Non verbal at the poetry slam (health blog)
I wanna talk about last night. Content warning for disability, and mental health difficulties.
Last night was the Lyra Poetry Festival slam, which I had qualified for and was really excited for. The draw for the order was done in advance, so I knew going in that I was up first which took a lot of the pressure off. I was just excited to do a poem in front of Buddy Wakefield, as that was the goal when I entered… mainly because the last time Buddy Wakefield was in Bristol (at Raise the Bar) he made my friend Sanket’s dream come true by asking him to play guitar as Buddy performed a poem, but I was too nervous to even sign up for open mic in those days. So just having the goal to Do A Poem and enjoy it, meant that it was going to be an easy to enjoy event.
But as those of you who were there probably know (I told most people who tried to speak to me) when I arrived at the venue I was non verbal. And a lot of people were really thrown by that. So I wanted to talk about it here today.
People asked what happened… I actually have periods of being non verbal most days, even when I don’t leave the house all week. It’s something that has gotten worse in the past three years.
Yesterday specifically what happened was, I was hungry. I was hungry and I knew I needed to eat before the event, because the event would run late. I don’t eat breakfast or lunch, so at 4 oclock my partner and I were trying to decide what to eat. And the options overwhelmed me. I asked them to help me, but they were not able to. So I got more overwhelmed, and decided not to eat.
I went upstairs to get dressed for the event, as I had to leave my house at 5.30. But I struggled to remember all the different things I needed for all the little tasks I had to do before leaving the house. I got even more overwhelmed, and when Kasha went back downstairs, my brain shut down.
This is what my GP refers to as catatonic episodes (a psychiatrist has not confirmed that diagnosis but thats the language I use to explain it for now). I was sitting on my bed and slowly my body felt harder and harder to control (I call this ‘being heavy’ where my limbs feel hard to lift). I eventually ended up lying down (because my head becomes too heavy to hold up).
Kasha returned at this point and began our process of trying to transition out of a catatonic state. When we first got together I explained to her that when this happens I start small (wiggling my toes ala Uma Thurman in Kill Bill) and move to bigger limbs. It’s like slowly building momentum, until I have enough impetus to sit up / talk. So Kasha kept talking me through keeping moving, and trying bigger limbs. We have done this so many times that usually we can get me back to being able to communicate (either through text or sign language) within ten minutes.
Yesterday it took 45 minutes. Several times Kasha said ‘hey, don’t stop wiggling’ and I realised I had fallen asleep for a fraction of a second.
When I couldn’t leave the house for 7.5 years, when my depressive episodes were at their worst I would sleep. Because I was t total, so I had no other way of numbing the pain. So unfortunately now, my brain associates any slowness of thoughts or sadness as tiredness. So the catatonic states often make me very sleepy, and if I have no where to be I’ll often sleep for about four hours and wake up feeling much more alert (if not any happier).
I noticed, about 41 minutes in, my brain suddenly became alert again. Which isn’t normally how this works. But from the way it felt in my body I deduced that I was more disconnected than usual, so I wasn’t slowly easing out of it like I usually do. So that was weird.
Anyway, Kasha helped me get dressed and my Mum arrived to drive us to the event. So I got in the car, with my poems printed but not in my book, with my hair unbrushed, with no make up on, and I sat and watched the world out of the window for about half an hour. I was still non verbal, and couldn’t text because my fine motor skills weren’t there, so typing was extremely frustrating.
I didn’t really know at that point if I was going to go in to the event, or if I’d perform if I did. I just was too mentally burnt out from the catatonia to be able to think about those questions, so I built up to each task. Eventually forcing myself to brush my hair (which required the last co ordination) and as my hands began to be mostly well behaved, I put make up on in the car.
Cue, arriving at the venue. I haven’t been to St. George’s for about five years, so I was confused on where to go, and who I needed to talk to. My friend Sven told me I needed a ticket, so I went to the box office and managed to ask for my tickets to be printed (it would have taken much longer to type out to my family that we needed to have the tickets printed and that the information was on my phone).
I entered the main space and lots of lovely poetry pals said hello to me, I responded with my text-to-speech app (which I have for talking to Kasha in this situation) and showing them the screen “I’m sorry, I’m currently non verbal”.
And I could see the extremely sympathetic confusion in their faces.
I was here to slam. To perform a poem. To say a poem, on stage, in front of 200 people. What did I mean I was non verbal?
