Daily Diary: A Blink of Hope in the Darkness

I keep thinking I'll wait until I can write something perfect. What if I just... put this out there?

It feels like every time I think I might get things onto an even keel (or some kind of keel), it all goes wrong and I end up in a pit of burnout again.

It’s the second week of semester one of the 2024–5 academic year. I’m burnt out and broken in ways I never imagined possible. This is not what I planned at all. I’d organised everything so that I’d be able to balance editing a book for a client, teaching, and then making, mending, working on mental health and trauma around writing Amnar in the background.

I didn’t bank on a major health scare coming along and trashing all of that.

This has been an education in what I can and can’t cope with, what’s too much to process, and how to ask for leniency when things get too much.

It’s also all about smear tests, so I guess it might get personal and there might be some oversharing involved.

I had a smear test in the summer. The results came back the day after I got back from the canal holiday. Terrifying terms were involved: dyskaryotes; severe; colposcopy. Effectively, the HPV they’d identified had caused a severe change in the cells of my cervix, so I’d need to have a colposcopy to confirm the smear results, with a likelihood of treatment to follow.

I’ve got a bit of a history around this. For the last eight years, I’ve had pap smears come back either clear or requiring monitoring. Colposcopies are awful. They’re a level above smears and even when they aren’t attached to “treatment”, they’re a rough ride.

This time, it looked like I was going to have to have a colposcopy to confirm the results of the smear and a LLETZ procedure to remove the affected part of the cervix.

We did that a couple of weeks ago, and I wasn’t sure whether to write or share anything around that. It was horrible. Like somebody scratching around in my body with a razor blade. All attempts to distract me from the pain and fear failed.

The nurse stopped part way through the examination and said, “You know what, I think we should probably do this under general anaesthetic.”

I was intensely relieved. If you have to go through something awful, it’s so much easier to do it when asleep.

This does mean enduring the rigmarole of preparation, pre-op assessments, and then re-arranging my life around recovery for a few days (or weeks, depending on how things go).

What I really wasn’t prepared for was that doing all of this additional stuff would add to the stress load as I started teaching. I’d set up my week so that I’d get two days per week without the need to travel, endure a lot of confusing situations, or much in the way of additional cognitive processing.

This seems to be the key to surviving as autistic in the modern world. It’s all too loud and too bright and there’s too much going on, so having days off from trying to deal with that is essential.

This is the start of semester, so it’s an intense time. I have to find all the right rooms, then introduce myself to students, start them off on their modules, etc. Getting around campus is its own nightmare, especially if you have a brain that can’t cope with all the intense lighting, movement, people, noises, signage. All the rooms are different, must be adapted to, understood.

Two extra things piled on in week one. First thing was the colposcopy and LLETZ, which happened on Tuesday and led to the decision to have the procedure under general anaesthetic. Second thing was the new attendance monitoring system at the university, meant to tackle declining attendance among students.

This is the problem with a disability like autism, too, because if things get difficult around already stressful moments, it’s easy to break.

For example, I didn’t realise I wasn’t supposed to be teaching seminars in week one on two of my courses. Monday afternoon, I went onto campus. It was bucketing down rain, I missed the bus. I was wet, cold, stressed, standing on a street corner, wishing I could go home.

Since I was coming into the semester in a rough place from the summer, this kind of pushed me toward falling apart even before the colposcopy on the Tuesday. Wednesday, for the first time in the eight years I’ve been a teacher, I had to take a sick day.

Turns out I wasn’t teaching anyway, but I didn’t find that out until Wednesday this week.

I took Wednesday off, endured Thursday, edited on Friday.

I thought having a quiet weekend would reset me, but for some reason, it didn’t. I survived teaching on Monday, but then had to do the pre-op on Tuesday. I discovered that doing something unusual and stressful, involving interactions with staff, busy waiting rooms with TVs on (why is Lorraine Kelly afraid of barrel-leg jeans?), and being weighed (ex-anorexic here; I still hate being weighed).

This took another chunk of energy I didn’t have. Wednesday was another “introductory day”, and I just about made it through. This semester, my classes for this course are on floor five of one building and floor four of another. If you read this and in you’re in the States, add another floor to your counting because both these buildings have ground floors built in.

Students everywhere, lifts cordoned off and not working, too small for the numbers crammed into them.

Plus, throughout all of this we have the new attendance monitoring system. Would you like to guess whether this system is working at all?

You’re right, it is not.

It’s working for some students but not others. It’s not working for students in random, unpredictable ways. We’re down to doing paper registers for most classes because the system doesn’t work.

Add in this nonsense. It’s week two and most of the university teaching is done by people like me. We don’t officially have access to the monitoring system without training. I only received a notification of this yesterday. I can’t attend any of the proposed training sessions because I’m teaching during this time.

Yeah.

I do, in fact, have access to the system. Probably not officially, but I do have access. Course convenors send me details. I tried to sign on for one of the two sessions I can do, but felt overwhelmed. Because yesterday I had to take a sick day. This is technically the first one because it turns out I wasn’t teaching last week, but I can’t wrap my head around that.

Based on my experience of the last couple of weeks, I’ve decided not to schedule anything on non-working days. Those days are exclusively for recovery and editing.

Also, my brain feels like this week has been going on too long as it is. Yesterday felt like it should be Friday but it wasn’t, so now I’m all over the place.

I’m relieved that the procedure is in week five, and has been organised and set up. I’ve told the course convenors on affected days I won’t be there. I’ve decided that attempting to teach the day after surgery is a fool’s errand. Finally, I’m making good choices for myself.

This is unsustainable. I love the editing I’m doing on my non-teaching days, though, and now I have a bright spark on the horizon Until I’ve got something more concrete to share, I won’t say much more, but somebody (who reads this) has given me an easier way to grow the editing work than just sticking leaflets on university noticeboards and praying for clients.

That’s the hope in the darkness: Could I make a sustainable, mostly work-from-home thing work for me that’s actually engaging and interesting?

Would that, also, help me get back into Amnar?

All I can say on that front right now is that I was planning to do a thing for six weeks, but that was back before the colposcopy happened, so now I’m not doing that. I have, however, planned out a new version of the prologue I shared a few months ago. Tiny steps, I guess.