the panic-boats arrive in my sleep

write, she said
because something happens and words appear
write, when you don’t know how to talk
when you don’t know what to talk
write, when you don’t know why
when it doesn’t matter


i have a new hobby-habit
of checking my pulse and worrying about it
the panic-boats arrive in my sleep,
and i wonder what would happen if they didn’t arrive
would i get swept up into the dreamspace?
why can’t i get swept up into the dreamspace

it scared me, not being able to breathe like that
because no-one was here and no-one was to know
and so i monitor the situation by tracking meaningless numbers.
i want more data
i want stop and ask everyone in the street
WHAT IS YOUR PULSE RIGHT NOW
make detailed comparisons and come to a pretend-solution
when all i really need to do is stop panicking
yes, just stop panicking
(do NOT recommend me a mindfulness app, i’ll kick it in the face)
if panic is supposed to be saving me, what’s it saving me from?

why the bright? i needed rain
i needed grey

what is your pulse right now?
I’m worrying about my pulse
of all the things that i worry about
or all the actual things that actual people worry about
Actual things worth worrying about, deserving of worrying about,
I AM WORRYING ABOUT MY PULSE

what is your pulse right now?
am i worrying about my pulse or am i worrying about my pulse compared to your pulse compared to their pulse compared to –

what is your pulse right now?

it’s important, i need to know
you don’t need to know, leave your wrist alone
i need to –
stop staring at everyone’s wrists it’s creepy

how often do you check your pulse and cry because you don’t understand this wave of feeling pathetically sick when there’s nothing actually wrong with you and have to lie like a sobbing jelly in a bed when you wanted to go and exercise to help you feel better?
and it’s a good job you can’t describe what it feels like because you’d only be looking to google to tell you it’s horrendous

i’m so tired but i fear sleeping because it’s so uncomfortable when the panic-boats wake me up

apparently a low pulse rate is meant to mean you are VERY FIT
hahahahahahah look how amused the SugarClowns are at that LOOK AT THEM
(i am NOT very fit)

but what i don’t understand, about the weird floaty breathing panic-things that have been happening,
is that how can it feel like everything is going really fast,
yet instead of a fast heartrate it’s a slow one?

and so i check my pulse
and it’s low
and then i worry until it speeds up
and then i settle
and then i check my pulse
and it’s low again
and so i worry and check until it speeds up
and then i settle

(until the next anxiety-thing)

the panic-boats arrive in my sleep
slow, like an oil-puddle thick-drip soupcake
hovering out of the bodymask,
hovering still in it
air-discs slow-swirling, tight-loose pulling

the panic-boats arrive in my sleep
to warn of unsafety in dreams
perhaps they remind me to breathe

but in sleeping or waking,
there’s is no escaping –
they never allow me to leave.







KeepGoing…

Today was one of those days where you reach the end, get ready for bed (one of those anomaly days where you actually get ready for bed, instead of avoiding it completely), then realise you’ve been wearing your pants the wrong way round all day and are suddenly applauded by all of the crowds of SugarClowns that inhabit your mind. (‘whhheyyyyyyyyyyyy‘, they cheer gleefully, as if you’ve just dropped, and smashed, a glass in the school lunch hall. I begin to wonder if they knew all along, and just decided not to tell me for their own bored amusement). By ‘you’, I of course mean ‘me’, but it gets confusing as there seem to be so many ‘me’s that I forget which one I’m talking from, to and about at varying moments of the day. The bodymask is such a strange collective, the jellyghost is such an odd, over-complicated form of transport for these energy-bubbles that need to be transported throughout the multispheres.

I feel like I’ve entered a… like, if you got an inflatable oblong-shape, but it was a bit like when you blow a bubble out of bubblegum, except it would never pop, but that same stretchiness with all of the little wisp-lines – I feel like I’ve entered one of those and am just, unpeacefully chilling there for a bit. Kind of unsettled, but on the surface it’s like everything is still – morphymoving, but calm-ish – on the SURFACE. You don’t want to look at what’s on the outside of the bubble-world, even though if you tried hard enough you could notice the different hues of light trying to peer in through the stretchy bubble-wall, visible shadows in memory-colours. I wanted to make stuff, I wanted to make stuff do stuff be stuff – but I needed to help my mind and body first. and I am. but I’m just – I’m just HERE, in this space, and this THING in the back of my mind is telling me I’m not trying hard enough – when I know that I am just doing my best… and unfortunately, doing my best doesn’t mean BEING my best at any one individual thing. That is what frustrates me a lot recently. but there are so many spheres, so many marble-spheres, so many marbly marbly marble-spheres if I was my best at one of them I’d lose all of the rest… and I do lose most of the rest even by trying to do slightly well, even by trying to even attempt stuff regardless of actual progress…I WANT to push myself, and I do most days – whether that’s a day out in chaos-land or a day in bed dealing with brain-land. Just because a run wasn’t the same numbers as a previous run, it doesn’t necessarily mean it wasn’t an as-good run – sometimes it was better run – the numbers don’t always depict the full circumstance. It becomes a game of Keep Going (but then remembering to stop so that I can KeepGoing better next time). I will return.

June Jumbles (Part Two)

This is my third or fourth attempt coming back to this Draft but I’m determined to get it posted before June ends!

Hello!

I was supposed to write this in May
but May turned into June whilst I wasn’t looking

and now I’m on a different planet-sphere because that’s what happens when I leave it too long – everything shifts, it’s constantly moving

The rest of May… what happened there? I can’t really remember. I think it’s mainly been me wanting to learn how to read properly again, because I have reading to do for assignments (plus there’s stuff I want to read). It’s become difficult and I need to get better at it – I know how to read but my attention-span/focus needs improving, and an odd anxiety thing happens when I try and read books, it makes the letters go all jumbly, which is really annoying because there are so many books I really WANT to read. Things that usually helps when this happens is finding books that I can open on any page and read a small section of it, and to close it and open it again on another page. Watching things helps too, I need to make myself watch some things. as in, a film or a programme or something, not just watching things out the window or on the street.

