Hospital – The Bad and The Good – med update (by sarah)

After 3 yrs I am being discharged from the Head Injury Unit for Self-Care i.e. my quality of life is good and I am showing a positive trend in improvement and just need to keep on keeping on at my own pace - I am not back to 100% functionality but still have a good chance of reaching it! Neurology stuff for the seizure thingies needs to continue for now but this is still epic news - I was discharged from the physio a while back which ironically makes my time and fatigue management a lot easier as the hospital trips are the biggest drain!

Seizure stuff is a bit of a pain in the backside still - I haven't had anything major since the miscarriage but.... still getting muscle spasms, head pain/rushing noise - it's kind of both and I have no idea how to describe it but when it's happening my muscles are twitching worse than when the tens machine used to accidentally get switched up high! I also get colour drain in one eye and wet myself etc... I don't remember them but managed to have one when Al was laying next to me - it was mild but enough to observe the symptoms properly. My jaw also clamps down and I often bit the inside of my mouth or tongue.

Supermarkets... I still struggle with these damn shops - it's like they are designed to be maximum overload or something - but I can manage a half hour or so trip now with no problems - mainly I avoid peak times and being with the kids when shopping.

I am still having to have quiet breaks in order to get through the day - I can now skip rests but not for more than two days at a time and even then that is pushing it... but my speech is so much improved when I first went to the clinic it was still pretty slurry all the time and then it would get progressively worse the tireder I got - yesterday on 2 hrs sleep I managed an entire session being articulate and even laughing at the on going issues with face blindness (made a few booboos at the poetry festival with recognising or rather not recognising people!).

Mobility is in a little dip at the moment but that is not unusual - and is due to having had a little fall/slip whilst away on holiday and then walking all the ruins and castles and follies we could find regardless. The walking stick comes and goes and also is worse when I've had a seizure thingy - because it is something I have to use for pelvic pain, fatigue and sometimes just general managing to stand upright and not just tip straight over! Most of the time I don't have to use it at all! The last factor is the only one that the head injury has added the other two pre-date it!

The NHS have been fab with this but... getting head injuries picked up and dealt with is really hard, most people end up fending for themselves and here's the thing - if I hadn't had my family around to take care of me I am not sure what would have happened too me - I see some of our local homeless people and think about what I was like and... I still struggle with money and finding my way home - it would have been very easy for me and people like me to have ended up on the streets, in a very vulnerable position - but I have my family and they have made sure I was as safe as could be - I'm pretty sure others have not been so lucky, and I don't think there are the provisions in place to help them. I was being regularly mistaken for being drunk or drugged up and that kind of makes you invisible even within the A&E departments - something which I fear will get worse as funding cuts bite.

And back to that whole truma thing - hospitals.... I find them incredibly hard places to go into - they have saved my life - they have saved my babies and allowed them to be born, there has been care and compassion - there have also been sharp needles and knives, and pain and death and blood.. lots and lots of blood - most of the time my own but not always. Hospitals are places were I have been detained, places I couldn't leave (though I assume if I'd insisted I could have left), places where I have been strapped to beds or held down so that pipes and tubes could lit be rammed into me - emergency stuff is like this and for me I have sometimes been way more aware but unable to act on things. The idea that I might go in and not come out and that this will be surrounded by pain.... is always there - hovering with the smell of cleaning fluids, over cooked food and sickness that pervades.

Little side note here - the art works that are scattered around the hospitals became incredibly important to me at such times - sometimes they are the only things I truly remember from a hospital stay.

I had two hours sleep before the appointment because I had forgotten about it and then checked my calendar and there was the appointment large and bold and... in the block where I lost the baby and every time I tried to sleep all the stuff from before rushed back, for 18 months after I had Jean I had a reoccurring dream about being held down and crucified to keep her alive - I described it too Al and he was like, "that's a memory of them taking your deep arterial blood when you went into A&E" I don't really remember that happening, I do remember blood squirting up the cubical curtains and that it was my blood and I was pregnant but I can't recall which A&E trip it was but I know there was an old man screaming. Even things like my blood transfusion at 4 yrs old decides to come and haunt me on such nights.

If I know about the appointment I can prepare myself and sort my thoughts and write or draw the stuff away so I can sleep but if that doesn't happen we get what I had this time - dreams of machines where you feel like you are buried alive.

