I’ve been struggling a lot this year – a lot more than many of the years that have come before – and, of course, I naturally turned to writing and this poured out.
It’s not what I hoped to be sharing this year – neither will I be able to do the posts I wanted to do. I had many blog ideas, but that will have to wait until next year. I need to recover first; that’s the most important thing here.
After all, if you don’t put your oxygen mask on, you can’t do much and I have so many big dreams and hopes. They’ll just have to come later which is always hard for me, especially with my highly questionable self-worth!
However, I’m using them to carry me forward in the hardest moments.
I’ll be sharing smaller posts and talking a little about what I wanted to do before my mental health went so downhill, but I’ll desperately be trying to be kind to myself.
I hope you’ll offer yourself kindness too – no matter what’s happening in your life.
After all, it’s the holidays and we all deserve it; especially right now.
I feel like anyone who’s been following me this year will be dizzy from my back and forth; maybe they won’t be, but I am.
There’s been times where I’ve returned and announced that I’m, indeed, back. Then there’s been times I’ve ghosted you all for extensive amounts of time.
(I’ve been worse than a toxic partner and I’m sorry for that.)
Self-guilt holds me back.
The self-guilt that follows me about everything I do, every mistake I make, is eating this up and so I back away…
Maybe if I just don’t post – don’t try – maybe that’ll be better than failing?
Perhaps I’ll feel less like a burdening failure – as if it were ever that simple.
Now, you may be thinking “isn’t all this too serious?” and well… you’d be right if it really were as simple and uncomplicated as it seems.
Society weighs our worth by our productivity.
When you add that to the picture, it should become clearer…
Like many who can’t live up to that, it’s embedded the self-esteem of a blunt pencil into me.
My blog was one thing I could say “look what I’ve achieved” – be proud of (as much as I can be of something I’ve done, aha!) and stick one finger up at the judgement with.
Therefore, it’s hurt not to have it and the reason I haven’t hurts even more – it’s something my mind can blame me for legitimately and it likes that.
I have big ideas.
While it’s true this is a very rare available career option with my disabilities and health, I also adore writing and working to get pieces ready.
It’s something I’m really passionate about and, while it might take me longer than others, I greatly enjoy.
The truth is, I want to do this for a career and I can only do that if I don’t keep vanishing.
I have so many ideas for blog posts and articles and how I generally want this place to be. In fact, I have so many pieces written – whether finished or parts needing to be woven together.
I need to start having confidence.
One of my worst habits is writing things and not having the confidence to push them further; including to prepare them for publication.
In my drafts, I’ve written about some big topics: there’s a collection of ideas about the loneliness that comes with chronic illness; an essay on how the term “brave” is complicated with disability and all sorts of poems about mental illness, chronic illness, disability and queerness.
Don’t get me wrong, I’m as proud as I can be about them (again self-pride is… complicated) but I have niggles of doubt and, so, I don’t post them.
I tell myself I’m not “good enough.”
There’s tears in my eyes as I write this part and, at the same time, I feel stupid for it.
I was (don’t ask why I’m not still) in therapy for years, dealing with these things so I feel like I should be “over it” by now.
I know that’s far from the truth – I wonder if it’s part of my self-esteem to not think I’m doing “well enough” with that either.
No matter what, I’ve been told right from young I’m not good enough by the world at large and that definitely reflects itself in my work.
I write but I don’t post.
As I’ve always said, writing is my therapy and I’ll writeuntilthe day I can’t – even if it’s just two sentences here and a few words there.
In fact, I remember us finding an old notebook of mine and, although illegible, it showed how I’d always used writing – even before my letters looked like any alphabet.
There’s poems, stories and rants on pieces of paper from various points in my life and there’s some only god could know what they are.
Begging to be heard.
When my speech failed me (which, with speech difficulties and brain fog, was/is often), I turned to writing to get my voice heard.
Even in my medical notes, there’s a handwritten rant (with its text getting bigger and bigger due to my hand pain) from when I was 10 or 11.
It illustrates how little I felt heard and, after gaining my approval, my Mum sent it to everyone who it was appropriate to – including my school and GP.
I continue to write, I just don’t post.
Even though I don’t truly want to, I’ve just been keeping my work as drafts – even when they’re complete – because I don’t have that confidence.
I tell myself “what right do I have to discuss XYZ when there’s writers out there way better than me with much bigger voices?”
Then that becomes “I keep ghosting the platform I do have, what right do I have to talk about XYZ when I’m so bad at this?”
I need to stop this cycle.
I feel trapped and there’s only one way to break free of the cycle that locks me in chains: to fight the fears and self-criticism and just post.
It’s gonna be far from easy and there will be times I slip but I’m tired of the shackles I’m placing on myself. I’ve got so many already, I need to stop adding to them.