The rest of May was also trying to deal with a load of brain things – irritating noise, irritating voices, annoying emotions. Surges of panic. I’ve been trying to get on a new routine but I’ve had to be easy and hard on myself at the same time because of the brain-things. Once those things are settled, I can work on better routine-building. and they are more settled, so I’m getting there. I did a lot of walking, which helped – walking new routes, walking along the bus route – I love that I can walk all the way down this giant straight road for a couple of hours without worrying about getting lost, following all of the familiar-number buses that are going the same way, ending up in these different areas with different things in them, looking at the bus stops along the way and finding out where the buses are all going… and then walking all the way back whilst the sky changes colour.

I’ve been back at the gym a lot, which is always the thing that helps me the most. I love it, but I wish I knew how to do more when I’m there. I was very focused on it before, but when I began making my IndoorGoblin show the hyperfocus switched to that instead and everything else just stopped because all of my energy was on the show, I didn’t know how to work anything else around that. Going back to the gym after a break was as difficult as it always is. I knew I had to get back there because eating was getting difficult again and I didn’t want that to escalate. The gym really helps me with food-related brain-voices. (“and with brain-related food voices,” says a SugarClown)

Disordered eating can take you by surprise because you think you’re doing fine and are like ‘la la la just eating this thing’ – and then all of a sudden you spit it out because a stupid non-existent creature-thing makes you, before you’ve even processed what’s going on. and then you’re like, oh, that was weird, why did I do that… and then you carry on like ‘la la la carry on eating this thing’ and then the creature is like SWALLOW THAT AND SOMEONE OVER THERE WILL DIE – and so begins the comic-strip-style fight between you and these stupid things in your head, when all you want to do is eat the sandwich, drink the drink and carry on with your day! and I laugh at it, because I do find it funny, maybe because I have to find it funny, but when I remember particular moments when it’s not been the easiest it’s suddenly not funny anymore and makes me determined not to let it escalate. ‘How much are you willing to let it escalate?‘ – that’s a thing my brain started repeating this year.

There are so many factors to disordered eating, it’s not just nutrition and body image related things, there are other things like routine and associations and voices and irrational imagination-things, supermarket-hell or ordering-food difficulty, electricity-fear leading to not being able to cook… social anxiety can make you not eat things you want to eat in public, and social anxiety can make you eat things you don’t want to eat in public too. I wonder if there are people in the world for which food doesn’t require much thinking about. Anyway, the gym really helps because I want to be better at the exercises; eating helps me to get better at the stuff, and going the gym reminds me to eat and drink – and allows me to eat. The last few weeks of gym-going I’ve been able to eat without these stupid things in my head interrupting me, which has been a relief, and I’m improving at exercising too which I find rewarding and exciting. It’s funny when I realise I am still learning to remember that eating and sleeping helps general functioning and improvement of the mind and body… it seems like such a basic human thing to understand, it almost feels like it should be an automatically-known robotly-installed thing… but I guess when I remember that if a person finds it difficult to sort out the eating and sleeping thing, it’s no surprise that all of the other factors become even harder than it already was before – and then those things in turn affect the eating and sleeping. (‘THE CYCLE OF ENTRAPMENT’, says a Sugarclown).

Talking of ENTRAPMENT… haha, no, I’m only joking, I’m so not ready to go into that yet!

It’s a constant game of balancing with my brain – like it probably is for most people, I can’t imagine how it wouldn’t be. Keeping above the surface, maintaining one bit then maintaining another bit then maintaining a different bit – I wish I knew how to maintain all of these things at the same time, like having loads of tiny builders constantly in motion – but when I look away the decorators go back to sleep, and then when the decorators wake up they REALLY wake up and want a decorating party and want to decorate for the decorating party, with shiny things and sparkly things and squidgy tubes of icing, even though the rest of the tiny builders are all either asleep, want to be asleep or really absolutely do not want to go to, have, or be any way involved in a party. More on that kind of thing another time – but for now, there are things to be done. Step one: Try and do the things. Wait – No – enough is Enough (*I’ve been kicked in the jellybody by a tumbling SugarClown*) – Step one: DO THE THINGS.

Thanks for reading, if you’re reading. (I think).

Sumita +.+

May Mumble-Rambles (Part 1)

Hello Hello! May mumble-ramble-updates! I know it’s June now but you know I’m always playing catch up with myself. The last two weeks seem like months ago! I had to work really hard to keep myself above the surface as I was a bit unwell. I find routine-change transitions really difficult, because I fully immerse myself into a thing and that thing becomes my world – so when the thing is no more, it’s really confusing to start again because nothing makes sense and it’s like a giant hand from the sky has grabbed the safety-frameworks and I am just these floating scaredy pieces of un-latchable air, shattered magnets robbed of their magnet-magic.