I gave up on sleep at 1:30 am and wondered down stairs to watch documentaries about Japan - there I marvelled about little old ladies that catch venomous water snakes that are 10x worse than rattle snakes - with their bare hands, wading into dark water caves in their flip flops - they reminded me of my nans - they way they chatted and got on with things etc... though obv. my nans only had adders and badgers to contend with but I do recall how they would chatter to each other! I watched deer being bowed too and bowing back at a temple and I rode my exercise bike with it's special seat to help when my pelvis is bad and managed to get myself physically exhausted enough to sleep from 4:30 until the 6 am school run start.

One of the dangers about feeling like this is that I don't want to go to the hospitals and clinics and drs so I avoid them as much as I can and sometimes my eagerness to be discharged is not because I am better but purely because it means I won't have to go to the hospital again so soon. Like wise I tend to put off going to the drs until something is really wrong.

So yeah - there we go - good thing head injury stuff is getting there and I know how to manage various things including the truma but things.... NHS is struggling and I am incredibly lucky to have physical stuff and not a mental health issue where the waiting lists and emergency provisions have all but crumbled.

Creative Industries and Science Barriers for Dyslexics (by sarah)

This is the twitter thread I wrote this morning - I realised that I should probably blog about this as well.

As a #dyslexic creative & especially writer I use editors & proof readers for print/publications etc... but when it comes to form filling for projects I often do not find out about them with enough time to organise that & so have to send with only me editing - this looses me work.

A couple of times recently I've been turned down because of this only for them to see my work elsewhere and come back to me and say they do want me after all. Also if they've heard of me word of mouth there is no prob along with informal email convos #dyslexia

If I have informal email convos with people I tend to get the work - it is only when I am presented with great big long forms & not much time that an issue arises - sadly a lot of the work I do has this as the accepted route in even though it's not relevant to the work #Dyslexia

Of course I probably shouldn't be complaining as I do actually have a load of jobs lined up but not sure if I would have ever been able to establish myself in this world of from filling if social media hadn't made me visible in an informal way in the first place #dyslexia

So that was the thread - and it is something I have feared for a long time - it had not escaped my notice that I tended to get jobs I didn't have to fill forms in to initially get (I might have to fill forms in later on for pay and insurance etc but that was kind of after I 'd already got the job). Applications for funding, projects and events where I have to fill in forms... never got acceptances. Ah you say but you know that's wrong because I have presented at things where I needed to apply that way... yes but I had someone else either fill the form in whilst I told them my ideas or there was plenty of time and I filled it in and then sent it off to various people to be corrected.

It could be argued that this is the case for everyone filling these forms in ie Arts Council Funding is notorious for being hard to chase and the amount of form filling needed, but... for me form filling is not just a nuisance or a bit of hard work - it is exhausting and humiliating as I know I can't get it right - it doesn't matter how many times I spell check - something is going to leak through. So what am I to do if I come across a really cool thing I want to be involved in and there is like half a day before the dead line - really what am I supposed to do? There is not time to get it edited, it's going to take me all that time to write the damn thing. This leaves me with a scenario of I try anyway and will get rejected because of spelling or mucked up sentences in which case I've wasted half a day/whole day that I could have been using to do other things - other work/creative things... or I don't try.

I'm not very good at giving up or not trying - I am a little bit stubborn.

I had been trying to convince myself that everyone gets rejections all the time from this process - it is after all a filter to try and reduce the numbers of people they have to actually look at. But.... both the arts and science worlds are looking for creative innovative people and both areas rely heavily on this form filling malarky.... meaning they are effectively screening out the dyslexics and all the associated creativity and innovation that comes with them.

Next question - how do I know it's the dyslexia and not just shoddy ideas? Well a) if I have conversations, people see my work or its and informal email chain I get the work... if I have to fill forms in then I don't. b) If someone else fills the forms in for me - I get the work. and c) I've been told by several people I need to think about how I do the form filling thing in - I appreciate their honesty.

Which leads me back to the thing of what do I do? Art and Science Communication are not the most stable or well paid of industries and you need to be juggling a bazillion different jobs, possible job threads on various communication platforms including social media, emails/letters, meetings, events, the dreaded networking and still having time to design/make/deliver workshops, oh and don't forget to invoice and do your taxes - so there has been a lot of job chasing. If you stop then you end up with dead periods of time and they can play havoc with your cash flow and if you are not careful you can end up with the overworked under paid thing which always sucks. (See the book Success ...and How to Avoid it )

I personally have gone with the idea that I will fill the forms in anyway because I just need to keep trying and... quiet often what happens is people will then see me doing something else and they remember my application (probably because the spelling was so dire and they couldn't believe someone thought that was an ok thing to submit or that they were genially impressed with my ideas or a combination) and they call me into the project later on or when someone calls in sick, fails to deliver.... I am BACK UP girl - this is nice and it isn't exactly like I am currently short on work... but you have to keep juggling it all or it crashes down around you.

