The fear of getting better

Since I lost speech almost a month ago, I’ve had to put my podcast on hiatus and seriously reconsider my plans to do teacher training next year. This has put me in an employment limbo. All my main skills (podcasting, teaching, linguistics) are very much language-based, which makes it difficult to find a job when you can’t talk.

To be fair, I’ve been pretty proactive about this. I’ve started learning British Sign Language, and I’m considering the possibility of doing a distance Master’s in translation, a job which (presumably) does not require speech.

This, of course, is assuming that I never speak again, at least not consistently. In my blog post about 2021, I made some bold statements about not forcing myself to work. The thing is, those are easy things to say in theory, but in practice I still have a lot of toxic thought patterns to unlearn.

When I was a child, I absolutely hated secondary school. For most of it, I had no friends, I was bullied, and I found the whole thing sensorially overwhelming. Many times, I’d want to stay home faking being sick, or take advantage of an actual illness for as long as I could.

But my mum wasn’t the kind to tolerate that sort of thing. Unless I was hurling my guts out or paralysed in pain, I was going to school. I remember her driving me in late one day, after a dentist appointment, and me begging her to let me stay in the car. I remember her coming home in the middle of the day when I was off sick, finding me playing with some toys and saying, ‘Well, it looks like you’re well enough to go back to school.’

I’m sure she thought she was doing the right thing. But having the understanding that I do now of mental health, neurodiversity and disability, I can’t defend her behaviour. Because it was predicated on the idea of preventing laziness, a highly-dubious concept in the firstplace, but most of all, it instilled a thought process in me: if you are sick, you must be hypervigilant, and the moment you are better, get back to work, or you’re just being lazy.

A lot of autistic people struggle with judging their own stress levels already, so I don’t want to lay all the blame there. But the thought pattern still haunts me to this day.

Just this morning, while journalling, I decided to try ‘experimenting’ with my voice. See, previously when I was nonspeaking, I was still able to sing and stim. However, that seemed to have become impossible for me. But, it turns out, with extreme focus I was able to phonate vowel sounds in a shaky voice, and eventually even add consonants in to form language.

The thing is, compared to how I spoke before, it’s extremely deficient. I get stuck on pretty much every consonant, the vowels are creaky, the prosody is all off and I seem incapable of breath control. It’s like trying to play a pair of bagpipes from the inside. Technically possible, but extremely uncomfortable, tiring and inefficient. Not to mention, I would still likely fail to get a job talking like that, and many people would be unable to understand me or simply refuse to.

And yet, after that brief experimentation this morning, I fell into a spiral of fear. Oh God, does this mean I’m getting better? Does this mean I’m going to become fully verbal again? Should I try and find a speech therapist, so that they can ‘fix’ me? Should I be making more of an effort to relearn speech so I can stop being lazy?

I only spoke to myself—making sure that I was far enough away from my girlfriend for her to be able to hear my efforts—for a minute or so, but the fear has pervaded up until now, when I am writing this piece. Ironically, it has left me so worn out that the idea of forcing any more speech is simply intolerable. I imagine the ‘forcing’ part is also part of the exhaustion.

But even so, let’s say theoretically I could stutter my way through a conversation without getting too worn out afterwards. Would that mean I’m ‘lazy’?

Fuck no! Something I’m learning, in that kind of deep, embodied way, is that communication is a right and people have a right to communicate however they please. Right now, typing and sign language are far more comfortable ways for me to communicate. Therefore, I should feel no qualms about prioritising those as means of communication.

Of course, I can’t just magic away capitalism, trauma and insecurities. But at the very least, I can listen to my body. And for almost a month, my body has been telling me, ‘Even if you can talk, don’t. I don’t want to.’

It’s possible that at some point in the future I may decide to go to speech therapy and try to ‘recover’ my voice. It’s also possible that I happily live the rest of my years choosing not to speak. These things are more complicated than they seem. There is no binary switch between speaking and nonspeaking.

Since putting my podcast on hiatus, I’ve received many kind comments from listeners. But one common theme is that many of them have said, ‘Get well soon!’ or ‘I’m sure you’ll be better in no time.’

The thing is, there is no ‘getting better’. I am disabled. Not listening to my body, pushing forward as soon as I was ‘better’, was what got me here in the first place.

And maybe, for me, ‘better’ means not speaking.

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