The last post on here was a list of things I made myself do. The day after I wrote that, I decided to write another list of things I was going to make myself do. Here is that list:

Things I will make myself do

Make myself move one suitcase full of stuff back home. because you need to accept that the thing ended and it’ll be easier to move the rest next week. (I did that! It was emotional but I’m glad I started that process)

Make myself sleep on the coach because you need to sleep. (I tried… I wanted to… I was SO TIRED… it didn’t happen)

Make myself read something I’ve been wanting to read. I’ve been struggling with reading recently but I really want to train myself to be better at it again, especially with my assignments I need to finish – so I want to find things by people who make sense, to encourage me. I’d love to spend the summer reading. I used to read a lot when I was a child but then it suddenly became difficult when I was a teenager and had never quite been the same. If it is too difficult today, I’ll make myself watch something or listen to something relevant instead. (I tried… reading was too difficult… and so was watching and listening…)

Make myself buy food and drink for tomorrow – write a list and plan it because ‘I got freaked out in the shop’ is not an excuse! (Tomorrow I’m on a 16 hour work shift so I need to bring enough food that makes it socially look like I am eating properly, unlike last time where I turned up with a packed of Pom bears, some rice cakes, a bit of dark chocolate and a giant bottle of fruit flavoured sparkling water, which I forgot to drink most of). (I didn’t go to the shop)

Make myself be in bed by 12.30. even if you can’t sleep again. Just lie there. because you have to be up at 5.15. (I didn’t… I couldn’t… but I tried)


I hate not being able to sleep when I’m really tired, but my mind gets really proccessy and shows me lots of stuff and keeps me awake. After about 4 or 5 days being unable to sleep (even with a 16 hour shift in the middle of that), I eventually managed to fall into a series of anxiety dreams… the usual subject matter – people in roofs, people invading my space, broken-into houses and cars, and different versions of doing the show, again and again and again but them going wrong (one time I did it under a giant heavy pile of cardboard pieces, I liked that version before it went wrong). Dreams are often exhausting… but when I finally got 4 hours sleep it was SO welcoming, and when the anxiety-dream-loops finally ended I even got to dream that I was a giant sleeping mozzarella in a bed, which was Amazing! It was so comfortable getting to be a giant sleeping mozzarella in a bed, it was a relief to have finally slept.

Anyway, to be confusing and to go backwards in time, here is some stuff I wrote in the middle of those days that I hadn’t managed to sleep – I think this was day 3 or 4, I can’t remember – I’m putting it here so that in the next post I can write about coming back to London and managing/maintaining wellness.

‘It’s ten past ten pm, or something close to that, as it was 22:07 the last time I looked at my locked phone screen. I stride out the door and the shadow of a nearby plant tries to grab me – a strange reminder that that sort of thing used to happen all the time and has not happened in a while. I wonder why. Am I not around plant-like creatures anymore now that I’ve rehomed myself temporarily in the city? Have I been in hiding? Then I remember that I haven’t left the room I was in for 16 hours, only leaving my seat to put a banana skin in the bin. (This is because I’ve been working at the polling station, but I can’t pretend that I wouldn’t have done this anyway had I been in my room on my own – most likely minus the banana). I suddenly remember that I have not slept properly for about 4 days… yet this is the most alive I have felt for 4 days too. I feel the opposite of dangerous to drive – like I could drive across a giant bridge into the sky like in my years-ago dreams, with my brain designing the patterns in the tiny bright tiny bright city lights. I am not in the city. I am in Swindon. It is only about 4 steps to get to my car yet all of this and so much more is in my head.

There is an old woman asleep in the back of my car but I remind myself that this is no real inconvenience. I get in the car and realise I hadn’t thought about that woman in quite some time, probably because I hadn’t been driving (I don’t drive the car in London). I remind myself that there isn’t really an old woman in the back of my car. I hurriedly tell my brain not to tell the old woman that because her vibe gets scary and I get scared myself and my illusions must co-exist in a shared reality-space especially created for us, by us. I wonder if anyone else is invited. I want so badly the possibility of somebody else to be invited. I thought I wanted to be alone, but alone, with all of this, is so alone, yet not alone – I can never be alone, I am never alone – and that is part of the problem… but more on that another time. As I drive home, I am focused – so focused – led by streams of tiny red light-dots, computer-like graphics gleaming through the evening air. My brain projects horrible unlikely visualisations of small children appearing on the roads in front of me, rolling, crushing, crying… I ensure my speed is bordering the limits, and remind myself that those things I see are irrational projections and nothing more.

I approach the house and remember the getting-out-of-the-car fear I used to experience every day. I knew the longer I sat there, the worse it would get. Also, I haven’t been to the toilet all day because I forgot and it was easier to not go. I ring the doorbell to my parents’ house and eventually run in, straight to the bathroom, shoes and bag still on. I have words pouring in through my brain, I need to type, I need to write, I need to…

I decide to make a sandwich before my bedroom disappearance and go with the instinctual urge. Food has not been easy and now I’m back here something has been restored. I begin to get swarmed by food-based questions and fight the thing that makes me want to give up on the food plan. I don’t want to highlight it, I don’t want to respond, but eventually blurt out ‘can you please stop asking me food things or I won’t want to eat anything’, or something like that. I am immediately stuck with a feeling of exposure or embarrassment, but then realise that these are my parents and I used to say stuff like that all the time – it’s not like I went into any detail and I don’t think I was impolite. I fear I was impolite, even though I know I was not impolite. I apologise for not being social and say I’ll be more social later or tomorrow. I am struck by emotion whilst preparing my sandwich, as I realise how long it’s been since I prepared a meal. Chopping a cucumber on a chopping board felt like a flashback to a lifetime ago. I realised I needed to fix my food routine – or make it existent again. I became a bit sad that I had felt unable to do that in London, but relieved I felt I could here.