I am the reliable safe option and probably count as nice to steal Neil Gaiman idea form Make Good Art . To be honest I am also a bit sick of being the back up person because it makes me feel like I am not valued for the actual talents or work I do but purely because I will turn up when I say I will and also because it means I am often not in the event programme or they forget my name for the end credits or people just assume I can pull them out of tangled situation they have gotten themselves in when I might already be busy. Of course I am at the stage of being able to be grumpy about such things and to even CHOOSE what work I do.

But... this is kind of because I am already established - I am established because I happened to be on social media and blogging and able to afford a camera at the right time - that I bypassed the first phase of form filling and went straight to the being seen and asked to do stuff. That is currently a lot harder to do... and I have been in positions where I haven't been able to or have access to the resources that would allow this type of success and it sucks and I can't help thinking that if I was starting out now I would be some what screwed and join the ranks upon ranks of others who can't make due to the stupid barriers that are put in your way that don't even have any relevance to the job you are going to be doing!

Incidentally the reason I have not pursued my dream of PhD is similar - just too many accessibility issues surrounding multiple issues and being a parent.

Dream Diary – Mouse Aethelflaed (by sarah)

I dreamed of the Anglo-Saxon Queen Aethelflaed, I dreamed of her in flowing linen in bold cuts with gold glinting and shield in hand, she was a warrior, she was strong with a purposeful stride and... she was a mouse. All those historical intrigues I had fallen asleep reading about where there with Danes and Viking hoards and ancient Iron Age earthworks cracked open for battle restbite. This was a nodal saga digging deep into the mythos of my mind with mist swirling to hide armies and lands that are firm grasslands now being mires and swamps with island towns between.

But everyone was a mouse or hedgehog or otter (especially the vikings though also they were ferrets) and Gloucester Cathedral loomed into view with a statue of it's founder on a plinth except it was again a mouse - and I realised I was in Loamhedge in the books of Redwall and things made much more sense - books I read again and again. Books my dad has read to me and then to my children, books I begged the scifi library at college to get. It was all mushed together and there was a quest and it was like the stories of knights but more like the thread of the story that those glittering escapades had been threaded onto. There was something of Robin of Loxley with his hood there and something Arthurian. Dragons even slept beneath the hills.

The quest involved a cure for a plague, a plague that had laid the Roman Empire bare and had and would again sink empires in despair, two roses I had to find with my own mousy paws and little whiskered noise but not just any rose - The Sister Roses that grew at Deep Poole. I knew the place - how could I not it was a fusion of Welsh lakes I have known - one found with my husband on the flanks of the mighty hill of Snowdonia, scarred and coloured with the metals of said hill. Beautiful blues that mark its taint and the cave that is barred in the mountain wall. The other was something from childhood - a half remembered place important to my family. A place I think of even in waking as Deep Poole though I do not know what it's name is.

It is the place where my nan insisted on traveling all the way from her new home in the outskirts of London to bring her children, as part of taking them home, to her real home though it no longer really existed, a little village lost to the damp and progress of the modern world. It was hidden in the hills of South Wales - in many ways a very different land from those of Snowdonia. She took us there when ever we were in Wales with her, the waters were still and quiet cupped in an almost circle and they were dark and deep and icy and they called, whispering to you.

The lake in my dream was a combination of these two, with a weir pummelling the escaping waters into white and deadly froth. An unnaturally seeming bank rose from the lake surrounding it's dark blueness, cupped within and hiding, up on the rise over looking it was a ruin, a window so moss covered that it could have been a brick build, or tin or hewn from the very mountain side. This was a sheep grassed grass land on the steps of the mountains, trees loomed at the edge and it was all concentric circles like a labyrinth with curves and twists and somehow I knew that this was a story and that it was looping in on itself. There were desperate men there that should have been guarding the lake, instead they had been drinking holy waters and had become soul sick.

