#WordyandWheelyWednesdays: Resilience

Hello my lovely readers

This will be another relatively short post, as I still don't quite have my words back - but I suppose that makes sense. 

How does one linguistically encapsulate a pretty small period of time in which there was a conference, a funeral, a charity haircut and a snap general election, as well as dates of both personal and political significance (from the first anniversary of the Orlando tragedy to the birthdays and anniversaries of several of my dear departed friends)?

In the lengthy ramble of a (probably grammatically incorrect) sentence, it turns out - i.e. not very well. So, instead of boring you with either my emotional rollercoaster or the strategies I've used to power through, I'm offering you a photo as evidence that I've managed to do so. Somehow I've found a semblance of resilience, hence the title of this post. I'll leave it to you to work out what is different about me (not my new hair!) though I will say it has to do with physical support structures, and straps...!

And I'll end with a sincere thank you for my emotional support structures, too, of which you readers make up a significant part. I'm so very grateful to have you along with me, both on this specific 'marathon' mission and in my life more generally. You are just wonderful and so generous in every way. I'm overwhelmed with the support for my Parallel London walk thus far - if you'd like to read my fundraising story for Starlight, you can click here.

Love and gratitude until next week

Jx

#WordyandWheelyWednesdays: For Martop

Hello my lovely readers!

Today's #WordyandWheelyWednesdays entry is comprised (mostly) of a creative piece I wrote in the immediate aftermath of the news about Shane, before the enormity had quite hit me and I lost my words. It wasn't originally intended for this blog but, as I'm still struggling to form sentences, I thought I would add to it a little and post it - not least because we are all coming together today to celebrate his life. I hope it suffices, mate, and I love you:

When you’re little and people start to talk to you about being disabled, they mention things like physiotherapy and other physical interventions, as well as the fact that you’ll have to get used to people staring at you and asking questions they wouldn’t dream of putting to anyone without at disability. Questions like “Do you sleep in your wheelchair?”, “Could you go to university?” and, later, “Can you have sex?” What they don’t tell you about is the grief: about the day you’ll come to understand that eventually you’ll be one of only a handful of students from your special school still alive. Or about the fact that the kid you’re wheelchair-racing down the corridors with one week might go into hospital the next – and not come out. Or about how, due to the difficulty of navigating great distance with disabilities, most of your class reunions will coincide (of necessity) with yet another funeral. And they definitely don’t warn you that the rest of the world has absolutely no formula for dealing with such situations, because people can barely bear to broach the idea of one death, never mind many.

However, they also don’t tell you about the joy – the intense, incandescent joy of forming fast and firm friendships because you know that you have to make the most of every moment. That's what our class bond was like, tenacious teenagers throwing everything we had at the world, whether in the humour of pretending we were Andy from Little Britain or in the relief at finding characters living lives like us in Inside I'm Dancing; even if the actors weren't wheelchair users. 

So thanks, Martop, for being one of those fast and firm friends. Thanks for the hockey games, the slalom scorekeeping (even though we nearly always tied because our chairs went at the same speed). Thanks for being there for chats and early Youtube binges. Thanks for all the times you (rightly) called me a muppet and for knowing when you were being one yourself.

I'm wearing my footy shirt today - I hope you'll see us in our sports gear and be proud. I'm certainly proud to have known you. Still can't quite believe you're gone but I'm so very glad you were here.

I'll stop being soppy now because I know you'd find it hilarious.

Love you always

Marrott xxx

#WordyandWheelyWednesdays: Just keep swimming

Hello my lovely readers

A very short post this week as I still don't seem to have found my words yet.

So I thought you could have this video instead, to show you that I am keeping going on my mission.

Thanks so much again for all your support thus far - it really does mean so much.

Love and gratitude until next week

Jx

#WordyandWheelyWednesdays: A Week Off pt 2

Hello my lovely readers!

It has been quite a turbulent time, both personally and nationally, so due to that, and out of respect for all those affected by the events in Manchester, I'm taking a week off blogging properly.

I do however want to say the hugest of thank yous for all the generosity so far on my campaign for Starlight. I am overwhelmed that I have surpassed my target by so much and am so very grateful. As a thank you, and a reminder that we can get through anything if we stick together, have this video from the South African band Freshlyground:

Love and gratitude and tight holds until next week

Jx

 

#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