the Ninth - hair today

This morning I had another shower! (I would promise that this is the last time you'll see that word written on this blog but, if I did, I'd be lying - there'll be at least one more post in which they feature.)

Anyway, what I have to share today is linked to having a shower, because it happened afterwards - and, although it could easily have occurred otherwise, the combination of a broken chair and wet hair (ooh, they rhyme!) was the impetus for it.

Basically, because I have to be pushed around at the moment, Caroline had put my hairbrush on my lap for me to carry while she manoeuvred us down the corridor and thro kitchen. Feeling brave, I picked it up, and started running the bristles through my hair.

Tiny, insignificant detail, I hear you shout. Sure, particularly because I used to do it all the time, but now my arms are usually otherwise engaged, keeping me upright. So today marks the first time in a good long while that I have been able to brush my own hair, which shows that it is possible to regain skills once thought lost, and I thought that deserved a post.

I even have a picture, since I was fully clothed!


 
Things getting hairy...

Friday 9 May 2014

Post the Eighth - hydro happiness (and more showers)

You will have noticed that there has been a rather longer gap between this post and the last than previously. This isn't because I haven't had things to write about. On the contrary, there's been so much happening that I've been scrambling to keep up with it. Due to the fact that Mama is still away, I haven't been brave enough to attempt anything too adventurous - at least, nothing which would seem that adventurous to anyone but me - so I've simply been puttering along as usual.

With my chair issues remaining unresolved, I've not been able to leave the house except on the days that Papa has brought the car back up from Surrey to take me to uni or, more frequently, to my favourite form of exercise - hydrotherapy. I've been twice since Mama left (in fact I was meant to go today, too, but it was cancelled; that's why I had time to write, after I finished the beginning of my dissertation).

The first time was also my first session since Botox, because of various problems with the pool, and it was great. We managed lots of stretches that haven't been possible since my sciatica. Tonight, though, my focus is the second session. You may remember from a couple of posts ago that my body had been struggling with the practicalities of having a shower. Well, after a brilliant time in the water on Tuesday I succeeded, not only in having a shower but in having one whilst sitting on a singularly uncomfortable and unstable seat. This was the same seat on which I have hitherto been unable to sit for more than a few seconds, let alone for the fifteen or so minutes it takes to have a shower. It didn't hurt at all - and I couldn't stop grinning!

That grin lasted until yesterday, when it only intensified. I felt safe and comfortable enough to shower again, this time at home, so I'm staying clean! As a spoonie (a term I'll explain in a forthcoming post) I can't emphasise enough how much this means. For now, I'll put it this way - I haven't used dry shampoo in a whole week.

A whole week!

April showers have flooded over into May, just as I hoped they would. Huzzah!

See you tomorrow.

Sunday 4 May 2014

Post the Seventh - clarification

Hello again friends!

(See how much more regularly these updates are appearing?)

Actually, that (rhetorical) question sort of sums up the subject of today's post, because it delineates what is perhaps the most (seemingly) obvious difference between Walking by 2015 and Walking by 2013, which I have mentioned at various points over the last few days. Namely the fact that, this time around, I have thus far focused more on the apparently innocuous and insignificant happenings than on the 'bigger' events - and that I am consequently updating more frequently. It is this which led me to realise the need for the titular word, 'clarification', because (having reread my last few missives) I can see that my language has been a tad obtuse and wishy-washy...

Before I endeavour to clarify some things, though, I want to thank you for all your comments and suggestions. They're hugely appreciated and gratefully received - and they've given me lots of food for thought, most of which has led me to try and write this, and to do so in a vaguely coherent manner. So thanks.

Now, then, I'd like to go back to the point I raised at the beginning - concerning the frequency of posts. I think I have put too much emphasis on the idea that this new blog is to be smaller in scope than the last one, and thereby oversimplified my hope for this space. On reflection, the divide between the macrocosm of my first challenge and the microcosm of this project (which I have been so desperate to uphold until now) is entirely false.

Let me try and explain. I still have a specific and, more importantly, desired end - I want to walk to collect my Master's degree next April. Moreover, in the future (read: as soon as my dear Mama returns from her trip), I will be deliberately and conscientiously working towards that goal, about which I shall most definitely write - as I did with Walking by 2013. Indeed, I will have lots to write, because (however outlandish a fantasy it may appear to be) I am hoping to capitalise on the freedom given by the Botox and the success I am having with hydrotherapy in order to explore the possibility of doing it (even briefly) on my own. There you go.

This time, though, I am also (as I have already begun) writing about the seemingly insignificant or innocuous happenings in my life. Not because the big leaps aren't just that - huge - but because, through a combination of the new discoveries I have made on my course and outside it, I am now at a point where I am comfortable enough with myself and my situation in life that I feel brave enough to write about the small, or even difficult, bits as well. Whereas, during Walking by 2013, I often felt I should skip posting on a bad day because it was better that you only heard about the good stuff, I now understand that these aspects are nothing to be ashamed of in the slightest.

This is why you will see triumphant evidence of me walking in the the hoist alongside pictures like the one below, which shows me having my hair washed in a wok because my body just wasn't up to showering. After all, every journey comes with peaks and troughs, and I'd be lying to myself if I didn't acknowledge that - and I do. It's just that I prefer to greet hard times with a smile. So you will probably get more walking than wok photos, on balance, but I wanted to publicly assert that I have started this blog in the hope that it will provide a place for both.

