Post the Fifty-Ninth - draft

Today was spent doing some more work on my dissertation, and then catching up with a dear friend I've not seen since the end of Warwick, so there's not been much time for anything major to occur physically. However, it got me thinking, and I'd like to share some of my ponderings now.

The writing process is a tricky beast, as it is extremely rare that anything gets onto the page fully formed, and this means that there are many drafts. I've come to the conclusion that it's the same with my body - there are many layers to add (as well as to remove) and a few revisions to make at each stage of the journey.

I used to think, when I was little, that I'd just jump out of my chair one day. Now I understand that the physical process is just as nuanced as my beloved writing, and that it's important for me to give as much care and attention to each individual part of my body as I would to each section of a novel or a play - whilst also retaining an idea of the bigger project and how they all fit together.

My body is a story, too, and it's up to me how I write it - however long it takes.

Post the Fifty-Eighth - like mother, like daughter

My Mama comes home tonight (as does dear Jojo), and I'm so full of squee and excitement that I can't focus on much else, so that's all you'll get for a post. 

I'll make it up tomorrow - although love doesn't really need to be made up for, does it?

Post the Fifty-Seventh - proud

I am proud to be a colour of the rainbow and I am proud of my rainbow friends and family.

I wish I could be slightly braver, and less obtuse, in making that statement (and perhaps I will be in the future) but for now, after a wonderful day of celebration and solidarity (even in the rain), hopefully it's enough of a start.

Post the Fifty-Sixth - on 'Call the Midwife' and contractions

The girls and I have been rewatching series three of Call the Midwife, a BBC drama about community midwifery in the 1950s, and (aside from being reminded how much I love the programme) I have been struck by its relevance to this blog and my journey. The reason may surprise you, although you've probably guessed something from the title.

I've mentioned before how I have had spasms in my groin since roughly 2006 and, although they were at their worst in 2008, they have continued - hence my regular Botox injections. What I've not talked about so much is the way I deal with them...which, due to the area affected, mostly involves breathing like the women in the show are told to do whilst in labour. 

When the spasms are in full force (which is far easier now than it once was, because they only last a few minutes instead of the whole day), my breath gets so out of control that all I can do is gasp. In order to get a handle on it again I have to focus intensely and pant, in the same way as expectant mothers do before they push. Then I am (eventually) able to go back into the diaphragmatic breathing I mentioned yesterday, which gives me the strength to work with my body and push - albeit pushing my own legs down to the floor instead of a baby's.

Over the years, all this practice dealing with contractions and the pain that comes with them has got me thinking that I'd be rather good at giving birth. Not that I have plans to do so any time soon, nor am I romanticising it. It's just that the idea that I might actually be as capable as any other woman makes me happy - because it's not something often talked about in relation to disability. I am therefore thankful to everyone involved in Call the Midwife for giving me a sliver of hope. 

They have done so in many ways, in fact, because one of the most recent episodes even centres on a couple with disabilities. That's a story for another forum, as I haven't enough space or time here to do justice to the brilliance of that particular script and I'd hate to be accused of spoiling, but I wanted to express my own idiosyncratic gratitude to the entire team for dealing with the plot in a nuanced and sensitive manner. After all, such issues are rarely broached in a contemporary setting, never mind against the backdrop of the post-war East End.

So thanks, dear CTM, for offering us actors with disabilities some (all too rare) representation - and for teaching me that, just maybe, my spasms aren't as terrifyingly abnormal as they often seem to be.

It's hugely appreciated. Bring on series four!  

Post the Fifty-Fifth - painsomnia and puppies

I've written a couple of times about how I've not been getting much sleep recently (read: for the last month or so) due to muscle pain in my side - and how, in the middle of the night, it helps to remember that there's a positive reason behind it. Well, since I last wrote on the subject, I have an even clearer idea of the cause, thanks to discussions with my osteopath and physio. It seems my intercostal muscles - several different groups of muscles which run in between and connect our ribs, and which are instrumental in maintaining good posture - are going into spasm. As a singer, I am well acquainted with their importance, and after all the work I have been doing it makes perfect sense that they'd be involved. It explains why I wake up gasping for air with the feeling of a stitch, too, because the intercostal muscles are fundamentally linked to the diaphragm - and the only thing that helps is rolling onto my back and taking deep breaths right down into my stomach. 

Along with the better understanding, I have a name for my lack of sleep (painsomnia) which has a pretty simple definition - difficulty sleeping as a result of chronic pain. I'm not sure it's an official word, but it's a phrase used by several people I know who subscribe to 'spoon theory' (itself something on which I've promised to elaborate but have thus far failed to do so. Sorry - soon!) At any rate, it's highly descriptive, and I find it extremely useful.

Today's post, however, is not strictly about the pain. Its focus is rather my dear puppy, Darcy, because he is helping me to get through. Ever since he was little, we have had snuggles in bed last thing at night and first thing in the morning. (The only reason he doesn't stay all night is that we'd have to shut my door, to stop him roaming the flat, and I need it open so I can call if I need to move.)

