Don’t Give Up On Me – While I’m Breathing, I’m Here

And There’ll Always Be Another Story On Its Way

Five minutes ago, I shared this on my personal Facebook page and realised it would work well, with a few tweaks, as a new Substack post. A small resolution of mine is to post more. Below is self-explanatory, I hope, in why such things are difficult for me. But, dear subscribers, you are very appreciated, very valued, in a world that’s not so full of clear and obvious compassion and connection (paid subscribers standby for an extra-special thank you).

Hi everyone,

Wishing you all the best festivities in whatever form you celebrate them. I will enjoy noting the winter solstice which I believe takes place tomorrow at 9.20am. Yes, I am a nerd about these things. Thank you everyone for connecting with me, liking posts and sharing updates. They are very much appreciated, even if, as you may have noticed, I can’t respond easily if at all these days. That’s chronic illness without breaks of acute, travelling the bumpy path of my epilepsy diagnosis, ongoing seizures and complexities arising from my brain haemorrhages 16 months ago. Things are complex, and of course at times I’m dragged down into depression as I reinvent a new life with these realities, which overlap with my existing, deteriorating impairments.

Unfortunately, I find I’m confronted with less palatable interactions – overwhelmingly from people I don’t really know – who presumably act from their own position of low self-worth, and even self-hatred. Some people believe I’m rolling in riches. Some people believe I have easy answers and a perfect, peachy life. Some, thankfully fewer, people attack from a position of assumption and discrimination. I am sad for you, especially as this reflects a greater position shown by many. Forming opinions without enquiry or understanding, going on the offensive based on nothing but dark whispers created on social media and mainstream press. Sometimes I have to lay naked in order to make my point, and I really don’t want to do that, nor should I, or any marginalised individual, have to. Please don’t. If you don’t like my views, my arguments or opinions, remove yourself. If you post hate on my feeds, I will block you and report you as best I can.

To keep the record straight, I no longer type without assistance and without going through layers of assistance to produce anything, whether it is a post such as this, or a new chapter in a novel, one of my columns or a poem. I do not earn millions – or even hundreds – from my work. I am on the expected benefits, blessed by great friends, loved ones who look out for me. I have very little privilege or freedom to take for granted.

I don’t ‘work’, but I write, and for me these are interchangeable. To be a creative is what keeps me going. I’m an infamous overachiever, harder than ever these days when my physicality says no. Yet I pushed on, for instance to make many of my own festive cards. Not to show off, but because I enjoy it. The pain will come, the frustration, even a little bit of self-loathing, when things don’t work out how I dream they will. But none of that matters because I enjoy the process, and that is the key focus in my life these days.

This has turned out to be longer than I anticipated, thanks for bearing with me and for the friendship and love that I cannot always give direct gratitude for. Friendship is the other key purpose in my life, and without that I simply wouldn’t be who I am.

All I can say, once more, is thank you. Don’t give up on me. While I’m breathing, I’m here. And there’ll always be another story on its way.