I hope, too, that this has made clear my intentions, and removed any confusion. (Confusion which I shared.) Perhaps it will make yesterday's post easier to comprehend - who knows, it might even change some of your answers.

Thanks for reading, as always. It's lovely to know you're there.

Here's the wok photo =P:

Saturday 3 May 2014

Post the Sixth - compassion fatigue?

I have a question, dear readers. It is related to the connection of this blog and Walking by 2013, which is implicit in their names, but it also follows on from my discussion yesterday about the differences between them.

As I wrote, the former was more of a macrocosm, whereas the latter (i.e. this space) is more of a microcosm. More specifically (and less hyperbolically-worded) Walking by 2013 had a clearly-defined goal. I was training to walk to collect my degree - which made it a prime opportunity for fundraising. People contemplating the idea of donating find it easier to comprehend a named achievement than they do sporadic (or even, shall we say, spasmodic? Tee hee) spurts of enthusiam.

This is what has thus far prevented me from linking my new blog to a fundraising page, particularly coupled with the awareness that people (however close they might be to the person asking) can get very tired, very quickly, of repeated requests for donations. Hence the title of this post - for the phenomenon is often termed compassion fatigue, and this is the last thing I would want to inspire in my readers, whether you are friends, family or passersby who have happened upon me through chance. After all, I have done this before, and don't want to bore you.

However, having pondered the two blogs for a bit, I have come to two (possibly paradoxical) conclusions. Firstly - as I have noted, they aren't based on the same premise, so it isn't an exact replica. Secondly - they aren't all that different, because I'm still working towards something, even if the parameters of that task are not as precise as those of its predecessor.

And I'd really love to raise some more money for Starlight.

Yet I want it to be anything but a chore or an obligation. So I thought that, before I set up anything or contact anyone, I'd better ask your thoughts. Would you consider it a pressure that I ought not impose, an unnecessary repetition, or would you be willing to support me on another drive for money and awareness, free from any kind of expectation, for a cause that is so close to my heart?

Let me know your thoughts. Comments, ideas and suggestions are most welcome and much appreciated.

Love and thanks xxx

Friday 2 May 2014

Post the Fifth - April showers

As will be obvious from yesterday's update, I'm very aware that it is now May. That said, it's only just May, and what I'm writing about today occurred in the last week of April. I only held off posting about until now because I wanted to be sure that it was happening. It also provides me with a rather convenient pun.

You see, now that the Botox has settled in, I can sit up on my own for most of the duration of a shower - and that feels awesome. I know it probably seems pretty trivial in the grand scheme of human achievement, but for me it's huge. In the writing of Walking by 2013, as those of you who've read it may remember, I didn't focus too much on the so-called 'smaller' milestones - which is partly why there was often a very long gap between posts, because I didn't want to repeat the bigger things, for fear of boring you lovely readers. This time, though, the scope is a little different (much more of a microcosm) so I figure that these sorts of topics are acceptable.
Anyway, sitting up in the shower. Understandably, this isn't a 'pics or it didn't happen' situation, because that would involve taking photos of me naked and posting them on the internet...which will NOT happen. EVER. So I hope you'll trust that the sitting up did, because it was (and is) amazing.

Here's to it continuing through May.

Thursday 1 May 2014

Post the Fourth - May Day

[Warning: As I'm posting this via an app on my iPad, it's not that easy for me to sort the font size, so huge apologies if it - and the next few - are super small. This makes me feel really awful on an accessibility front, obviously, and I'll sort it as soon as I'm back on my computer.]

I love May Day. It's mostly because I'm more than a little bit of a folk geek (as well as a history one) - but it's also simpler than that. The festival is about celebrating new beginnings etc. (I say etc. because this could so easily turn soppy and, since my last post was too long by far, I thought I'd better try and keep this one short.)

So. It would seem that a new beginning of sorts is exactly what I need at the moment. Not for this blog (after all, this is only post four) and not for life per se. My life is pretty good, and I constantly think about how lucky I am to be doing what I'm doing and living how I'm living right now. (That's not to say I always feel great, and there'll be a post on the subject if I manage to psych myself up to it, but things are good right now.) It's just that my chair situation has rather got me down, and Mama is currently on a plane to South Africa, so I've been worrying about how I'm going to get around for the next twelve days. (It's okay, I have lovely friends over to help, but I'm a worry wart.)

BUT I started back at uni yesterday after the holiday, and there is slightly more structure, because I have something to focus on. Namely my dissertation - which is, broadly, a fairy tale with a protagonist who has a disability, set in (guess?) the eighteenth century. So I've decided, in what you will soon come to recognise as typical Jessi fashion, that I'm going to take this as a research opportunity. There were no powered wheelchairs then, of course, so why shouldn't I have to cope for a week or two without the assistance of electricity? I mean, I've always said that I was born in the wrong era (aside from women's suffrage and good sanitation, at least in this country) so I suppose now's my chance to make good on that assertion.

Cue a new beginning involving not being bothered by my chair.

Happy May Day!