I hurried up to my room to find my laptop to type on, and realised I had forgotten to bring my charger. I needed to type… to write… I grabbed the nearest notebook – this notebook. I was going to have to do this manually. It has been a long time since I’ve done this kind of writing, I didn’t know if it would happen or not. The notebook I grabbed was the one I started learning Japanese in before The Bleak. I wonder if I’ll get back to that again one day soon.’

and then I got trapped in some thought-spheres and went and played piano for most of the night ( I recorded these old songs here https://www.youtube.com/playlist?list=PL4y63Io1KyAq0YqT8N3tFZnMi4jHBq3gx )

That all seems like so so so long ago now! Part Two to follow soon!

Sumita +.+

Self-managing Rambles

Writing to myself which is now to everyone else, because for some reason I wouldn’t have done it otherwise

(Badly-written rambly stuff to make myself write)

Things I did to self-manage (I’m not saying I recommend any of them as I hated myself for most of them)

I’ve been really spacey trying to cope with a schedule transition – I find it difficult because it feels like everything suddenly changes and nothing makes sense yet everything keeps on going, which makes me feel like a sick ghost… but after a few consecutive evenings of recurring not-good-for-brain relapses of recurring behaviours, I knew I had to do something to avoid things getting worse than they need to and taking longer to turn around. These are some of the things I have been making myself do the last couple of days. I’m not recommending anything yet because it’s not been an enjoyable process, it’s just that writing this down here is actually one of the things that I’m making myself do. WHY DO I CREATE SUCH HORRIBLE PLANS

-Made myself be out all day the other day, to distract my brain. I was in the most unpeople-y mood and wanted to stay in. but I made myself walk around the park up until the evening as I knew I’d be sulking. (I was still sulking, just sulking in a park instead of in this little flat) (When I get like this, because I have an over-active imagination, my mind processes by making all the visuals super extreme and making me hear lots of stuff. It’s a process I usually have to go through but it’s not usually a process I enjoy – so I try to avoid it… but it has to happen eventually. It creeps in through dreamworlds, whether I am asleep or whether I am awake. I like to distract myself because I don’t like those things fixating on things around me that stop me doing stuff. I feel that walking around a blank park might release some of those things there instead of in a tiny flat onto my things. Walking around peopley places is annoying when I’m like this because over-active brain gets visually-chatty and says loads of stuff in my head in response to stuff I see).

-Allowed myself to stay in (how kind of me…) It wasn’t a nice experience, actually. but I didn’t want to go out either. so I stayed here the whole night and day and night. It was like having a weird lonely ball of pain in your throat and stomach which doesn’t let you do anything, but doesn’t let you sleep either.

-Made myself try to sleep. (I couldn’t… I didn’t.)

-Made myself clean/tidy… after hours of lying in bed trying and failing to sleep, my brain started repetitively saying ‘how much are you willing to let it escalate?’ over and over again, showing me flashbacks of other times I’ve been feeling unwell after a change or limbo-transition… until I couldn’t bear it any more, so I started tidying up the AbsoluteMess around me. Tidying can sometimes be a fun game but this was not enjoyable, there were helpless tears – because I kept finding stupid stuff and being like WHY AM I LIKE THIS (for example, I opened a Kinder Egg thing to remember that I had created a ‘kind-of inverted Kinder Egg’ by putting the foil in a little sphere in the middle and had broken the chocolate into teeny-tiny pieces to fit inside the orange plastic thing and then closed it and forgotten about it and just – why is this my adult life)

-Made myself shower. The glove trick definitely helped. (This might sound odd but I realised recently that wearing one rubber glove helps me be less sensory-angry when washing my hair – I think it’s because the shampoo makes my hand really dry and makes everything feel weird – but it needs to be just one glove because I need to be able to feel skin with the other hand as I’m quite dissociate-y floaty space-y and need to ground myself/remind myself that I am in my body). The familiar shower gel smells help. Annoyingly, I often do this thing where I find stuff I like near Christmas and then buy more after Christmas when it’s cheap, but I never buy enough and then it runs out and I can’t get it until the end of the year…

-Left the flat because I had to go to uni for a learning support mentor appointment thing. (THANK GOODNESS FOR THAT. The last two things wouldn’t have happened otherwise I don’t think, as I wouldn’t have needed to leave the flat. I’ve actually only recently started these sessions, because in Term 1 there was a delay with my DSA form so everything took ages to be sorted, and although I wish I’d had this from the start, I am so glad of it now… because it means I can regularly try to make sense of each week and figure things out in a way I haven’t been able to do on my own, but also is helping me to communicate those things, and think about the things I need to do in the week).

-Made myself go to The Cupboard, to begin the task of sorting my stuff out. (The Cupboard is where my stuff is from the show that I did – there is quite a lot of Stuff which I really need to get out of the way, and it was scary going to look at all the stuff because I wasn’t the one who put it all away – I had to get everything off the stage very quickly and was very lucky to have lots of people very helpfully help me, which I’m grateful for because I wouldn’t have been able to get everything tidied away in time without people helping me, and some of it must have been really annoying to clear up! However, it then makes it anxiousy for me to go and find my stuff in lots of places with no recollection of putting it in those places, and also going through all of the things brings me emotion-flashbacks which means unexpected crying outbursts BECAUSE I AM AN OVERDRAMATIC EMOTION-CREATURE)

-Made myself eat (not fun, for reasons I won’t go into right now), made myself drink. 40p for a PINT!!! (of soda water and lime)

-Made myself stay out the flat all day (and hated myself for it! but knew I needed to, to hopefully tire myself out so much that I can actually sleep. Interestingly, what happened was when it got nearer the time I would let myself to go get a bus home I actually got a bit excited for being allowed to go home – and that was a welcome hint of a feeling when I’m feeling like I do at the moment. I even found myself wanting to run, which I haven’t done in a while – this gives me hope for the start of a new routine soon…)

-Made myself walk home from the bus instead of getting another bus, for more walking… and to make myself look at the little bench that I really like looking at. When I arrived I was surprised to find it’s so much tidier here than before (as I tidied instead of sleeping) and this has helped a lot because I can see the possibility of a switch in routine (and I can also see the floor!). I’d changed the bedding on the bed and swept the floors and got rid of the rubbish and cleared the table.