So, this morning at about six, I having got very little sleep, he came for a snuggle. Then, about an hour later when I needed to flip, he moved off the bed - only to climb promptly on again once I was on my back, and lie next to me along the length of my ribs, with his head on my tummy. He even managed to match his breathing to mine, in an effort to help me regulate it. I've always marvelled at his understanding of the nuances of my situation (I mean, he knows he needs to perch on his wicker chair for me to be able to reach to stroke him) but this was a whole new level. It was if he knew I needed healing, and wanted to provide it.

I love my Darcy dog. He's perfect.

Post the Fifty-Fourth - looking back, looking forward

The post I promised yesterday before I got all existential.

This week, friends and fellow students in the year below at Warwick (as well as my contemporaries who took an extra year) receive the final results of their undergraduate degrees - which means that a whole year has elapsed since I got mine on 25th June 2013. With this in mind, this post has three purposes: to congratulate everyone on their achievements, to gaze back on that day which at once seems so close and so far away, and to evaluate the metaphorical distance I have travelled since then.

Here goes.

To all graduands of the Class of 2014, well done! You've made it - and now's the time to revel in your hard-earned success. Enjoy the elation!

I remember being filled with a mixture of joy and disbelief. Where had those three years gone? But there was also an acknowledgement that it had been a long, hard slog and that all the work had paid off. Yet more paradoxes, I guess, continuing on from yesterday's theme - but I think that's the nature of time, because I have those dual emotions now. I can't quite fathom that it's been a year; yet so much has happened since then that I can't imagine it being any less.

I suppose these contradictions arise from the fact that I'm doing very similar things. I've been going to lectures and seminars, writing essays and now my dissertation. Yet although  they may be similar, they're not the same - because it's the second time around. In between these moments of parity there was a huge transition. I graduated, and I walked to do it, and whilst that marked an end it also marked a beginning.

A beginning of a life in which I have more confidence in myself, in both my physical and academic abilities, because I have proof of what is possible - but also because I no longer feel I need proof. I have no-one to convince but myself, and I think I'm finally coming to realise the truth of that statement, a year on.

So it's been time well spent, and I've lived every day to the full. It's just gone rather more quickly than expected...and that's okay. I can look back and smile and I can grin just as widely looking forward.

Hopefully I'll feel the same this time in 2015, with yet another degree under my belt, and hopefully my friends will too - whatever paths they take after their own results this week. 

Post the Fifty-Third - liminality

Today has been a momentous day for many of my Warwick friends - one which it feels important to mark. However, having myself spent it mostly away from my house (and, consequently, internet technology) I do not believe I will be able to do them justice in the short time I have before bed tonight. Therefore, I have decided to write of it tomorrow, in what will be the first long blog entry for a while now.

Not wanting to skip a day, though, this post serves as an acknowledgement of a realisation  I have had this week. I am between two states, inhabiting a sort of limbo, in all aspects of my life right now. My physicality is fundamentally different and yet I am somehow merely returning to the way things have always been. I am hyper-aware of my body, but this new awareness seems to have arisen through me taking a moment to distance myself from my previous hypersensitivity. I am still a student (and will continue to be involved in academia for some time yet - more on that soon) but I am also living in a world vaguely akin to that of adulthood, with rent to pay, appointments to get to and meetings to have, functioning as an entity separate from my parents - all whilst living at home.

In other words, I am a bundle of paradoxes, but I think that's why things are good right now. Body-wise, I've had a long hill to climb, and the fact that I feel I'm now treading familiar terrain means that I did not actually lose all the abilities I had in childhood - or the muscle- and cell-memory of them, at any rate. Also, having guaranteed care support (from my dear Mama) has allowed me to be more adventurous about life, because it has given me a glimpse of what is possible when one's first consideration is not whether there will be help to get out of bed - and it's made me determined to continue improving physically alongside building a team of people around me who can help to achieve that. Mostly, though, in having a safe space, I have been able to create my own safety, to get my priorities in order, and to have the confidence to trust myself instead of leaving my self-worth up to others.

Regression, oddly, seems to be synonymous with progression, both physically and mentally. Except it's not really regression - and I guess this is crucial - because, although I'm revisiting the realms of my teenagehood, tackling food and physio and mental health, I am no longer a teenager. So I can take what I have learnt since then and use it for my benefit - and that feels wonderful.

Post the Fifty-Second - love and freindship

Sometimes you just need a shoulder, and today's post (if it's long enough to be called that), taking its title from my dear Austen, is dedicated to the lovely friends who provide one no questions asked - and especially to Eileen, Jade and Caitlin. Thank you. 

Post the Fifty-First - Sunday in the Park with Irene

Today has been a lovely, lovely day, spent in Kensington Gardens with a few coursemates to celebrate Irene's birthday. We had a picnic and sat for hours in the sun talking, laughing, quoting Shakespeare and singing the occasional showtune - as you might expect when a bunch of thesps get together. Hence the title of this post, because Doug decided that Sondheim ought to write a sequel in honour of Irene.

Much fun was had. Days like this are what make summer my favourite season - not only is it warm enough to frolic outside with friends (and a dog), but it's warm enough for me to be in short sleeves and without a blanket, so my body can get some vitamin D and recuperate some spoons whilst my circulation fends for itself for once.

