My journey into Mental Illness is well documented, and although I sometimes talk about my experiences as a self-confessed spoonie too, I find it one of the more difficult subjects to write about.
Firstly, if you’re unsure what I’m talking about (it’s ok, many people don’t know until they themselves or someone close to them joins the club!) then there is a reasonably comprehensive overview of the term on the Our Spoons page of this website.
My limited words about chronic pain aren’t because of shame, sadness or difficulty accepting this is where I am. The truth is I’ve been trying to swallow those truths privately for several years now. The real reason is more simple – I want to do it justice.
Like all clubs, every spoonie member has a differing level of fandom, and that means that every spoonie experience is wildly different, but by all being members of the same club we are all still (in some ways) the same. It’s complicated to put that lived-experience into words and honour your story as well as all the others out there. It’s a huge responsibility.
As a mental illness patient, I’ve had over 10 years to understand what my symptoms and diagnosis mean, and knowing what I now know I understand that I was living with undiagnosed mental illness for decades before this, it just hadn’t been addressed.
However being disabled really only because part of my journey less than 4 years ago, and it was a baptism of fire rather than the long term relationship I developed with my brains quirks. That means that my experiences are limited and my confidence talking about them isn’t always good. Getting the information across right, providing the right support services and portraying these physical limitations carefully and with respect takes a lot of time, energy and concentration. My mental illnesses make it impossible for me to get right. I end up pouring over the words for days and on several occasions a post that’s been brewing for over a month ended up on the scrap heap. What a waste of time.
Despite writing about it only on a few occasions, I talk about #chronicpain, #disability and #disabilityinclusion a lot on social media and stay on top of the new medical research on symptoms that I understand as often as possible.
A few months ago on Twitter my interests aligned and their algorithm picked up that my constant use of the hashtags #writingcommunity and #chronicpain would make me interested in a publication that deals with both – Spoonie Press.
This is a publication specifically created for and by neuro diverse, disabled and chronically ill creative people. I read the title and probably read it again 3 or 4 times. I couldn’t believe a publication like this existed, one where I nearly tick every box. This was it, I was home, I’d found my own version of creative mecca!
I sent them a message and asked if my writing would be considered, and I knew what I’d present already. I’d wanted to write about the shame I have about my wheelchair and the way that impacts my mental health for some time, but putting it here never felt right. I’d started and stopped early on several occasions, knowing that on this website it would never be read by anyone who needed it. The whole point was to be brave enough to say I was embarrassed so others would know they weren’t alone. They would never know that if the article only sat here. I just don’t have the reach needed.
When Spoonie Press told me they’d be interested in my work I finally got to write the article the way it deserved to be written. The words weren’t poured over, instead they poured out. Paragraph after paragraph of the sadness I’ve felt over the last 3 years, hours spent reliving the moments I’ve locked away knowing that now there was a chance someone might see them who understood. I still spent several days editing, re-editing and removing vast swathes of my work, but at the end my voice sounded right and I’d even managed to get a Steph-typical level of sarcasm in there too!
Incredibly, Spoonie Press isn’t just a publication talking about the cutlery drawer, they actively consider it too. For me that means that every time I make contact with them and offer to help out creatively, responses always consider if I have enough spoons available to do the work, and reminding me to take my time. For once I’m experiencing what it’s like to work with an organisation that practices what they preach, something I seem to constantly be searching for.
Thankfully, after they’d helped me with some changes, my piece was accepted and published in August 2022. I’m proud that it’s now on their ‘must read’ list. If you’d like to take a look, the article is called The Weight of my Wheelchair : Not Everyone Loves their Mobility Aid, and the artwork in the header is mine too (yes, they also accept artwork!). I’ve since submitted 3 more articles, one has been published, one is on the way and one is awaiting review. It’s really a publication for creative people who have a pringle-esque addiction to submissions. Once you pop, you really can’t stop!
In our numerous email conversations the Editor-in-Chief (and Spoonie Press founder) – Sara – mentioned that they are going to be looking for volunteers to help out with lots of things. The quality and honesty of the magazine and journal was proving popular (obviously) and she needed a bit of help. I knew I’d want to get involved in any way possible, and applied to help with everything I thought I was capable of.
Fast forward a few weeks and I’m proud to tell you I’m now officially the Spoonie Press Community Moderator for Facebook and I’m also a Staff Writer – providing at least one article a month to be published on their website with a handful of others. If you’re interested in volunteering your time too take a look at their Join The Team page.
I’m so happy to be helping this publication. Not only does their work and content include much that I understand, it’s also content that I’m truly passionate about.
When I look back 2 years and try to work out what I wanted to achieve with this website, carving out a professional future in incredibly complicated circumstances is likely what was in the back of my mind. I’m a creative person who’s never had the opportunity to be heard or seen, and even though I’ve never been more lonely, pained and isolated from the world, Spoonie Press is giving me and several other creatives the opportunity to achieve what sometimes feels impossible.
It means that my work here is starting to move forward. That my voice might be worth listening to, and that my artwork might be worth looking at. And if the Spoonie Press team believes this, one day (I hope) that someone else might too. Where will it lead? I don’t know, but I’m more productive and engaged than I’ve ever been, using my circumstances to offer help to others. Just giving them an hour or two a week gives me purpose and pride, which for me is priceless.
I entered crisis recently, something I’ll probably talk about in more detail another day, and I spoke with a crisis team member that evening on the phone. We talked for some time, probably over an hour, as she tried to calm me down and understand how I was feeling and why. Eventually we got talking about the things I enjoy and I gave her a snapshot of my study and creative exploits. She asked me ‘What makes you want to write about your experiences? It must be scary to talk openly about it.’.
My response was fairly simple…
‘I never want anyone to feel as shitty as I do, or end up as lonely as I am.’.
Spoonie Press are helping me with that project, and it’s a project that I’ll continue to undertake until I know, for certain, that something has finally changed.
The picture
Following the death of Queen Elizabeth II I found myself with more creative freedom than I usually have. I was able to think about illustrating things that I’d long forgotten because there was no pressure to keep this blog ticking over.
As a result I went back to an old love of mine – drawing flowers.
I was mainly interested in seeing if I’d improved my style and ability in the year or so since I last drew this way. I’m not sure if I’ve improved, but I liked this picture of a water lily enough to include it with this post.
In a way, the opening of the petals is a nice representation of the opening of my creativity thanks to Spoonie Press.
And they’re pretty.
Thanks for reading 💜
Creative Steph 