One had appointed himself king and stood taller than us with a crown glinting on his head, it was a tarnished crown and the jewels had been acid etch to a dullness, his features showed a mouse like snout but upon his back where leathery wings and in his mouth sharp incisors like a predator. He howled at us and wanted to keep us for himself but we fought him until a tin thin corroded sword pierced his belly and he fell screaming into the lake. We tried to retrieve him whilst his soldiers flittered around in unease but though he swam to avoid being pulled down into the dark heart of the lake he refused our help and was pulled into the weir where we were sure he could not survive.

He emerged retched and bleeding the other side, his wings were lost and he shivered with spasms of pain, we nestled him and cooed to him in his dying day and his people flocked around us murmuring about the Christs Blood and the Goddesses Tears and how they could save though his wings had been been ripped from his back. Without them he really was just an over sized mouse and we felt a kinship for him now that we had not before - the waters had cleansed him. One of his men told us of the boxes of remnants or possibly a drum or was it a cup? What ever it was it had been hidden by the lake and it could save him.

We told them what we sort and they shrugged, there were many flowers that grew around the lake the trick was getting to them before the sheep did. We decided to help them look for the healing box or cup that was hidden around the lake, they looked at and dug at the banks of the draining river and went onto the grey stone beach that marked the only accessible shore of the lake, we however climbed, we climbed up the grassy slope to the moss covered building. If there was some sort of healing box it might be in the building, it might just be a first aid kit.

Two types of pale pink roses grew on the window so dilapidated and sorry looking, one was a domesticated bloom, large but not overly and elegant rather than bulbous as some over bred roses can become, the other was a series of smaller blooms, little more than blossom, they were wild but you could see that at some point they had been the same as the larger flower next to them. The sister Blooms. We carefully took one of each bloom and no more - for we would not need more than that and to destroy such a thing... a glorious testament to life itself, growing on decay, the bringer of a future and somehow also the guardian of the past - it seemed an unforgivable thing.

The blooms would cure the plague so we knew they would fix the poor broken bat king and so we took them to him and he smiled and smelled their fragrance and become still... we thought he had perish and that the bats would rip us apart instead they too went still as if waiting expectantly for something. He began to murmur a story... it told of Jesus walking the lands of Albion and of a well in Bristol now hidden beneath a house, it told of miracles and knights and of an object that was divided into four, one for each corner and the foundations of the Earth, of how those objects become different things - containing the maiming iron, or the flesh for the skin, or the piercing spear or a cup of ichor and blood caught so carefully.

To keep the items safe they had each ended up in vastly different places that had been designated before the dark death, hosted by very different people but with a connection and a core that connected them. The roses were planted so as their roots would slowly consume the blood and bring the healing into the world and they were watered with the Goddesses Tears just as she filled the lake, though she was known by some local saints name now, but she was the goddess of the hills and the vallies and she kept all her kindred of the land safe within the rocks and trees. And so it was with these two clashes of culture that the Sister Roses had grown one wild and one as it had always been and both perfect and sublime.

A bird screeched and called and pierced the dream which was sweet in my mouth by now and the morning pressed in on my lids as an alarm replaced the bird, a whirl wind of child eggar to know if was a school day appeared. The book on The Warrior Queen and the local Priory sat next to my pillow and my old hedgehog toy looked at me from a shelf, a glittering stone on a faux leather thong reminds me of games pretending to be princess adventures and fearocious fairies and of course the notes I'd made on holy relics a few weeks ago lay scattered around the room, a stake of Brian Jacques books await a re-read or three and I smile thinking of the old photos in yellow reds of Welsh holidays I got developed for my family and the annual holiday me and my husband would take on the slopes of Snowdon including our honeymoon and I think - that was a strong dream and it is not going to leave me alone and though I can see where it comes from the mystic feeling of it remains and I shall share and so I have.

Rain and Ruins and Reigning (by sarah)

Found Poems of the Concrete - The Priory

The city landscape is multifaceted and layered, within this city, the one I chose as home - there is industrial wealth rotting from the victorian glory and areas of decay a few decades in the making - fixed with memories and longings and a hope that transcends it all making it ripe for a rebirth - Tudor houses stand in grandeur around 1920's colour and glaze - we choose which story to tell - there are new glass and glitz buildings calling to the business minds and all of it is beautiful overlapped and intwined.

There are the very rocks beneath - housing stories far older than this city - than this kingdom - than this land itself - within the rocks - stories telling of different landscapes. And then there is the religious blanket that settles on this region and gave it life and industry in the middle England of old. There is the Priory and the tales that it's remains have to tell.

St Oswald's.