Of course, I don’t know how that will look like or how long it’ll take or how many setbacks there will be. But I do know that I’m determined to not let my lack of esteem keep holding me back.
As I’ve gotten older and developed as a person, my ideas for The Zebra With Rainbow Stripes have changed and developed too.
Today, I’m talking about that journey, its depths and where I’m planning to go with my blog (and beyond!).
Where it began
See, I started my blog when I was fourteen and felt like I didn’t have a voice. After five years of being near housebound, I had basically no social life or interaction with the outside world.
I had no friends my own age outside of family, I felt isolated and like I was the only person going through what I was because representation was seemingly always out of grip.
It began as a cry to be heard and seen by the world I felt invisible in. And I’m proud of that because, in a world that routinely tried to push me in a dark corner, I was still fighting to be seen and heard and respected.
At times, it felt easier to crawl into that dark corner. It felt inevitable I’d lose to it. It felt like a pointless fight I could never win.
Worse were the times it felt deserved because I was too much, too little, never simply enough.
Then, it shifted
That lonely 14-year-old screaming to be heard who believed they’d always live for others, not because they wanted to, grew up and felt a ray of sun on their face.
Step by step, I found myself (still continuing to), met friends online, felt more visible, realised it’s okay to need medication for the chemicals in my brain and relearnt what it feels like to want to live again.
I took a couple years mostly away from here. It wasn’t a choice but I’m glad I did as it gave me the space to realise who exactly I am and what I want from this life.
Without it, I fear I’d have continued trying to be who I thought I needed to be instead of just being me, in all my flawed beauty.
I wouldn’t have found my people in friends because I would have continued to hold parts of myself back and not been me.
What I want
Standing back from the blog made me realise what I wanted to post and talk about the most.
I realised it was the tricky, icky things people try to stay away from talking about or which I’ve feared judgement on.
It was all the things I felt/feel the most alone in while knowing deep down I couldn’t be.
I realised I want to build somewhere people know they’ll to find disability and/or queer representation, essays, guides, poems, recommendations, musings, videos and so much more.
A place I’d love to hang out if I was the reader and, eventually, span out with a child friendly area of The Zebra With Rainbow Stripes.
A place I’ve often needed and was never able to find.
It’s going to take time
The truth is, I have a whole lot of ideas and hopes and dreams. It’s gonna take a long time. Especially as I can only put a very small amount into achieving it.
When has that ever stopped me? For long, if at all? I’m not about to start letting it, either.
Some things might change over time, stop being so relevant, prove impossible for me to achieve.
Nevertheless, some will happen if I keep making small steps and maybe I’ll achieve things I have no idea about right now.
I’m stubborn and pig-headed
Sometimes it gets me into trouble; situations where I’m being bopped on the head with falling toilet roll and shouting for help.
But, if something to do with the moon aligning happens, it means I survive (quite literally at times). It has always taken me longer to do things but that also means that I’m more resilient.
It’s threatened by my self criticism and judgement, the way I bully and gaslight myself.
Some days I just curl up and cry.
Some days I feel worthless or like a failure.
Some days it seems as though I’ll never get anywhere because of the obstacles always in my path.
And, daily, those around me have to remind me of my worth.
But, nevertheless, my resilience is just that – resilient. Therefore, I’m sure that I’m going to achieve at least some of what I dream to. If I do things little by little then I’m sure I can accomplish little by little too.
Slotting everything together
I’ve been trying to figure out how it all slots into place like Ikea furniture. However, unlike a flat-packed table, I actually believe I have the ability to fit it all together. Even if it takes some duct tape, zip ties and WD40.
While I always loved to use them to represent the depths of a life with illness and disability, I realised that it doesn’t align with my current voice – the one I want to build – it doesn’t quite fit with its randomness.
It wasn’t that they were bad, I still love them richly, but they were for what the blog was and not what I want it to be.
So how do I piece random things – books, crafts, films, and more – into the bigger picture I envision?
Well, I’ve realised the base of everything I want to achieve is creating something that I didn’t have but needed, that my family needed while trying to navigate life where disability affected most things.
So, in my aim to create somewhere that has resources and lifts unheard voices, I want to make my rambles fit this tone.
I’m thinking lists of books with (positive) disability representation, playlists for Pride, favourite accessible apps, and reviews with disability and/or queer representation at the centre. (And more…)
Because I’m just one voice out of many but I am one voice and I’m gonna make it count like I personally want to.
Before they were digitalised, an entire trolley in the hospital would be dedicated to just my folders of notes.
My wonderful mum would request them from the hospital yearly so we could keep up with what was going on.
The hospital repeatedly “lost” notes, even after being digitalised, and withhold what they gave us for an extended period of time. Therefore, every piece we got was precious – even if it wasn’t exactly needed.