The simple joys of life are the best. Happy Jessi.

Post the Fiftieth - knees up

After a long day at the dissertation yesterday, last night Nori, Caroline and I went to Cecil Sharp house for the final monthly ceilidh before all the festivals kick off. There was much dancing, laughter and fun to be had. I felt transported back to one of the public assemblies in my favourite era - the timelessness of folk has that effect - and it didn't matter a jot that I was sitting down. We circle danced, we polkaed and we waltzed - the latter involving both of my dear friends attempting to ride my chair at the same time, one balanced on the front and the other perched on the back.

I'll try and convince my iPad Mini to let me include a picture or two...it was fab, and more than suitable fare for my fiftieth post!

Wheeeee!

Posted with Blogsy

Post the Forty-Ninth - dissertation station

Playwriting is hard. Fun, and I want to do it for the rest of my life, but hard. You know you've got almost to the end of your tether with a draft when you procrastinate by stretching...hehe.

That is all I can conjure up for today.

Post the Forty-Eighth - mind palace

An aspect of the support that I mentioned in my post on DSA was the assistive software which helps me to complete university work. I have many different programmes, but one that I use on most days is MindView - and it is this to which I devote today's update (yet again a short one, sorry!).

MindView allows the user to create mind maps (sometimes referred to as 'spider diagrams') electronically. These are really useful tools for project planning - in case you've not encountered them before, the idea or topic goes in a big circle in the middle, and then it can be broken down into smaller parts with the 'legs' that shoot off. Now, most people would probably do these by hand...but what if (like me) you can't?

That's where MindView comes in. With it, I have been able to create a neat and comprehensive plan for my dissertation (with extensive notes for each spider and each leg to a level of detail to rival Sherlock) that is getting me through my various drafts. Yet another reason to be grateful that I do not actually live in the eighteenth century, although I shall always love it.

  

Post the Forty-Seventh - take to the floor

I wanted to write a coherent and considered post about this, to compensate for the last few shorter ones, but I am still so overwhelmed by the enormity of what I have to tell you that I can only manage a few sentences.

This evening, I had my first session of 'proper' physio (i.e. with a physiotherapist) in almost two years...and I lay on the floor (comfortably) for nearly two hours. Not only that, but I was on my back for the majority of the session, and I even managed fifteen or twenty minutes on my left side. I haven't been on my left side for longer than thirty seconds in about five years.

I don't have pictures because, in order for my physio to do a proper reassessment, I had very few clothes on. So you'll have to trust me - but it happened...I just don't have any more words to tell you how. My heart is too full of joy to be verbal tonight...but perhaps that's eloquent in itself.

Post the Forty-Sixth - standing up for myself

Another short one today. However, to make up for that, I have some rather momentous news. I can now push myself up to standing on my own - by which I mean that all the impetus for the upward movement comes from me. This isn't to say that I can support myself independently in standing (I'm still quite a way from that yet) but I am the once again the one responsible for the transition between sitting and standing. Whereas before my legs would take my weight from the time I was upright, now I can follow through on perching and lever myself up.

That means it's easier for whoever's helping support me to deal with trousers and things, because they can focus on that instead of on me, since as long as I have a good grip on their waist I feel completely stable and safe.

Things are changing...

  

Post the Forty-Fifth - in praise of my chair

Just a short (and early) post today, as it's a busy one, but I wanted to express my gratitude - this time for something which may surprise you. Due to the title of this blog, and the nature of my endeavour to get onto my feet a little, it might come across as though I'm not particularly fond of my chair. Allow me to set that record straight - if anything, my gratitude has only grown over the years. With it being broken for so long, I have been reminded how important it is, and just how lucky I am to have it. That's not to say I ever took it (or any of the others) for granted, because I didn't, but now that it is alive once again I am aware of how many roles it fulfilled and fulfils.

So, thanks, chair - because, as I've said before, however much the thought of living in the eighteenth century may entice me, access to electricity, sanitation and healthcare is not to be forgotten or sneezed at. Nor is the fact that many of our fellow human beings still do not have it. 

Post the Forty-Fourth - Fathers' Day

Roughly a month ago I wrote a post in appreciation of my dear Mama and all she does and is. Today it is my dear Papa's turn. Funnily enough, both of these posts have been preceded by a visit to the Royal Court, a brilliant play...and a broken chair. I think there's something up with the planets. Last night, Mama, Jojo and I had tickets for Adler and Gibb at the Royal Court, and I had texted Papa to say how excited I was about going to the theatre with a working chair. When we arrived, however, I was coming down the ramp and my chair not only cut out but then wouldn't turn on. It was completely dead. Obviously there was nothing we could do at this point, so Mama pushed me in. We happened to meet one of my friends from Warwick, Lily, in the foyer so the focus could now shift completely onto the play and the excitement of bumping into her. Yay distraction! In fact the only reason I noticed my chair was broken during the performance was that the theatre is slightly sloped, and I would normally tip myself back to compensate, but I couldn't. Otherwise I was too lost in the play. It was great and we had a lovely chat at the interval (including with the writer/director, who happened to be the father of one of Lily's best friends).