The truth is, this is not uncommon for me. The only thing that happened yesterday that was different (apart from the unusually long duration of the catatonic state) was that I came to the event anyway.
When I talk about being severely mentally ill, I think people only relate that to my suicidality (which I’m very public about and mention in my poems). But things are way more complicated than that. I have to juggle lots of different symptoms on an hour by hour basis. But when I am having a bad day there is only one reason why people don’t know about it. I don’t show up. People have seen me anxious, have panic attacks, have little crys, yes, but more often than people realise, I just have tickets to things and can’t make it.
And in answer to the unspoken question, how was I going to perform? I didn’t know. I had genuinely no idea. My plan was to sign in, or whatever I needed to do, and then see what happened. Try and listen to my body and my mind. My mum had already reminded me that we could leave at any time.
I work really hard to show up with a higher degree of success to things I am performing in (because I don’t want my disability to get me seen as unprofessional) by sacraficing everything else. On days when I need to perform, I don’t do anything else. I have a bath, I try to eat a meal (honestly most of the time I don’t manage to eat before a gig), and then I go to the gig. And when I’m at my worst, you don’t see it because I can’t usually physically move, let alone go outside.
But yesterday I really wanted to go. I wanted to see my friends Sven and Joelle. I wanted to perform a poem infront of Buddy Wakefield. I didn’t want to drop out and mess up Danny and Lucy’s event (and I have had to drop out of a fair few in the past).
So I came. And everyone was so full of kindness and compassion. People who remembered how anxious I used to be when I first started slamming, immediately noticed that I was not completely with it, and asked what I needed. They respected when I said I didn’t need anything. They asked if I needed them to see if I could be moved later in the slam (and I said no because I don’t think that would have been fair, but I appreciated that someone was trying to think of a dynamic solution – because I was up first – to give me more time to regain the ability to speak).
At 7.10, I managed to talk a little to some of my friends in the slammers corner. I was “giving approximations of sentences” as I like to call it (missing out non essential words). I began to think I would probably be able to do the poem. I timed my poem just reading it slowly, as that was a very real possibility that I might have to resort to. It was still under time, so I committed to competing. After all, I wasn’t expecting to win, I just came to do a poem and then relax and listen to other incredible poetry.
And in the end, thats what I did. I managed to do my poem, and not even the worst I’ve ever performed it. I was proud of myself, and I achieved what I’d set out to do that day.
The poets on the Bristol scene are used to me thanking them. Used to me being overly sentimental about everything. But thats because these people are the people who reassured me when I was my most anxious, when I started doing spoken word. They are the people who told me I would be okay. They are the people who reminded me if I needed someone to talk to / a quick exit / something brought to me, they would make it happen. And I flourished because of that support from strangers who became friends.
I don’t feel like anyone is looking for an explaination from me. People are very respectful of the fact that I am just disabled, and I will say things like ‘sorry, I had a catatonic episodes and I am still struggling to verbalise things. Can we talk after?’ and they might not understand whats happening, but they respect it and me and listen to what I need.
But I wanted to explain, for two reasons.
1) to let people know how much their support means to me. How genuinely moving it is to feel so vulnerable, and have people actively trying to instigate ways to make you feel better… I had a big cry in the toilets after I first arrived because I felt so infantilised by my brain. What kind of performance poet can’t speak? For a moment I let myself wallow in everything my disability takes from me. But it hasn’t taken my community. In fact, it often is the vehicle through which I am reminded that people love me and want me to be around / happy.
and 2) because I always like to be an example for accessibility. I am really open about struggling. But don’t talk so much (in the past few years) about how. And I think that people so easily forget that when you know a poet, and you listen to their work, and they talk about difficulties they have, you contextualise that in your mind within the parameters of the person you know. The person you see, doing a poem, or being at the bar, or having a cigarette outside gigs. That is not the whole person. And you will never know 80% of the worst stuff going on for people, because on those days, usually, they just won’t be there.
Thank you, to everyone who helped look after me (in whatever small or big ways) yesterday. I did really enjoy the event, and the poetry, and went home (exhausted but) pleased. Because for me, what better way to celebrate a poetry festival in Bristol, than having 20-odd poets in varying degrees of knowing my situation all be compassionate, kind, supportive and respectful of my disability, in a way that makes this scene inclusive to people even when they are there most vulnerable.
Not tagging anyone because I don’t want to forget anyone (after catatonic episodes I also struggle a little to remember stuff because my brain is a bit blurry for a few hours after). So if you know, you know. <3