-Made myself write this list out. because writing is like talking and the more I talk the more I can talk back at the brain-voices that talk to me. I think. or talk over them. or talk about them. I’m not sure, yet. I don’t yet know if it’s actually Doing anything but it felt important to attempt to write stuff out.

-Made myself open the windows. (but then allowed myself to close them all because the cars and sirens sounded SO LOUD on the road outside)

-Making myself put pyjamas on and go to bed. I don’t know if I’ll be able to sleep or if it’ll be a repeat of last night’s annoyingness.

I don’t feel ‘Better’ yet. but I think feel better than I could have been, I think. Does that make sense? I still feel the weird heavy pain-ball in my stomach and throat and body. I still feel floaty and confused and distancey-spacey-dissociatey-not-here. and on top of that now I have a giant headache from making myself be out all day and probably from not having sleep in a while. but, I’m reminding myself that some progress things happened today, like the uni session and the managing to go into the cupboard and the thinking-about-running and the tidying and I was out all day. and I’m trying to remember what I was like this time last year and just how amazing the change is from then to now. This is so much better than that in comparison – but I still have to deal with how I feel and I’m not writing this to complain, I’m writing this to try and figure it out, TO deal with it, or to try and write it away.

I’ll be away for some days which will be a change of scene, so I’m making myself write a list to leave on the table here for when I return, because that really helped me last time. What I do is I write out the days of the week that I’m coming back, and fill in things for those days, so that when I return it tells me what to do and I don’t feel as spacey. I hope I can get back into a good gym & library routine for a productive June before things get busy again.

i am lucky. i am unfinished.

I am overwhelmed by excruciating guilt of over-luck, of over-opportunity, undeserving of all I receive, undeserving to complain.

I want to DO SOMETHING. I want to expel all that was given, so I can return to soil.

I am selfish. I am disguise.

I need to Do, so I can Be, until I can Be-Not.

I am interested, fascinated, curious, inspired… an over-glamoriser under a visor, warped by disgusting zoo-cage eyes dressed up as a helper. my brain is in a cage. my brain is the cage. my brain stares upon my brain inside the cage from my brain outside the cage through the brain-cage bars, softening metal bending under gooey sugar sun.

I am over-grateful, yet constantly fear I am not grateful enough.

I want to give my self-space permission to exist. a selfish spaceman sculpting their own survival-suit… for what?

I want the option to be my entire many-selves-containing Self, AND to research and to study and be a part of a world that still seems inaccessible – now seeable, through yearning dream-glimpses, yet still not reachable enough to touch. but the space in which I am trying to be in is an in between world, neither one nor the other.

I want to make stuff, explore stuff, perform stuff, interact with people about stuff.

I want to make stuff, explore stuff, perform stuff, interact with people about stuff…

I NEED TO MAKE STUFF. write stuff. PERFORM STUFF. Be stuff. Be.

I want to make stuff, I want to make more stuff, I don’t even know if I like making stuff I think I just like having made stuff and getting to do stuff and getting to be stuff and just, all of this stuff, my stuff is everywhere, my stuff is nowhere, my stuff is not yet here…

I want to study stuff, I want to – because I WANT to. more than I potentially can. more than my ability stretches to.

I want to study stuff, as no pretender. I want to be trusted. I want to speak.

I want to share thoughts, and questions. I want to imagine questions as statements and statements as questions.

I want to be able to attend a conference and approach the people I am inspired by and tell them EVERYTHING, tell them how excited I am to be existing in the same space as them in that current moment, how the moments aligned in the most magical way – but I don’t. I remain invisibled.

I observe others occupy the moments I crave.

I choose invisibled, over-invisibled, yet crave presence. like a tiny cress alien sproutling, downwards-trapped within the floaty follicle of horizontal hope.


but I have been voiced. I have been seen. from tiny binoculars within bigger binoculars. and there are strings. and those strings connect with other strings. there is continuation of the strings. I must make continuation of the strings.

I have been lucked, I have been overlucked.

I am sickened by luck.

I must invert the process and disperse the luck.

I must plant the luck and nourish the luck and grow the luck and flower the luck and confetti the luck on those who should have had it in the first place.

I work as hard as I can, yet never hard enough.

I have been… what have I been?

I have Been.

Have I been dreaming?

I have been what I thought wasn’t possible

I have reached beyond the Do Not Touch sign, and returned with unbitten hands

I have written, I have spoken, I have sung

I am unfinished

I am untidied, I am undone

I am lucky.

I have been given an entry and I must continue to sculpt the door.

April April April, nearly May

April April April, nearly May, may it be May yet?
Well that was April – and yes fine I did quietly pretend that it wasn’t April anymore for about a week, because going online all the time with social media not-all-good autism-related stuff floating around can be energy draining, frustrating and lonely – regularly making posts and putting them onto the internet to the echo chamber of mostly myself was putting me into a cycle of ‘why-am-i-doing-this’ plus exposure anxiety so I had to take a BREAK. but I lasted about 18 days, and returned – and it was good practice because now I think I will be able to post things as and when I want without feeling so afraid because NOTHING HAPPENS – people either see stuff or they don’t, I didn’t dissolve into the ground or burst into flames for posting something about my brain, and I’ll enjoy continuing to write about things as and when I want to without pressuring myself with TheAprilChallenge.