Once we left the theatre, of course, I was instantly reminded that I was stuck. I texted Papa again to tell him what had happened, in the hope that his electronic engineer brain might know what to do. He said immediately that he would come up in the morning (we had been planning to do Fathers' Day at some point during the week, because we know how busy places get at the weekend) and try and fix it.Which he did. And he fixed it. This rather made my present to him, of a vegetarian slow cooker recipe book, seem paltry – and it's the wrong way around. The daughter is meant to spoil the dad.

So, after having spent a lovely day with him, in order to express my gratitude for once again coming to the rescue, I thought I'd write this post. Thanks Papa – for all the pushing around that you have done, since I was little. For the walks in the woods, putting up with my overactive imagination whilst we were there. For carrying me down to the front of the cinema because back then I was too small to be able to see from one of the wheelchair spaces. For the hours in the library and the books we devoured. For the Sims, in all its incarnations. Mostly, though, thanks for the hugs and your healing hands, for the love and laughter.

And thanks for the pictures, of which the below is one of the earliest, taken in a photo booth in Woking.

I love you.

Post the Forty-Third - nutrition mission

This is a post I've wanted to write for a while, even as far back as the beginning of Walking by 2013, but have refrained from doing so because the subject is rather sensitive and touches many of my nerves, let alone anyone else's. However, with the resurgence of some physical discomfort yesterday (and the fact that it has completely disappeared again today) I'm reminded of the huge importance of talking about the particular issue, and would be very grateful if you gave this a proper read in spite of its length.

That said, I think this is also my first post to be labelled with a trigger warning, so I am going to contradict myself and warn you that you should probably not read any further if you find it uncomfortable, or have problems, talking or reading about food, eating, or any of  the mental health issues related to these topics.

If you're still here, thanks, and it's time for me to be brave.

I have had a complicated relationship with food since about 2005, when I was fourteen and fifteen. More specifically, I have had disordered eating, which I first developed as a response to being told that I was 'too heavy to transfer' (i.e. to stand up and be supported when moving from my chair). Despite the fact that I now know this was not true, because I have never weighed more than about 45kg, at the time I was terrified at the prospect of losing one of my most prized abilities. I didn't think I was fat, so it wasn't exactly body dysmorphia, but I was desperate to lose weight in a bid to stay thin enough to do transfers. Also around this time, I wasn't feeling academically challenged or getting enough physio at school now that I was in one of the the senior houses, and I was incredibly homesick and worried about my physical state. Then in 2006, having lost friends since the age of ten, I lost another (Lauren, who I wrote about a few posts back). 

(That last paragraph isn't a catalogue of misfortunes, but an acknowledgement of the build up of various factors, as well as that, although I did not know it then, I was teetering on the brink of depression. It's something I've not really been able to face up to or articulate until now, when I am in a pretty good space.)

I felt completely out of control - and the one thing I could decide was the type (and amount) of food that I put into my mouth. So I stopped eating and started losing weight. At my lowest I dropped to 35kg, or 5 1/2 stone, which put my BMI at about 13. I wasn't focused on those numbers (in fact I only know them because of all the intervention which followed) but simply on remaining able to transfer.

The irony was, of course, that my weight loss only had a detrimental effect on my body. It made me all the more aware of my stress-related discomfort (in my grief, homesickness and general turmoil I had developed spasms of a strength which eventually managed to pull my left hip out of its socket), which in turn stressed me out further. Yet there is no logic to situations like this, so I couldn't understand that, and kept going. I kept going to the point where my unit leader told Mama that, were I not going home at weekends, I probably wouldn't be alive. 

Home. Another reason for my difficulty was that our lift was broken, and I couldn't go back on a permanent basis (and thereby change schools) until it got fixed or we were moved, so there was nothing to assuage my homesickness. 

We finally moved into our current (wonderful) flat at Christmas 2006, so I finished off Year 10 and left my boarding school in July 2007. I started at our local comprehensive in the September, and we all thought that everything would be okay. It was, on one level - school was great, I had a wonderful support system and lovely new friends - but the physical pain, and the deep-rooted worry that I would get too heavy, was still there. Also, quite soon into term, my dear friend Vicky (who had helped me hugely in getting through our final year at school together, she being a year older and one of the kindest people I've ever known) passed away. It was tough and I still miss her hugely. However, partly to do justice to Vicky's memory, I managed to get through my GCSE exams (thanks to the support of family and friends, which I'll never forget). I did so whilst on medication (diazepam). By this point it was as if I was so far downhill that it didn't matter - though it was more likely because I finally had a structure within which to work and live. 

I say that because, once we finished GCSEs and lost that structure, I collapsed. That's why we call the summer of 2008 'the avalanche' - my pain, and concurrently the issues with food, intensified, my hip was subluxed and my spine curved. I could only eat bananas, and received a referral to my local Child and Adolescent Mental Health Service (CAMHS) where I got the diagnosis of 'disordered eating': not an eating disorder, but an unhealthy relationship to food as a result of my disability. I couldn't read independently anymore, and I didn't think I was going back to school to do A Levels.