It was cathartic to shred everything we didn’t need and I felt as if I was saying goodbye to some of the hold that the hospital’s still had over me.
Recovery isn’t easy, especially when you know you’ll never get the answers to important questions like the how and why of things happening.
One day I feel mentally stronger and the next I’m a crumbling mess. But I’m making good steps forward and I’m not going to let the hard days win, as easy as it may seem sometimes.
I think the truth is, I stopped giving a toss about how people think I should be, should act, should live. When people usually talk about that, they don’t talk about the effort or time they put in to get there.
Partly, I think, that’s because it can be beyond hard to stand up and admit that it did; you want to have stopped caring without a second thought, without effort, without tears of frustration and time used.
For most of us, however, it’s not that simple. It’s not a click of the fingers and we stop caring about other people’s critiques of ourselves, it’s a long, hard process.
One where we’ll often probably doubt our ability but one where we’ll grow a heck of a lot being on and, by the end, perhaps we’ll know a lot more about who we are.
You know – the person who really exists or would do if we let it out. Not the one others or our own critical voice says we are or the one they think we should be, but the one who lives deep inside ready to be released, ready to be allowed to live and breathe and dance and frolic, begging to be unchained and let out.
So day by day, helped by my loving family and amazing girlfriend, I let that person out, I listen one less time – perhaps consciously at first – to the judgement of others and my own warped perception on my worth and the validation of the person who lives inside me.
For one, I made the difficult but beyond relieving decision to quit uni. I can’t even believe I’m writing this, I mean even two months ago, I wouldn’t have let myself make that choice.
I’d gotten so caught up in proving that I could to many of my abusers and everyone else who had doubted me just because my body doesn’t work as well as theirs. Even realising I was doing this was immensely hard because I’d convinced myself that I’d long stopped doing so.
But day by day with all these people in my life now who genuinely believe in me and with my determination to live for me – not for or despite anyoneelse – I made that hard realisation and I made a promise both to myself and all of my loved ones that I was going to stop.
It still took me time to talk myself into officially quitting but I think that time as I worked on myself and built myself up to doing what I needed and wanted added building blocks to the person I am (even slightly) proud to be becoming.
As I sat back and reevaluated my life, as much as my health lengthened this process like most others, some of what I want from my life right now and for the next few years sunk into my very bones and I’m now making a lot of steps towards these goals.
Only a few people closest to me know both what those things are and the steps but I can say how much happier and lighter I feel now.
The reality is, especially with chronic illness, you need to be completely passionate about what you’re doing because otherwise it just becomes another massive stress to add to the load and cause you more problems.
Without that passion, any knock (and believe me does chronic illness come with a lot of them) will flatten you because, simply, you won’t have the motivation to get back up and keep fighting toward the goal, past all of the consequences.
Now, even whilst I have a huge ton of things going on medically and stress wise, I look forward to the time I put towards my work; which includes being a writer in an anthology planned on release at the end of the year. (I’ll talk more about this at the time.)
I even use it to get through some of the toughest moments because I’m excited to begin and continue it. Furthermore, I am practically my own boss which allows me to have the true understanding in what I need and ability to switch off or switch on when I need.
How many other positions allow you to not work in the mornings (due to inability to function during those hours) and work at 10pm, 12pm or 3 in the morning? Others might judge but it’s the way I have to do things and I have, on that one, long been more than okay with.
The point is I’m living and for the first time in far too long I’m doing it for me, stuff what anyone else thinks. I’m not hurting anyone, I’m earning a bit, and I don’t go to bed each and every day dreading waking up the next day just to survive.
Maybe others would still see it as depressing and fully limiting but for once I’m able to smile and feel my wings fly; goodness knows they’ve been tied shut for much too long.
I frankly don’t care what others think, I am finally soaring and I know this time I won’t fall because I took my entirety – including my unpredictable complex health – into account whilst working on the foundations of my new life.
So what’s it to be, fellow sailors? Living by the expectations of others or letting you live? It’s up to you but know, despite what doubts you have, you can do this and you’ll always have a huge supporter; I’ll even make signs and banners celebrating you if you want… unless you’re a serial killer… just… don’t… don’t do that…
I used to think loving someone so much it hurts was bad. But then I learnt how it feels to go from thinking you’ll never be healthily (romantically) loved to finding your home, your safe place, your rock.
For once you treated me quite well letting life blossom just as the leaves fall sure you were ruthless too are you even capable of doing otherwise in this weird, troubled relationship between me and you? making dreams of old and new reality even long some’s hope had faded like an old photograph, restoration long overdue stained over time with troublesome liquid a decade after you began to be a foe perhaps you’re trying to set a redo it’ll never work but continue trying next year and the year after I plead one thing is for definite, so clearly true even an apology will take much work but one day maybe the hate won’t spew
Tig Ellis - The Zebra With Rainbow Stripes 