Goodness goodness goodness what did I come here to write about

What have I been doing? The other reason I disappeared from that stuff was because I’ve not really been on the planet-sphere, I went into hibernation, I can’t remember why (I don’t think there was a reason, I think I just got into a cycle of ‘out for two days and in for the rest of the week, out for another day and in for the rest of the next week’). By hibernation I mean not leaving this little room, which apart from for necessary recharging reasons isn’t always good thing because I can spend hours and days within a small space, which is fine until I realise I should be forcing myself out to get food or air etc, but the longer I spend in, the harder it becomes to leave. Very luckily, I have been well the last couple of weeks which meant it wasn’t ‘the world is going to eat me it’s painful to leave so I’m hiding’ kind of anxiety hibernation, more so the ‘hmm yeah I’m just here, in the goblincave, time is being weird, leaving the flat is optional so I guess I’ll stay here’ kind. Oh, and then what happened was I got stuck in my latest obsession-loop, which is one of my modules for my course.

By obsession-loop, I mean I cannot stop thinking about this module, I see everything through the lens of this module – and that doesn’t mean it’s always productive, because I will get stuck on just going over and over and over a tiny thought about it in my head. I want to write about it but it’s actually really difficult because I’m only just realising that not everyone can see and feel this which feels incredibly bizarre – it’s like all this time I have sort of expected everyone to know/be experiencing the last few weeks with me, as me – but everyone has their own planet-spheres in their heads and bodies and souls, it seems weird having to explain. but if I explain here it might help me to write about it, which I have to do tonight, so here we go. For this module I’ve been making a performance piece, an IndoorGoblin one, which at the moment is a combination of music and words and scribbles and fear and I’ll be playing with string because I like playing with string. I have never made a show like this before, so although I feel like I don’t really know what I’m doing, which is so very-terrifying, it so very-exciting to explore and play and see what happens – I don’t ever want to stop making stuff; I feel like I want to be able to climb into the song-spheres/scribble-spheres/whatever-else spheres, and have others climb into them too, as opposed to just standing there playing stuff. I have been spending time in the rehearsal room most days, which is interesting because I’ve spent so much time on my own in this tiny white room and then I go there and spend so much time on my own there in a bigger black room! Hours go by so quickly there, I feel so lucky to have the space to be creative in so I am making the absolute most of it while I can… and I figured out how to get (most of) the tech stuff working on my own which is VERY exciting for me – it took me so much practice of staring at the cable-spaghetti. I never know what’s going to happen when I go in, and something always does happen, and then I change the entire show – I’m constantly nervous because I know I keep changing it, so you’d think I’d keep it the same, but I’m constantly excited because I don’t know what’s going to happen (I think I get confused between the nervous and the excited…) There is just so much stuff I want to make, so much stuff I feel I NEED to make…

Okay, to explain the extent of my obsession with making this show: one thing I get stuck doing is writing out the timings – so I decide on how I’m going to split up the 30 minutes, and I write out the sections, and the timings of each part… and then I time them again and write down the individual timings, and then write them all out in a list again, and then I count all of the individual timings and write a total. and then I count them again. and then I time them individually again, and then I write them out again, and count them, (etc etc etc). This can go on for hours, even without changing anything about it… so when I change something about it, of course I get stuck doing this all over again with different numbers – over, and over, and over.

Another thing I count is days on the calendar until the performance. I’ll look at the calendar grid, and count the squares. Then I’ll count them with my fingers looking at my fingers. Then I’ll count them with my fingers imagining a vertical list of days of the week. Then I’ll look at the booking sheet and count the days there. Then I’ll look through the days and think about what I’ll do on the days leading up to it. and then I’ll go back to the calendar-squares again and count, and repeat the process. This fills me with nervousness-excitement, a kind of fizzy alive energy that feels like it’s going to burst me into space… but it’s not a very productive use of my time, I know that – I just get stuck doing it – sometimes it calms anxiety or helps me remember the existence of time and schedules, but it’s probably unhelpful to be stuck in the cycle for hours.

When I started going in to rehearse on my own, I had to go in every day (or, night) – because I couldn’t do anything else and couldn’t stop craving being in that space (the only reason I have not been there for 3 days is because I’ve been in a forced hibernation – I went into central London for about 3 hours and it honestly drained me as much as I expected it to). I would feel like I’d be in the space for about 30 minutes but about 10 hours would fly by… even writing about this is making me feel a bit sick because I feel like I need to be there right now… it’s a weird yearning, maybe a bit like the feeling when everything’s going wrong and you miss your cat, even though you know they’re fine getting on with their own cat-life/cat-after-life. Maybe it’s because I spend so much time with just me, that I latch onto the outer-places which make me feel safe or which make me feel some sort of purpose. I think that’s normal. I feel like that room knows me, so it’s so strange it being such an open and shared public space – it’s something that can never be mine, yet it’s somewhere I can be in and feel held by it for just a little while. It’s been interesting learning to engage with a space like that and to create in the way that I create in, whilst other people are contributing to the space, and existing as the space.

Trying to continue writing this, or doing anything, whilst thinking about the fact I’m going in to play with my show in about 7 hours is a DifficultCircus, by the way.

I’m sure I had so much I wanted to put here but I can’t think about anything else other than this show, but also I can’t stop thinking about how much I can’t stop thinking about this show, it’s just – it’s like, a spinning spinny thing, like one of those – I’m imagining this merry-go-round thing I went on about 11+ years ago (haha, 11+ makes it sound like an exam), it was a rolypoly-ride – I laughed so much on it that it was painful, it had these tunnel/tube things that you sat in facing someone else and they span round like you were roly-polying, and there were loads of these things on a big disc – and then the thing would spin the other way and I don’t even know why I ended up on this thing or why it was so funny – anyway, it’s like my brain is all of those discs on one big disc and every single tunnel-tube disc is channeled into obsessing about this one, tiny, probably-insignificant-but-at-the-moment-everything-to-me show…

Thanks for joining me in this tiny-telescope-tumbleweed… Here, have some end of March to end of April photos.