That's where the film version of Pride and Prejudice came in, as I've written previously. I literally watched it every day that summer, because I was unable to do much else, and somehow managed to piece myself back together. I got to eating again, went back to school and started Sixth Form. Then I got news of my Starlight wish to meet Keira Knightley coming up in early 2010, and I knew I had something to get better for. Our meeting made such a difference that, gradually, the spasms dissipated and I kicked my several medications. Not only that, but I finished Sixth Form and went to Warwick - and we all know how things went from there!

I wanted to write this post for two reasons. Firstly, to document my attempts at recovery, to remind myself how far I have come - and perhaps to help others struggling with similar things. Secondly, though, I wanted to be honest about my eating issues (both to you and to myself) because I know that I'm not quite there. Food is still too often the first thing that I let slide when I'm stressed or busy - and I also know that, in order to make any significant changes with my body, I really need to commit to giving myself enough energy to do so. 

Hence the title of this post - nutrition mission.

If you're still reading, once again, thanks - and thanks to everyone who has helped and supported me thus far along my journey. I love you.

Post the Forty-Second - voetstoets

Another long and busy day today, and I'm pretty tired, so not feeling particularly comfortable. Despite this, though, I'm happy - because I seem finally to have arrived at a point where I can acknowledge discomfort without berating myself (and my body) for it.

Hence the title of this post - an Afrikaans expression pronounced sort of like 'foots toots' and translated as 'as it is'. It's used most commonly in relation to buying and selling, where it means that the seller is freed of responsibility for the condition of goods (in fact I think it might now even be an official legal term, spelt slightly differently). It also gets used colloquially, however, and that is the sense in which Mama and I use it and to which I refer to today. The connotation is of taking a little bit of distance to regard something exactly as it presents itself, or perhaps even of throwing one's hands in the air and saying 'Ag, well, there's nothing to be done.' ['Ag' is pronounced 'ach', almost, and carries a similar sentiment to the several variations in dialect we have for 'ack' over here in the UK.]

That said, I don't think the figurative throwing up of the hands equates to (equally figuratively) throwing in the towel, because it's not quite admitting defeat. Rather it's taking the time and space to examine the current situation or condition in a measured and unemotional way, and acknowledging that sometimes it's best just to let things be for a little while. By all means use your strategies to get through and even make it better, but also know that it's okay if things shift momentarily. It's not good or bad - it just is.

This makes it a phrase I find especially helpful, because it allows me a glimpse of objectivity when things are difficult or sore. Also, by distancing myself a tad from the difficult bits, I can in turn distance the difficult bits from the good bits. Because, as I said at the beginning, today has been a good day - and it's precisely because it's been good that I'm feeling slightly worse for wear now. Hydro and things are my version of the gym - I must remember that.

So, a language lesson for you, and a tired ramble through the wilderness of the human mind and emotions. Hopefully you'll find as much solace in the saying as I do.

Post the Forty-First - carriages and cobbles

I have had a very, very long and busy day full of car journeys, meetings and tours (at the end of which we went to IKEA) so I am tired and can only manage coherence if this is a short post. That's not to say I won't be writing about today's events in detail - I will, because it has been very exciting.

For tonight, though, I wanted to let you know that not only is my chair fixed but it can tackle cobbles! (Most of the time - the reduced power of the slower motors means I frequently got stuck.)

Why is this important? It means that I'm definitely winning my ongoing feud with sciatica. If I can cope with both cobbles and the extra jolts caused by my chair getting caught in the grooves between them then, well, I can cope with anything. Anything - and, of course, this allows me to take my writerly immersion into the eighteenth century world of my play just that little bit further, hence the carriages in the title. However cringeworthy the final product may turn out to be, at least no-one will be able say I didn't do my research!  

Post the Fortieth - straightening up and flattening out

There's something seriously satisfying about writing my fortieth post and it not being yet another chair update.

Because it's fixed. Yay. 

(I just had to type that one more time.)

Okay, now I've got that out of my system, we can move on. I wrote, a couple of posts ago, about how I've not been sleeping that well because of all the changes my body is undergoing at the moment. The discomfort in the muscles at the right side of my abdomen has meant that I've had to roll onto my back (with help) several times a night. This has been exhausting, both for me and for everyone who supports me (whether it be Mama and Jojo or other friends and helpers), but today I can tell you that it has not been entirely without its positives.

Not only is there an almost straight line between my shoulders and my hips (i.e. along the side of my stomach) when I lie on my back, but we can examine the crease that denotes my curve - and it is getting shallower. Also, and in many ways most excitingly, the part of my left rib which protrudes quite a bit is flattening out. The manner in which my curve manifests itself is analogous to the shape of a corkscrew, in that my pelvis is rotated one way and my spine the other. The result of this has been that one part of my ribcage is significantly more prominent - to the degree that we quickly got to calling it my 'third boob'. The fact that it is becoming less so, however slowly, is wonderful. It means that my spine is gradually returning to its old form, which is half the battle. 

Now just the hips to get into gear too. Surgery? What surgery? I'm just letting my skeleton do its thing, on a dark dark night, in a dark dark town, on a dark dark street, in a dark dark basement...

(Points if you get that reference - and we do actually live in a basement flat!)

