#WordyandWheelyWednesdays: Motion for Emotion

Hello my lovely readers

In many ways this couldn't be a more different post to last week's - where the tone of that was upbeat, this might be construed as sombre. That said, they're both about navigating the nuances of life with disability; and, in any case, this post needs to be written.

On Saturday, I received the news that another dear friend had died. This time, it was Shane (or Martop, as we called him) who is probably best described as the resident joker - but really a massive softy - of our close-knit class at Treloar. I, along with the rest of our group, couldn't (and still can't) believe it. Although within a community like ours we are far too intimately acquainted with death, and exist with perpetual tenterhooks at the back of our minds, it is still a shock - and especially in this case as Shane was always such a fighter and had come through so many times before. I have been feeling absolutely desperate, not just with my own grief but in thinking about my friends, who had extra years at school and college with him after I left. I wish we could all be together right now instead of spread across the country, and that our next reunion did not have to be at a funeral. If you are reading this, aside from my private messages, I want you to know that I am here for you just as you are for me.

Perhaps unsurprisingly, this latest instance of grief has brought up all of my previous losses as well, and so I have spent the last few days engaged in various levels of self-care in an effort to process the fact that they now number 13. Although of course I am allowing myself to sit with the feelings and not pressure or judge myself too much,  I have also wanted to find something productive into which I might channel my emotions. Given my recent physical improvements, I have decided to capitalise on them and do an event in memory of all my special people - not least because our connections were often sport or outdoors related. I wasn't quite ready to go public about this, but Shane's passing has reminded me that we can't afford to waste a moment, so here it is.

I am going to walk 100 metres with the support of a walking-frame (not the one pictured) in September to commemorate all of my special people, and raise money for Starlight whilst doing so, because they are responsible for getting me through my roughest patches and reminding me that I have both the strength and the responsibility to keep going. The event is called Parallel London and you can read about it here: https://www.justgiving.com/fundraising/Parrott-Does-Parallel

I apologise if this isn't the most eloquent post. It is heartfelt, and it's feeling easier at the moment to translate emotion into motion than words. Thank you for reading as always. 

Love and tight hugs until next week

Jxxx

#WordyandWheelyWednesdays: Feeling Wheely Free

Hello my lovely readers!

Another slightly slapdash post this week, that yet again isn't about what I originally planned. However, it does link in with the planned posts, as will hopefully become clear when they are uploaded.

I am currently up at uni and, for the first time in a very long while, I find myself blessed with a full team of PAs, comprised of both old hands and new recruits. Not only that, they are all lovely and keen, and genuinely want to make it as easy as possible for me to live my life the way I choose. I couldn't be more grateful. 

Of course I'm a little reticent to get too excited just yet, but that's kind of what this post is about - because somehow, even though we're all just settling in, I'm still able to maintain the improvements I've made through being at home. Usually when I'm in a newer situation, things start to slip, both physically and mentally. This time, although of course there are tricky moments (like nearly getting locked out of my flat this evening because the locks are so stiff and there's a real knack to opening them - don't worry, Mama, all sorted), I'm just able to laugh and go with the flow.

I don't mean that everything's perfect at all - my body is still my body, with its quirks, and my mind is still my mind, with its qualms, so aspects aren't as great as perhaps my various therapists might like them to be. 

Yet I seem to be more okay with that imperfection than I've ever been before; thanks in no small part to the awareness that I have people who will catch me (literally) if I don't quite manage to keep myself up. So much so that, when I got too hot today, I was brave enough to shed my hoody and allow the rare Plaid Parrott to make an appearance on campus - way beyond my usual comfort zone.

Photo credit Lynda Obeng

I guess the message of this entry is summed up in its title - I'm feeling Wheely free and, for the moment, trying to bask in that without doubting my judgement. Who knows, maybe the sun's gone to my head. Whatever's made it possible, though, here's hoping it stays for a little longer.

Love until next week,

Jx

#WordyandWheelyWednesdays: Medicinal Hiatus

Hello my lovely readers!

Not quite a week off, but a very short entry, after a very long day. The title of this post relates to the fact that Mama and I have taken a spontaneous and brief trip up to Edinburgh. We are visiting cousins who are over from Canada, so I allowed myself a day off for health and happiness in the Scottish sunshine.

Part of this involved a medicinal glass of Scotch, which somehow tastes even better when drunk in Scotland. And then a catch up with the glorious Gimby! I am one contented Wordy, Wheely, Whisky drinker...and now I'm off to bed.

Love until next week

Jx

#WordyandWheelyWednesdays: Whirlwind

Hello my lovely readers!

This week's #WordyandWheelyWednesdays entry is super speedy, because it's the first week back of term, and my time is a whirlwind of meetings, rehearsals and the required logistics to get me to said meetings and rehearsals. So, whilst I have a lot to write about, I haven't the time for more than a few sentences at the moment - and, as per the Wordy element of this blog title, that isn't enough to do my topics justice.

This means there'll be a slight hiatus in proper updates (hopefully only a week) until things are a bit calmer.

I hope that's okay.

Love Jx

#WordyandWheelyWednesdays: Spoons

Hello my lovely readers!

This week's #WordyandWheelyWednesdays entry is on a subject I've written about before - spoons. Not literal ones, but the metaphorical usage of them as an explanation of life with disability and chronic illness. You can read my previous post here (and more about the theory that inspired it here) but I'll give a brief summary in case you'd rather not - or, in fact, you don't have the spoons to do so.