Sumita +.+

Since uploading the photos I realised not only how many other things I did before this show existed (honestly, it feels like it’s been my reality for years but it’s probably only been a couple of weeks). That’s kind of why I started this whole documenting game thing – because it’s so easy to forget so much, yet so quick to trigger those things back with a picture which holds many feelings. I get so absorbed that I forget other things used to exist and that there’ll be other things after that I’ll get absorbed in. Oh – I was typing this and my laptop suddenly yet peacefully died. It’s dead. Or sleeping. Just after I uploaded and deleted loads of photos from my phone, which isn’t ideal… but the ones in this blog post had saved within the draft post which I’m now accessing on my phone… I was just sat here typing on it and it died. These things happen. Impermanence. (Hopefully fixable, though…)





Pablo: #ThinkDifferently

April is very-fast approaching, and for some autistic people this means being trapped between wanting to hide from the internet yet wanting to participate at the same time, and giving in to having a peek to observe the situation but then instantly regretting it – why is this? It’s because it’s ‘Autism Awareness’ (Autism Acceptance) week/month/TIME, which can sometimes translate to ‘BEWARE of the misinformation which often floods the internet, some of which is well-intended but which can enforce further stereotyping and doesn’t help… and I end up tangled between the game of wanting to hide in the safety-realms because of frustration, annoyances and exposure anxiety, yet also really wanting to contribute my so-far thoughts due to my interest.

(Picture from Pablo – Scaredy Cat, Season 1 Ep 20 – *Note: the added captions are my own and are in no way affiliated with the show*)

To tackle this (and to make April seem like less of a scary fish on legs), I have decided to contribute to the vast library of online autistic voices, which I’ll be doing through sharing various Pablo moments, to output some of the energy which it gave me. I know that ‘Pablo’ will have lots of things to share too, on their social media sites with their #ThinkDifferently campaign.

If you’re unaware of what ‘Pablo’ is, it is a pre-school TV show by Paper Owl Films (on CBeebies/RTEJr), featuring an autistic five and a half year old, who uses his ‘Book Animal’ friends in his art world to help him figure out difficult or confusing situations. Each Book Animal represents different parts of Pablo, and are voiced by autistic actors, who also contribute stories and story ideas to the show (one of them is me… although I don’t really call myself an ‘actor’, because I would feel like I’m acting if I did, but maybe I could try it one day…). It’s been such an honour to be involved in this show, voicing the character Wren and co-writing some stories – though it’s been so much more than the creative process and the show itself; it has had a massive personal impact on me, and while exposure anxiety has been a big barrier to me in talking about the show as much as I would have liked to, I’m ready to overcome that in order to help share the important messages behind the show, which act towards promoting autism acceptance and understanding around the world.

I feel it is possible to use communication to help people to think differently about autism, from an autistic angle – and there is not just one autistic angle, there are so many differences within the autistic neurotype collective -and within those who do not feel part of any such collective at all – one autistic voice doesn’t speak for all, but if we share our multiple individual angles then we can create some sort of hedron-sculpture knowledge base to communicate through, and people can observe autism as expressed by autistic people.

Whether autistic or not: We all think differently, we all have different perceptions – but we can find so many similarities in the way that we think (and with that, more differences) – we are the same, but different, but the same – and I think we all want understanding and acceptance in some form.

Pablo’s #ThinkDifferently social media campaign this April is all about sharing the ways in which we think, to help people to think differently about autism, and I would love it if other autistic people joined in with this online, by creating, commenting on or by sharing posts – whether there are particular things about autism you wish people thought differently about, or whether you just want to share the way that you think, I’m interested in knowing about your views.

Sumita *+*+*

Update (Part 3)

I changed my mind again (I told you – it’s the toast-and-butter thing! The toast can’t stick to the butter when the toast is on the floor! wait… no, I meant, the butter… and you might not have seen where I wrote about that in another post before this, so you might not have a clue what I’m talking about, so I’ll just skip to the bit where I tell you what you likely already knew, which is, I’m not always good at sticking to my own plans!). I was going to have separate post for New Year’s, but I don’t know why I would do that now, because it is March… MID-MARCH! (*Edit: End of March now because I took so long about this post*) – plus, I’m getting a bit impatient with the whole catch-up thing and want to start writing from NOW… so January-February-March update is going to be done in fast-forward so I can stop this past-blogging limbo game I’ve accidentally forced upon myself.

…and I just typed out a whole thing and REMOVED IT, partially because of exposure anxiety, partially because of not trying to give into the voice saying YOU HAVE TO WRITE ALL OF THIS STUFF, NOW, and mostly just because I wrote it, read it and thought ‘NOPE’. It feels strange not knowing who I am typing to, and I don’t know if this will make sense, but sometimes feel weirdly protective over my memories and experiences – like they’re going to disappear if I start talking about them, even though they’ve already happened – or that by talking about things irrational things will happen, like…. I don’t know, someone on the other side of the world drops their chocolate milkshake off a cliff, and not only do they lose their milkshake, someone else ends up having a chocolate milkshake land on their head, all because I typed a blog (I don’t know where they found a milkshake when they got to the cliff – unless they brought it with them – and I don’t know how it magically all would manage to land on one person’s head from that height, either). ANYWAY, here are some pictures… studying, gigging, scribbling, wedding-ing – there was a lot of crying, but also a lot of smiling, and gyming, and some bus-adventuring too! It took me 6 months, but I think I’m finally settled.


