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2019-09-10 / 3:26 p.m.

It's been so long since I wrote. Close to a year. I haven't seen a doctor in five months. Everything hurts and I wonder sometimes if I'm dying. But sometimes I feel okay. I wonder if I truly am disabled. Ehlers Danlos and arachnoiditis be damed. Spinal cord damage be damned. I turned thirty. I am in my thirties. I still live in the room I grew up in. I still long to run. I'm still tired. I'm still lost. But I know how to mind my body now. I've gotten better at it. I fight for treatment and I refuse the drugs. My dogs somehow got old. Their snouts are speckled with grey. They're slow to move. They're tired. I'm trying to take back control. I'm in love, and still I miss the man that came before. Is this how it is for us all?
My friends have moved away to other counties. Other jobs. Other countries. I can't travel much so my life is a constant series of blue ticks on WhatsApp. I miss everybody but I'm so glad to be alone sometimes.
The weather is changing again. Baggy sweaters, heavy cardigans, thick tights. I am home.
I go to writing groups and I read my clumsy words aloud. I go to crafting groups and learn how to fold paper into clumsy flowers. I've started back to college part-time, in the evenings. Three hours at a time, and I can just about sit for that long. I've gained so much confidence since I was an undergrad.
I feel apologetic for not working. I tell people that I'm retired. Christ, I'm bloody disabled. Am I the only one that finds that funny?
I'm wearing a t-shirt that says "I'm pretty cool but I cry a lot". Both of those things are true. But I also laugh now more than I ever have. My body is burning and there is no cure, but I can't stop laughing. Everything's so on fire with beauty and laughter. Where did all of my negativity come from? Things were never really all bad.
When I was seventeen I tried to kill myself and instead of being institutionalised I was sent on a counselling programme. My counsellor was a South African man and I hated his gap toothed smile and the way his trousers rose up when he sat down. I hated the pictures he had framed on the walls that his kids had made. I hated that I had to be there and that it had to be with him.
His wife is in one of my writing groups and she doesn't know that I once knew her husband. He probably wouldn't even know me now. I look so different. Old friends can't tell who I am. Maybe I'll tell her about it one day. Maybe I'll write about it.
I befriended a published author and she encouraged me to write about my truth. I couldn't even write that sentence without tearing up. I feel as though my life is so unfair and yet I'm acting inappropriately. I'm not angry. I'm sad but I also can't stop laughing at myself. My hips and knees popping out of place. My inability to hold a pen. The way my brain forgets words so often. The way I have to ask "Sorry, what was I talking about?" and the way that nobody bats an eyelid anymore.
Right this very moment I feel so very motivated to not allow myself to waste away, but then the pain comes on worse for days and weeks and I don't know how I'm supposed to cope. I want my middle ground. I want my break.
I want to travel more, but driving and flying hurts so bad and sets me back for days and weeks on end. I have a best friend from Germany. I've known her half my life and I've never been to visit. She's become a famous illustrator and only a few years ago she sat deflated at my kitchen table while I convinced her that she'd be illustrating the New York Times within the year. She was. I wasn't running on blind faith. She works hard and she's just that good. Her brain fascinates me. Her talent is phenomenal. I'm proud of her and her hard work. I want to go visit her and I want to learn some of her language. She's been so kind to always communicate in mine.
I think the point is, I'm still here and I'm still erratic but I need somebody to know that maybe I'm not as miserable as I used to be.

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