Post the Thirty-Ninth - chair update five

I am mobile!

We went to the wheelchair clinic this afternoon for the engineer who knows me (and my chair) really well to have a try at fixing things. He investigated the particular fault code that has been flashing up this time, and it turns out that it may not have had anything to do with the motors at all, but been a result of a dodgy connection between the micro-switches that cut the circuit when necessary. He has therefore temporarily disabled them (the irony) and sent me home for 48 hours to test whether that is the issue, whilst in the meantime ordering replacement switches, so he can swap them over quickly once we know. Crucially, he's ordered them himself, instead of waiting for the maintenance company to do so - because I think he's as fed up as we are.

I am the happiest Jessi right now, because not only could I take Darcy for a walk on the Heath, but it seems like the remaining repairs can happen at home - which means my chair doesn't have to go away! Huzzah.

Sure, it's still slower due to the (possibly unnecessary) change of motors, but I can cope with that. After all, slow and steady wins the race, and as long as I can take my dog for a walk I don't care how fast I go!  

Post the Thirty-Eighth - twenty-two

If Nancy Sinatra provided the soundtrack to yesterday and my once again broken chair, today's has come courtesy of Cyndi Lauper. That's because today is my dear friend Lauren Scott's birthday. She would've been twenty-two, and our favourite song to sing together was Girls Just Wanna Have Fun, so I've had it up on Spotify all day. I wrote last year, on her twenty-first, about how difficult I had found it to listen to it without crying, even all these years on.

That hasn't changed - there have still been lots of tears today - but they've somehow had a different quality. Although the grief is present, as I think it always will be, I've also been able to sing my heart out - and, in a funny way, I think that change has come about because of the continued situation with my chair.

The thing with Spotify is that, if you're playing an artist rather than a specific playlist, it automatically cycles through the rest of that artist's tracks. Girls... was followed by True Colours and Time After Time, both of which have resonance from my friendship with Lauren. As best friends do, we got each other through some of our darkest times. She held my hand through my homesickness at boarding school, and I endeavoured to hold hers in hospital - which brings me to the point of this post. The most wonderful thing about Lauren was that, even when she was at her sickest, she refused to let her disability get the better of her. I suppose it was her one form of teenage rebellion - she would choose when it was time. If so, was a good one to choose. It kept her strong and cheekily cheerful, and I now understand that there was a very deliberate choice behind our love of Girls..., whether we knew it then or not. 

To cite the film Inside I'm Dancing, we were very definitely dancing in our heads, or maybe even with our bodies (a little finger tapping surreptitiously on a wheelchair tray) - and laughing good-naturedly in the face of expectation as we did so.) We would notice the difficulties, sure, and pick each other up - but then we'd have a chuckle. That was our unspoken agreement, conveyed in the twinkle of an eye. I like to think the same thing would've happened yesterday when my chair broke again.

So thanks, best pal, for still being here, even if not in sight. It's just like Cyndi sang...I will find you, time after time, year after year, in the memories and the strength that we shared - and, at some point before your twenty-third, with or without my chair, I am determined to come home 'in the morning light'. (However much the appeal of clubbing mystifies me - you were always more fond of parties!) And, when I do, I'll think of you.

Happy birthday - we're lighting a candle tonight.

Post the Thirty-Seventh - sunshine and showers

 Upon waking this morning and finding it was such a gorgeous day, my first desire was to take my beloved Darcy out for a long walk. I knew that things would be a little slower with the new motors, as they've changed from 10kph to 6kph, but I wasn't going to let that stop me. After all, it would be the first time I have been able to take him out in the last two months. So, once we were up and had shared photographs and stories of Florence with some friends who came round, Mama and I decided to do just that.

I couldn't wait to get into the sunshine, to grin at the blue sky whilst right beneath it instead of through a window pane, and I did. We went outside. I didn't even need my almost ubiquitous blanket, let alone a poncho. I was over the moon with, well, the sun.

Then, we turned the corner outside our flat...and my chair couldn't make it over one of the paving stones, so it cut out, and started beeping. Exactly like it did when it first broke down. This was concerning, but I was determined not to be foiled in my plan of getting over to the Heath, so I switched it off and on and it seemed to be fine. We continued. As soon as we got to the next (tiny) variation in terrain, however, it happened again. I switched it off and on, and we managed to get out of the gate.

This little process kept going as we moved down the pavement from our house to cross the road. The motor would cut, my joystick would beep, and I would repeat the on/off binary. We would keep moving. When we got to the curb which signals the entrance to the Heath, my chair stopped, but I refused to let it win. So much so that we made it down the first pathway. The trouble was, though, every time it cut it would jolt - and that was hugely uncomfortable. This meant I was getting steadily more upset, emotionally as well as physically (hence the showers in the title - for once my references to them are figurative and not literal, eh?). 

Mama persuaded me to stop by a bench, which I did, and she suggested that we go out for lunch instead, as the walk didn't seem to be on the cards. That way, she reasoned, we could still be in the sun, but I wouldn't have to move much, and she could push me if necessary. (I love my Mama and her logic.) We did, and had a lovely lunch, deliberately ignoring the beeping that accompanied the brief journey there. We bumped into a good friend, and I had a milkshake with my food, revelling in my blanket-less warmth and the delicious (and novel) sensation of the sun on my shoulders. Nothing but joy was the order of the day, I had decided, and I would carry that through.

