#WordyandWheelyWednesdays: A Wordy Whim

Hello my lovely readers!

Tonight's #WordyandWheelyWednesdays entry is something a little different from my usual posts, although it does combine both the Wordy and Wheely elements of this blog and my personality.

Anyone who spends even just a little amount of time with me will probably glean that I love poetry - reading, but especially writing, it. Actually, even if you go just a few posts back, you can verify that for yourself. You'll probably also be aware that this hobby, alongside my PhD, means that I spend quite a bit of time on a screen, just as I am now, to write this post.

So, in an effort to remedy this a little, I've been on the hunt for some years now for an alternative piece of technology - because, though I can write well with a pen or a pencil, and enjoy it very much, it gets tiring.

Imagine my delight, then, when a lovely little vintage shop in Leamington (Berylune, self-termed 'a pint-sized department store') advertised a typewriter. The independent company have been open since 2012, when I was in second year, and I've followed them ever since in the hopes of getting my very own portable gem. As of last Wednesday, that dream came true, and I couldn't be happier - because not only is it perfect, it's fab for physio!

Here's to typing...and to my fully-fledged hipster transformation! Hehe. Huge thanks to Berylune and love to all of you until next week!

Jx

 

#WordyandWheelyWednesdays: Working Woman

Hello my lovely readers!

As today is International Women's Day, I had planned to write a post about that - especially due to the labour-focused element of the day's origins in the Garment Workers' march, because my thesis currently has me immersed in issues surrounding disability and employment. These are particularly pertinent to remember in the context of recent suggestions by MPs that it should be acceptable for workers with disability to be paid less than the minimum wage, supposedly to increase our possibility of employment and allow us 'the dignity of work'.

Ironically, though, I haven't had the time to write that post because I've been too busy with work, of various different kinds. So I want instead to express my gratitude for the people who have made it possible for me to do that, from the previous generations of women and non-binary people with disabilities who fought (and still fight) for employment equality; to the wonderful PAs that I have; and the two women with whom I've been lucky enough to spend most of this week - my inspirational mother and maternal grandmother.

Also, a reminder that feminism is about equality - and International Men's Day is 19th November.

Love until I return properly next week.

Jx

#WordyandWheelyWednesdays: Dear Fifteen-Year-Old Me

Hello my lovely readers!

Today's #WordyandWheelyWednesdays entry is a narrative poem for Eating Disorders Awareness Week.

A Content Note for those not here from social media: food, eating, eating disorders, PTSD, abuse

The inspiration was found in the survival instincts of a precariously-placed daffodil, by my car door (picture below). The courage to post it was found through a friend's brave example on Monday night. I've not written about most of this online before, so if you're still reading, thanks - it means a lot. Also, if you're in the UK and you or someone you know needs help, visit https://www.b-eat.co.uk/

Dear Fifteen-Year-Old Me

I’m writing this from twenty-five

to tell you certainly,

a decade on, we’re still alive –

and fin’lly feeling free.

The metre marks the wheel tracks

we’ve left, trundling along,

to let you know I’ve got your back

and am singing out our song.

I’m sending you the strength to cope

with everything at school –

a beam across the years, in hope

you’ll feel less ‘a fool’.

To clarify, for lifts and things,

you NEVER were too heavy!

Our standing is a gift we bring;

our legs are strong and steady.

I know she told you otherwise,

to keep you in your place,

but the real issue with your size?

You took too little space.

I know you hoped, by cutting food,

that you would disappear –

the only way you thought you could

escape the pain and fear.

So, gradually, your portions

got more and more controlled –

unlike your raw emotions,

which our body had to hold.

Then he decided you could be

his brand new protégée

and promised disability

did not scare him away.

He led you on, the others too,

he made you feel safe

and then he ripped that trust in two,

and threw it in your face.

He leveraged his authority,

used it for his own tack –

so, as a matter of fact, did she,

not thinking of its impact.

But let me now remind you,

they pounced upon your panic,

and there was nothing you could do

to alter that dynamic.

Of course you wanted to be small,

and keep yourself well-hid;

‘cause the crucial point about it all

was that we were just a kid.

Yet we have travelled far, since then,

and so much time has passed,

that I can tell you, soon, again

we’ll love our self at last.

It’s taken all the years between

to get us to this point,

for the pain that started as a teen

was nestled in our joints.

It took the place of spoken words

you could not shout aloud

in knowledge that you’d not be heard

beyond the secret shroud.

But now we’ve had the chance to talk,

about what’s in our chest,

we’re shedding the traumatic chalk

for some much-needed rest.

We still have many miles to go,

and several hills to climb,

but now I let our body know

that anxiety is fine

and so no longer is it stuck

in physicality,

but we can wade through all the muck

to find ability.