Spoons are essentially used as a figurative example of energy management in life with disability or chronic illness. Each day, you have a certain number of spoons, and tasks require different amounts to complete. When you have used up all your spoons, that's you done. Some days you have more spoons than other days, and it often fluctuates. 

I am incredibly lucky in that I'm currently relatively stable 'spoon-wise', but that has only recently been true, and the spoon theory has been both incredibly comforting, and helpful as a pointer to other people, in the years since I discovered it. Simply put, spoons will never again be mere cutlery for me, and I will forever associate any images of, or references to, them with their function as an energy marker. They are something I cherish and I shall always acknowledge their importance in my life.

Imagine my delight, then, when I went to the opening of our dear family friend Ali's art exhibition and found that she had painted a still life of some spoons...  I just had to buy it - and now, not only do I have a permanent (albeit pictorial) store of spoons to look on when I need strength, but it came from a very meaningful person.

So thanks, Ali, for painting that collection of spoons. You probably had no idea of its significance when you did, but you certainly do now (after I gushed about it!), and I couldn't be more grateful. I'll hang it where I can see them when I need them most - and in the meantime loads of luck for the rest of your showing.

(Copyright Alison Turner)

Love (and spoons) to you all until next week

Jx

#WordyandWheelyWednesdays: Vicky Angel

Hello my lovely readers

Today's #WordyandWheelyWednesdays post is rather different from last week's, because, where last week concerned an expression of love for myself, this week concerns an expression of love for my dear friend Vicky. She would have been 26 today. 

When I first read Jacqueline Wilson's book Vicky Angel at primary school, I never thought that I would have one of my own, nor indeed angels named after all the other people I have lost. Grief, especially grief around losing friends, is not something we are comfortable discussing in society; preferring not to talk about it unless we absolutely have to, and often not considering it until it touches us. As I have learnt throughout life with my disability, though, it is far more present an emotion than most people realise - and it is something that only talking can help us work through and deal with. 

That is why, since primary school, I have held onto Wilson's book with all of my heart - because it showed me that both grief, and my responses to it, are valid and important. Crucially, it taught me that one of the best ways to process things is to remember that you carry your special people with you always, even if you can't see them; and that it is both natural and acceptable for happy memories and sadness at their absence to co-exist.

This is how I feel today, on Vicky's birthday, because I am wishing we could be together to celebrate it, whilst simultaneously feeling extremely grateful that I got to have her in my life at all. We had so much fun, writing stories and sharing secrets, and I can't help but feel sad that we aren't still doing that now. Then I am reminded of her cheeky grin and the way she could make me laugh when I was homesick or stressing about work, and I know she wouldn't want me to dwell too much on her not being here, but rather to head out and make the most of life - just as she always did.

So, tonight, I'll be watching a play about another community who are well-versed in loss, living at the height of the AIDS crisis in the 1980s. It is called Angels in America, and it celebrates life and love, without shying away from the difficulties. As I watch, I'll think of my own angel, honour her life and wish her the happiest of birthdays.

Love you always, darling girl xxx

#WordyandWheelyWednesdays: On Self-Love and Subversion

Hello my lovely readers!

Today's #WordyandWheelyWednesdays entry is more in line with my usual postings, in that it's about happenings in my life, but they are nevertheless more abstract changes than specific events. Hopefully it'll make sense and you'll stick with me.

Most people who read this blog (whether you know me 'in real life' or not) are probably aware that I've struggled with body image for a long time now. This has a number of causes, but the most prominent one has been my spinal curvature, and the fact that it makes various aspects of my body 'not look like it should'. As a result, I find it very difficult to see myself in mirrors (even if it's just a glimpse), and I usually hide as much as I can underneath bulky hoodies - accompanied by my ever-present blanket - to try and be as inconspicuous as possible.

So far, so Jessi - and yet, so hypocritical, because it's exactly the opposite of the advice I give to my dearest friends. This is something I've only realised very recently, despite well-meaning and sincere people (both friends and family) trying to get it across to me for years.

What changed, then? I was having a conversation with a friend and she observed how other people necessarily take ownership of my body, for instance in the swimming pool or when doing personal care, so no wonder I feel distanced from it. For me, my body is not something I have autonomy over, but something that has stuff done to it. Moreover, the societal narratives about beauty do not fit with my physical configuration - and that is the key. Historically, bodies with disabilities have been devalued in order to place their occupants under coercive control; it is a lot easier to render someone passive if they feel unworthy.

From this, finally, after years of activism for other people, I have found the answer for myself - hence the title of this week's post. In such circumstances, the expression of self-love alongside disability is a highly subversive act. In the current political climate, it seems especially important to reject dominant oppressive discourses and, if I'm doing it in all other aspects of my life, I had better apply it to my body as well.

So, in an effort to begin and aided by the combination of being at home and warmer weather, over the weekend I decided to try out wearing plaid shirts and plaits again. It worked and was comfortable. I felt like myself again; so much so that I was brave enough to change my profile picture on social media.

This is not to say that things will shift overnight (far from it) and neither is it to suggest that I wasn't happy with the way I dressed before. I love my hoodies and am extremely proud of the collection I have accrued - and comfort (both physical and emotional) will always be my priority. There will be days when I don't have enough spoons to think about dressing in a particular way. And that is perfectly fine.

Because that is what's different - I know I am perfectly fine. Intrinsically. I also know I won't always feel that way, which is equally perfectly fine.

It's just nice to have made a start.

On that note, love (yourselves) until next week.

Jx