"An open space to exist in is so incredibly vital for us all"

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Hannah’s first word was ‘cat’.

She hadn’t long turned one and she’d shout it out and point at our cats and chase them round our home.

This morning, I woke at 5am and thought I’d have time to write my newsletter. I’ve been struggling to focus lately, to put the words into sentences.

Instead, I lay stroking our beautiful, soft, kitten-sized Sally cat. 17 years old, she’s been struggling to eat for a few days now and she’s weak.

She wobbles when she walks, almost falls over, and I know it’s time.

I stroke her head for hours whilst I wait for the vet to open.

It’s quiet, just her & me and I think of all of the life that has happened in my time as her human.

All of the really beautiful parts and all of the incredibly difficult parts too. It all feels so heavy. It has felt too heavy for some time now.

Once the sun has woken, my husband gently eases her into the carrier.

I stay here. I hold Hen in their sadness. I cry.

Hannah is still softly asleep in bed. Wrapped in a pile of blankets that are keeping her warm.

I stroke her face in the exact same way I stroked Sally’s. Willing her to wake up, gently easing her into a hard day.

There’s a scattering of snow outside and I wrap my babies up warm. Hen won’t go to school.

They didn’t go to school last Tuesday either. Or Wednesday. Eight days into the January term and they’ve missed three of them.

I ignore the attendance officers phone call and delete the voice mail without listening.

I reply to their dad’s text asking why they’re not at school. Again.

I tell him about the cat.

I flick past an article about school attendance on social media and I cry.

I have this feeling, that I am failing in so many ways.

I know that is not true. But the feeling is there anyways.

I have a meeting this morning, with a friend and colleague, about our next funding bid for The Women’s Health Hub. I’m tired.

We’re meeting in a warm, cosy, garden centre cafe and I go because we need the money. Because it’s the money keeping me up at night and making me feel so exhausted.

I struggle to find my bank card in the chaos of my bag and it’s okay. It’s all okay.

We each have a coffee and I try not to cry and we discuss the bid and what words best reflect the importance of our work to the community. I’m not great at the elevator pitch yet. I’m not great at explaining, to those who make these decisions, why an open space to exist in is so incredibly vital for us all to access.

I don’t go into the lab.

I didn’t go into the lab last Wednesday either.

5 days into the January term and I’ve missed two of them.

I wonder how much easier this would all feel if I were neurotypical.

I think, actually, I’d have a secure office job and wouldn’t have been doing most of this, if I were neurotypical. If I fit into spaces like those.

It would feel easier.

I’ve been feeling this way for quite a while now.

It’s not the first time. But it is my first time since my autism diagnosis.

I’m usually quite good at stepping one day after a time through it.

One ‘needle moving action’ a day.

Maybe a bit more shouty.

Maybe a bit more blunt in my messages1.

I find it hard to know if I’m hungry or not or to know what to eat when I am.

I find it harder to feel happy for very long in the good parts.

Five of you have signed up and became paid subscribers here in the last 30 days and I am so incredibly grateful.

But there’s just a sort of flatness to everything, like that happy moment when I get the notification email doesn’t last too long.

And I find the hard bits a lot harder.

Today has felt a lot harder.

Everything just feels louder and brighter and the clothes on my body are all wrong.

I’ve never really been able to just stay in bed and get better like the people that I see on the internet.

First it was my parents telling me not to let ‘my anxiety’ define me and refusing to let me come home from university.

Then it was single motherhood, a mortgage and bills that needed paying and a job that didn’t offer sick pay.

And now it’s the responsibility of the CIC - a responsibility that I thought would be shared but is now all mine to shoulder.

I want to write something eloquent about the barriers society puts in place to stop minority or minoritised communities from supporting one another. But I honestly don’t have the energy to bring my experience back to the bigger picture in a clear way. All I can do just now is share my experience and ask you to join the dots.

I know that I am the right person to run The Women’s Health Hub. I know that I have the lived experience, the understanding, the training and the vision. I know that this work is helping people and I know that it is important.

What I don’t know is how to bring in enough money2, and we currently rely largely on funding. Funding which asks you to be ‘properly connected’ to the local community - read: attend many, many meetings. Meetings which are very long, and unpaid, and that suck the energy out of me in a way I can’t even begin to explain. Largely because they are full of white men who think they’re helping and don’t like it when you tell them they’re not. But if you don’t do these things, if you don’t show a desire to connect to every and all local community organisation and service, then you don’t get funded.

I have one day a week where I have free time and am not in the lab or parenting a toddler.

Next week alone, I have been asked to attend meetings that total eight hours of time.

Even if I had a completely empty timetable, eight hours of meetings in one week, for an autistic woman, is too much. And yet, I know that I am the right person to do this work.

So why are they making it so damn hard?

***

My husband didn’t make it to the vet.

Sally left us in her carry case on the drive there.

The ground was too frozen over and hard to dig a hole.

But she’s there now, returned to the earth.

A white hellebore marking her place.

I’m still not sure what the lesson is in all this yet.

For now, I’m eating my ‘weekly sandwich’ in the focaccia I finally managed to make this weekend, after almost a year of subscribing to .

It’s a pretty awesome sandwich.

And I’m grateful to and all of the other wonderful people I have met here, in this little safe piece of the internet. Of the world.

With love & care,