Though I still battle demons

at meals every day

there are now many reasons

that tell me we should stay.

I don’t know where we’ll zoom to next,

but I’m glad our paths once crossed,

and I promise to try and protect

us both from further cost.

 

  

#WordyandWheelyWednesdays: Woofy and Walky

Hello my lovely readers!

Last week I wrote about all my favourite aspects of being at home. This week I'm not at home (and actually at the beginning of a pretty long stint at uni) but nevertheless I'm going to write about a combination of two of those - my physical regime and my dogs.

At the end of my post about my prematurity, I mentioned that I had tried my hoist and walking sling again, to check that it was still comfortable. As was hopefully evident from the photo I included, it worked, so when I had a whole week at home I was excited to have another go. Not only did I walk successfully across my room for the first time since before BA graduation, I then had a cuddle with my dear dogs - whilst standing up! They were a bit confused, since it's not my usual position, but once they realised what was happening there was joy on all sides.

Rather than me rambling on, though, you can just verify this by watching the short video we captured:

Now the plan is to walk with them across the room - but I think we need a few more desensitising sessions before we attempt that! At the moment I'm just happy that this bit was successful! Hopefully our joy will come through on the video.

Love until next week

Jx

#WordyandWheelyWednesdays: H is for Home...

Hello my lovely readers!

This week I'm at home, for a variety of reasons, so I thought I'd use tonight's #WordyandWheelyWednesdays entry to document some of my favourite things about spending time here. Most of these happen to begin with 'h', so I had an excuse to indulge my penchant for alliteration whilst making this list, too.

Health

When I'm at uni, I'm there to do uni things, which often involves long days spent on campus with little opportunity to get out of my chair. This means I don't always have time to factor my body in - so, when I'm home, I grab the chance to reverse that priority through myriad appointments. Now that I'm twenty-five (!), I'm a lot better at balancing everything than I was as a fresher, but it's still nice to have some dedicated physical top-up time.

Hydro

Hydrotherapy, whilst by no means the most significant of my appointments (since they're all pretty equal!), is the only one I could comfortably fit in my 'h' list. It's also the one that is most difficult for me to do elsewhere, because provision for adults is scarce. So I felt it deserved a mention - particularly because, this week, I've been able to do things in the pool that I haven't done in years. Right now they won't seem huge to most people, so I won't bore you, but I will say that I'm probably going to be swimming independently again very soon.

Heath

I'm very vocal, both in person and in writing on this blog, about my love for Hampstead Heath and how lucky I feel to live so close to it. I won't, therefore, repeat all that - but I will, as a way of breaking up this text-heavy blog post by including a picture. The smile on my face (despite the cold) hopefully sums up my relationship with this glorious green space.

Hounds

On a related note, I love nothing more than to zoom across my beloved Heath with my equally beloved dogs by my side. They are also great for snuggles, as I've written before, which brings me to my final word...

Hugs

I'm not a particularly 'huggy' person, since I can't give them very well myself and feel that other people are then getting the rough end of the deal. However, at home it's different, because my Mama knows how to make sure we both fully participate in the hug - and it's just the most comforting thing. I'm so very lucky.

And now I'm going to snuggle into bed.

Night all!

Jx

 

#WordyandWheelyWednesdays: Helping Hands

Hello my lovely readers!

This week's #WordyandWheelyWednesdays entry is comparatively short - partly because I'm tired and have a lot of work to do, but mostly because I'm writing about a smaller change that has occurred. Smaller, but no less significant. This is in an effort to take stock of just how many things are shifting for me at the moment, on all sorts of levels - because, when faced with the bigger things I've accomplished recently in terms of regaining mobility, there has been a tinge of sadness that I've been without it for so long. 

This doesn't quite make sense to me, and it doesn't sit very well with my predominant positivity (despite the fact that my therapist would probably be thrilled that I seem able to acknowledge negative emotions now without immediately suppressing them). So, in order to remind myself that it's far more fun to look forward than back, I've used the early part of this week to take stock of all the much less grandiose changes occurring, some of which have been germinating for a while.

The first of these gave rise to this post's title, and is as follows: I now have enough stability and mobility in my right hand to safely drive my chair whilst holding (empty) plates or bowls. I know this because I just tried it, in order to take my pasta bowl back to the kitchen, without disturbing Fiona from essay writing. It worked - so she'll hopefully have no idea until she reads this post!

I think I'll tackle washing up soon...! For now, though, it's back to (academic) work.

Love for tonight

Jx

#WordyandWheelyWednesdays: One-person wonder

Hello my lovely readers!

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

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

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

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

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

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

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

Love and gratitude as always 

Jx

Beginnings (copyright Jessi Parrott February 2017)