Update (Part 2)

I’d planned for this post to be December-January, but then I decided I wanted a separate New Year’s Eve one, so here are some end-of-November-and-December photos because we all know I am as good at sticking to my plans as butter on toast, which means sometimes I’m very good at it, and most times I’m not because the butter doesn’t land on the toast, it lands on the floor, and then I have to scoop it up like some sort of cat-child (CAT-CHILD?! I do not know why my brain said this, but it did – if there is any logic in that, I do not know what it is. Do you?)

Being in London when Christmas is approaching was weird. I felt like some sort of ghost. I think I usually do around December time, but ghost-level seems maximised when you live on your own in a big city full of humans who walk around with other humans and go for drinks with other humans and talk and laugh with other humans and – and even when you don’t want to be doing any of those things and are quite content in your overpriced iglu hiding in the quiet with a box of ice-lollies and a bowl of peas, something’s still a bit ‘should I be doing those things’ ‘why aren’t I doing those things’ ‘should I go and find some friends’ about it, even when you know very well that you DO have friends, in very many directions, and you know how difficult it is trying to find the time and the energy to meet up even when you really really want to. (I’ll tell you what I want, what I really really want, and that’s to be able to not get depressed, and to be able to type the word ‘really’ twice in a row without a hundred leopard-print Spice Girls blurring up my brain in a series of jumping-slinky-shaped badly-green-screened army-animations, like some sort of unfinished 90s glitch-trip).

The other thing about December, is that there are PEOPLE EVERYWHERE, because, Christmas – but that might also be because I actually started trying to go places which were very busy, though sometimes it was by accident. One time, for example, the tube got really busy and I didn’t want to fight my way through to the door so I stayed on the tube – but then it kept being really busy and then loads of people were getting off at Oxford Circus so I escaped with the moving crowd-shape and thought, ‘I’ll just wander about around here until it’s less busy then get back on the tube and go to the stop I was meant to get off at’ (apart from, I didn’t realise that it’s Oxford Circus and it NEVER becomes less busy so I ended up there for much longer than I intended) – anyway, I got off the tube and ended up in an AMAZING SHOP – I wasn’t entirely sure where I was at first, it felt like an exhibition space apart from it turned into a glasses shop (as in, it didn’t turn into it there and then, it always was a glasses shop, I just eventually found out where the glasses were – and they were BEAUTIFUL) I just LOVE this shop – it was totally unexpected to find it, it completely changed my day and gave me energy I didn’t know I had (I was exhausted and overwhelmed, yet the calmness and magical intrigue that being in this place gave me made my heart fizzy) – just knowing I would never have ended up there if I hadn’t not been able to get off the tube at my correct stop reminded me that feelings aren’t permanent and that unplanned moments can be joyful. I ended up visiting that shop about 5 more times in December, and once at the start of January. I like going to the same place where I felt a feeling – it reminds me of scented candles filled with the haze of memory-wisps.

Also in December, I had my first university assessment, which was a presentation. I was extremely nervous about this, as usual, but it had also turned into an obsession (I still have the poster that I made at the start of my planning). I wrote a big thing out and stared at it every single day for hours, but then all sorts of things go wrong that you can’t predict and it doesn’t help when you’re so so nervous you think you’re going to be sick every time you remember what you’re doing. My presentation was about performance of inner selves giving permission to be; I discussed my own inner worlds as well as other creative people who used characters to perform or express through. I definitely learned that I would benefit from practicing out loud, because although I whispered it to myself for hours repetitively, I discovered that speaking is VERY different to whispering! I also learned that the next time I have a presentation, I need to make myself have speaking-out-loud conversations with people in the days leading up to it, definitely the day before it – even if it’s just the night before it. I was having days of not speaking out loud and the weekend leading up to the presentation I think I had 2-3 days not leaving the flat due to intense anxiety (which then makes it harder to leave the flat, and increases anxiety, of course). I think even if I’d made myself phone someone the night before it might have helped – that’s easier said than done, especially when you factor in the anxiety I was having at the time, but I know for next time to at least try. HOWEVER, despite me feeling like EVERYTHING had gone wrong with the presentation (it turned out it hadn’t been completely disastrous like I’d thought, it was just went very differently to how I had planned, which I was Very-Not-Impressed-About), what happened directly afterwards was unexpectedly positive: the performance of my presentation had inadvertently given me permission to be; I was IndoorGoblin, Sumita and all of the rest of me, and I felt… free. (I forgot to mention I went to uni as IndoorGoblin that day – public transport with a purple face is great fun). I got to my next class and, after a whole term of making it my mission to say something every week out loud in class, even when I felt uncomfortable to do so, I suddenly felt like something else was talking through me… I was commenting on everyone’s presentations in free-form, as in, not planning out what I was going to say in my head first and forcing myself to say it… and I even gave a 5 minute totally unplanned presentation using some weetabix-shapes I drew up on a powerpoint, talking about language-communication/translation of brain things, using the model of what it’s like when my brain counts weetabix to keep me calm or to keep my brain-shapes feel organised. (It probably went better than the one I’d obsessed over for weeks – but this one wasn’t assessed!) That was my last day of term… I’ll always remember my journey through that module. It proved to me that I could be the kind of student I never thought I could be; I proved to myself that I WAS that person, when the circumstances aligned to support me to be so – even when things didn’t go like I wanted to. I wondered where the experience would take me next.

(Where it took me next, was to Read-all-of-these-papers-and-learn-how-to-write-an-essay-about-them-you-have-deadlines-in-January-and-you-need-to-do-well Land, but more about that later…)