Of course, I do not want to suggest that I wasn't aware that there was an issue. I've already mentioned the rain on my face on the Heath - and, on the way home, the chair started pulling to one side as well as beeping, which basically means that the new motors aren't powerful enough to control the chair. More than that, now we're home, it's back to its old tricks of cutting out and beeping as soon as I try to drive at all. So we'll be back on the phone to the wheelchair clinic tomorrow to order new parts all over again.

That said, I'm hugely grateful to have had even just a little reminder of what independent driving feels like. I can infuse that exhilaration into my non-chair-based exploration (which is exciting enough in itself) and it'll keep me going as I traverse this extra (unexpected) bend in the road. I promised yesterday that I wouldn't become complacent, and now I don't have even the slightest reason to, so there's no worry of that.

Perhaps my chair is just being sneaky and telling me to get a move on. If so, challenge accepted. After two months of being walked over by bureaucracy, I think it's about time I returned the favour. 

If you want me, I'll be listening to Nancy Sinatra.

    

Post the Thirty-Sixth - chair update four

The plan for today's post was to write a coherent and interesting account of my Mama's awesomeness by telling you all about the conference in Florence from which she returns later tonight. That will have to wait a while, though, because...

The joyous day has arrived! After exactly two months (it started misbehaving on 7th April) my chair is finally fixed! Huzzah! The engineer came at just after two today, left just before six and now, at last I have a working chair.

I cannot stop grinning.

Having had (another) four hours or so in bed to reflect, I can promise you that this will not make me complacent about my walking mission. Far from it, because this whole process has taught me very definitely what I thought I understood before - that technology is hugely unreliable (and, also, that if you want something done quickly you're usually best off doing it yourself). So, really, the fact that my chair is fixed has made me all the more determined not to need it as much - if only to save Mama's arms!

For now, though, I hope you'll excuse me - I'm going to zoom up and down the corridor a few times, because I can.

Thanks so much for all the support. I truly wouldn't have survived these last two months without it!

Love Jxx 

Post the Thirty-Fifth - I, too, am Higher Education

Many of you will recognise today's title as an adaptation of the slogan used by students seeking to raise awareness of the presence (and importance) of ethnic minority groups on university campuses. Now, I am Caucasian, so I cannot claim to share the experiences articulated in these campaigns. That said, this post constitutes my contribution to #DSAday, a nationwide lobby by students against proposed cuts to Disabled Students' Allowance and, as these cuts have the potential to exclude students with disabilities from Higher Education, the wording seemed extremely appropriate.

So, in the spirit of the campaigns whose name it shares, for this post I have taken some photographs of me holding up signs that relate to my experience of the importance of this provision. First, though, I feel I should explain what exactly it involves. To phrase it fairly simply, DSA is a government-funded grant facilitating study-related support for students with disabilities. The provision covers a wide range of conditions, from physical and sensory impairments and chronic illness, to mental health issues and Specific Learning Difficulties like dyslexia. It includes:

• Computers with individualised adaptations and/or specialised software

• Note takers, scribes/readers and extra time or breaks for exams, and other non-medical help such as library assistance or mentoring support

• Reimbursement on course-related costs incurred as a result of disability (encompassing everything from extra printing and photocopying to a small discount on accommodation fees)

Due to the nature of my cerebral palsy, I require almost every single item on each one of those three bullet points - and, thanks to DSA, I have had access to them throughout the course of both my undergraduate and postgraduate degrees. They have been vital, and they will continue to be so. However, under the proposed cuts, most of these will be removed. Note takers and scribes are to be cut completely, computers will be limited to those students who have only the most (verifiable on paper) complex needs, and students presenting with dyslexia will only be eligible if they are either profoundly affected or have additional complex needs. Also, there will be no reimbursement for accommodation costs (if, for instance, the most expensive block on campus is the only one with rooms big enough for my chair).

With these rules (dyslexia excepted, since I do not have it, though many of my friends do) it would be impossible for me to study - as you will learn from the photos below. Moreover, I am not the only one - these changes will be to the detriment of the educational futures of the vast majority of students (and, indeed, prospective students) who have disabilities in the UK. Hopefully, if enough people say no, they won't be put through. Otherwise, we may well disappear from academia altogether. As we've only really just got here, I don't want that to happen, do you?

DSA means I could afford to live on campus with help instead of 100 miles away.

DSA means the difference between good lecture notes and NO lecture notes.

DSA means I can dream of doing a PhD. DSA cuts means I may not be able to.

Post the Thirty-Fourth - chair update three

You probably weren't expecting to see another of these so (comparatively) soon, given that we had no idea about when parts would be coming. I know I certainly wasn't. Nevertheless, I do have news, although I once again can't do what I so desperately wanted to and shout to the rooftops that everything is fixed.