Golden stone arches whispering of times long forgotten and a majesty of realms, calling for exploration but first there is the semi silhouette of something more modern and yet still older than many countries can claim - a building that stands sentinel as if guarding the religiocity of the region - though weather it practices the same as the foundations as they would suggest it was something else. An evolution of Faith? A changing and growing with the times and peoples and rotation of the Earth around the Sun. It is none the less a church and is full of the patience of ages with a name of mother and of guardianship St Mary's.

The sky is a leadened dead weight that sucks the colour and definition from this built and ancient landscape, ice waters threaten but there is no storm in the roll and twist of those clouds - though there is a strange glare of light that hurts the eyes if focus is attempted. The clouds seem to phase out through the stone windows as if this world and that observed world are not quiet in alinement reminding you of tricks for meditation of doors to December and cats eating themselves and strange impossibilities that contort the mind until they do indeed become possible and you think of travel between such worlds and laugh at the riduclious idea and move on.

Or rather back, stepping further and further away from the stones and the window so that more of the decaying structure is visible as for a moment it was as if the halls had become whole once more and the collapse of centuries had fallen away. The wind whispers songs that bounce of the stones and get lost in the cracks and weathering. Little ideas are hiding in the chinks - maybe one day they will be found and listened too but not this day because you are too caught up in the stone work itself, and how it forms around the windows, and how the windows are indeed more of an absence of a thing than the thing itself.

And they mark that this was once a room, once a living breathing space, where people where and thought and become nothing but bones and memories and shadows and shades that may still lurk in the cracks and dips of this ruin. Little fragments of the before can be found when you look hard enough - and up close to these old old stones that sing of the multifarious lives that they have lived, hallowed halls of Warrior Queens and monks sending the hopes of a people to the sky god and always the gentle hum of the city around you to remind you of the place in time that these relics now inhabit. Not everything is stone, more perishable things hide in plan sight.

Time seemingly flows around this place, condensing and stretching at odd intervals and you stand in the middle observing yet another window and imagining the glory of the ground it would have stared out upon and the tapestries and drapes and trappings of various ages seem to drift across your sight, a reminder of harsh climates and cold stone walls - churning memories of the places you have lived before of brick and stone and wood and block and how each of these domiciles felt. Of those that leached heat and those that retained it. Even the canvas you slept under in the garden as a child, a surplus of the second world war so heavy and thick, or thin metal that shifts and quakes in the driving rain so loud it becomes the mind. People have been living their lives for a long time in many ways and at many levels of comfort, but these halls would unlikely have allowed you to become old. The thought is a shudder of sensation as if ice has been packed into your bones and is still expanding pushing out the marrow and splitting the core of you.

And though you can feel the tragedies of the human condition piling up through the fabric of histories you feel the tug and the pull to investigate further - to fall down the rabbit whole of archaic intrigue and to explore these words that are at once the same as our own and so completely alien that they burn the minds eye if left unfiltered. Blood or no blood, and the mer slight possibility of holy relics - of a person fragmented and normally falsified - can do little to damp your curiosity and besides someone told you it was built wrong to house such things - there is an elegance here that draws you ever onward into it.

A storm churns reminding you of legends older than the building though not older than the cut blocks that make it up and certainly not older than the stone that was quarried from dead seas that hide in Cotswold Hills. But still the cycle of stories push at you, as if trying to summon thick mists like dragons breath to hide the roads and red bricked buildings that surround.

Happy Day (by sarah)

Yesterday was pretty varied - I went to Laptop Friday Gloucester which is a local business networking/co-working etc... thingy, they were setting up a great creative business workshop run by Louise Jenner, I made price tags out of colouring in sheets for my arty stuff and put it out on display in Cookes, Coffee & Curios including Wiggly Pets 🙂 I took photos of yet more funky architectural features I found in Gloucester including the guano crying Hermes from the post office and the lovely concrete moulding and mosaic stuff behind Sainsburys, I then worked on some illustrations (sorry can't share they aren't for my own stuff so aren't mine to share!) and went to find/look at books - in the Medieval times books used to be so precious that they were chained down - the book I wanted to look at about medieval stuff is out of print... so was metaphorically chained down and I was very lucky to get a look at it 🙂 Thanks to my friend 🙂 - also the books I requested had come through so I now have a little light reading to do! Then it was kids off to drama and Al making daal soup for me whilst I sorted out all the bits for my stained glass kids workshop idea (spoiler - it doesn't involve glass but did involve going to Office Outlet) <3