Yesterday morning we got a call (completely out of the blue, after a period of radio silence from the engineers) to say that the parts were in. If I was agreeable they would squeeze me in at some point today (Thursday), with the caveat that the schedule was full, and they couldn't give me a timed appointment. This meant I'd have to stay in bed until (whenever) they came but, even though my muscles don't like me to lie down for too long, I knew I could cope if my chair would be fixed at the end of it.

So I stayed in bed this morning, and waited for the engineer, who arrived at about 1.30. He took the chair out to his van to fit the parts (notice the plural there - it's important). At exactly 2.30, I got a call from one of the admin team at the company, to say that there was a problem and he had phoned her because he didn't know what to do. He had only been given one of the two motors (which, if you remember, was the cause of the delay last time because they didn't know two were needed) even though now they had ordered two. The second one was at the office, it just hadn't been put into his van.

He wasn't able to fit one without the other, so he's coming again at some point tomorrow morning (Friday). Then it should be fixed. That's great. Understandably, though, I'm not letting myself get overly excited - especially because I only got up at 3pm today and had nothing to show for it.

I'm not upset (there's no point) and I'll be perennially hopefully, as always. I'm just going to wait until I can get in my chair and actually drive around before I let the euphoria loose. I'll let you know if that day arrives tomorrow...tomorrow.

Post the Thirty-Third - friendly fun!

Another short one today, because I've had a day full of studying, and I'm off to uni (for our last official class!) very soon.

However, I didn't want to leave without sharing this exciting (albeit seemingly small) development. I have two of my closest friends over whilst Mama is away, and I can still do all the amazing things that I can do with her, like pushing myself out of my chair. That's because I feel safe - but it also means that I'm getting to the point where I can trust that I  am able to do things, without needing someone else to give me that confidence.

Once again, it's just the beginning, but it's a huge step (pardon the pun!) in the right direction. 

Post the Thirty-Second - hips and hydro

A super short one tonight, because my brilliant Mama is headed off to a conference in Florence (about which I'll write on Friday) at 5.30 tomorrow morning, and I don't want to keep her up too late.

So, just to say that I had yet another great hydro session, in which we extended the work that Suzy and I did on land yesterday in the water (literally extended, in the case of my muscles. And we were once again able to get me (and my hips and spine) into an overwhelmingly, if not quite completely, symmetrical position.

The progress continues - and it won't be stopping any time soon.  

Post the Thirty-First - taking it lying down

When I wrote yesterday that I didn't have anything particularly exciting to share with you, how I should have phrased it is that I wasn't doing anything exciting. I say that because yesterday was very exciting indeed for my aunt Lucy. She ran the Comrades Marathon in South Africa. It covers a distance of over 89km, and I'll be writing about her awesome feat at some point over the next few days, but I want to get more of a feel from her of what it was like to run the race before I discuss it in detail.

Today, then, I want to elaborate on my 'sleep loose' post, and the work I did with Suzy this morning to try an alleviate some of the aches, because it showed me just how far my body has come. Reminders like that are hugely important when dealing with pain.

So, this morning, I lay on my back on my bed. Now, you might think that this isn't such a big deal, because since the sciatica has dissipated I've been comfortable enough to spend quite a bit of time on my back. To the uninterested observer, you'd be right, of course - because, during those times very little has ostensibly changed. After all, it's not as if I've suddenly managed to get my legs down and flat on the bed. On the contrary - they're still wanting to be supported, and the right one is especially vehement in that regard.

However, upon examining the situation a little closer, you'd find that all sorts of things have changed. Not only am I able to tolerate lying on back whilst being stretched, but I can cope with my position being changed. This meant that Suzy could move my shoulders and hips in order to get me into the proper alignment. AND IT WAS COMPLETELY COMFORTABLE!

You're probably wondering why on earth that would excite me enough to write in capitals. Well, if I'm comfortable being put into the correct position, it means my bones and joints and things are still flexible. So now I just have to get my muscles strong enough to keep me there!

Yay!   

Post the Thirtieth - journaling in June

Unfortunately this has been a super studious Sunday, filled with much dissertationing, and I don't have anything spectacularly exciting to share with you. However, since today heralds both the thirtieth post (!) and the first of June, I thought I'd write a little piece on the subject of numbers. Specifically, numbers relating to my blogging ventures, both past and present.

So, here goes:

Firstly, the thing that most surprised me: people still read Walking by 2013! It has had 15,350 total page views - and, whilst the majority of those occurred during the time in which I was regularly updating, 165 (!) were in the last month. It has also been visited three times (not by me, as I have my page views blocked so they aren't counted) both yesterday and today. This makes me wonder whether I should break my own rule of leaving it as an archive to write an update and make people aware of what's going on over here. What do you think?

(At least I've finally got round to changing my profile...happy now, Lauren Smith!?)

Secondly, Walking by 2015 has itself had over 2,500 views (2,612, to be precise)! That's overwhelming. I mean, I know I've been posting links to Facebook and Twitter, but that's it - and the views come from all over the world. To be shown that people are actually interested (maybe even invested) in this ramshackle little ramble of mine is amazing, and humbling, ways that I (for once) can't quite fit into words.

So I want to simply say...thank you. Thank you for reading, for rooting, and for running with me. It means the world.