The Chronically Ill and Missing Stuff (by sarah)

As anybody who has spoken to me recently will know I was looking forward to this weekend, I had the night of dangerous writing which to be fair was only a maybe as I needed to see when my practice sessions and stuff where, and the Writing Retreat.

But this week had been a bit rough but I thought I was managing it ok, and I had already had to do damage limitation and not go to my Chuffing It class. Friday I felt a bit odd but in a way that could have been nerves over doing a new show for the first time a school and the first time on my own too!

I really enjoyed the shows and the kids were great but in the car on the way home I got really sick, well not really sick but suddenly very flu-like very chronic pain flare, even my pelvis hurt. I was scrubbed out and didn't make it to Bristol. Then I spent today napping and having warm baths and stuff.

Then this evening I find that due to being out of it yesterday afternoon and evening and really and truly this morning - I'd missed the writing retreat which I was desperately trying to be well enough to go to.... tomorrow - yeah somehow I managed to get my days confused and I only found out after getting an email saying how unfair it was of me not to turn up as there was a waiting list.

This is something that happens to chronically ill people no matter how much you try, regardless of how much you make sure that you pay for things you do not go on etc... people just do not understand and one of the things that was hard to learn on the pain management course 10 odd years ago - is that you can't really expect them too either.

From their point of view you are just being awkward.

It doesn't help that now I have a extra food issues and they had gone to extra effort to cater for that.

Of course if I had known I wasn't going, I would have let them know but I didn't and I am uber hacked off that I missed it - not that I could have gone even if I had been with it enough to realise what the day was!

It's the same mechanism by which the chronically ill lose friends as people think the last minute cancellations are excuses for "I don't like you".

And annoyingly it may be flu but equally due to the arthritis symptoms resurfacing we looked at the breakfast I'd been eating this week. It turns out that some porridge contains a thing called spelt - this turns out to be a kind of wheat - it never occurred to me it would be it oat based stuff and I was only having it as the nurse had increased my calories and it's frosty icing mornings :/

The Warrior Butterfly (by sarah)

Tonight (21 st Nov 2014) I am going to be taking part in a Quiet Compare event at The Strand in Cheltenham. It is medical themed poetry so I am taking along a poem I have only ever performed twice before and never to a live audience that is sitting there just for poetry.

The poem is The Warrior Butterfly and chronicles the issues I had around the pregnancy and birth of Jean, I could write a lot on the imagery and what the poem means to me but I shall not. The two previous performances were: 1) Cheltenham Community Radio for one of their shows and 2) for the On Form Sculpture exhibition in Oxford a few years ago where I stood on an Earth work (made for the garden not an ancient burial site) that was covered in flowers and called it to the sky and the arty loving people who happened to be wandering about at the time.

It is a long and in many ways personally indulgent poem for me, not my normal but as such it is often not the right sort of thing to read at events and the actual reading of it is hard for me.

I hope local peeps might like to come out tonight to listen - it isn't just me performing a 4 and a half minute poem, there are lots of others performing too, some of whom you might even have heard of!

Anyway I'd better give it the read through a couple of times before tonight.

Here's the event details for those of you not on Facebook it is 7:30 at The Strand in Cheltenham with a £1/£2 suggested donation on the door.

The Dyslexic Author (by sarah)

This week is Dyslexia Awareness Week, it is also the begininng of an insane writing challenge called NaNoWriMo which stands for National Novel Writing Month. The idea is that you write a minimum of fifty thousand words in a month and I have been doing this challenge and a picture book sister challenge called PiBoIdMo (Picture Book Idea Month) since 2009, which is now scary long ago.

When I first started the challenge and using the forum I felt very edgy, being severely dyslexic made me hesitate to enter into online written discussions with grammarian monsters - the sort that correct friends' emails. How was I ever going to compare to such writing experts when sometimes I can't spell mine or my kids' names correctly?

Trying to belt out a novel is an amazing experience but it is also an emotionally fraught one, especially for those low on self confidence. Self confidence is a key to success - it is not the only key but it is one of the main three - Self Confidence, Endurance and Improvisation/Adaptability. Dyslexics, due to our education system and social attitudes, tend to be high on intelligence and low on that whole confidence thing. To keep going with the writing you kind of need to believe that your story is good enough, that your imagination is fantastic and that everyone is going to want to read it. Many authors go through a cycle of thinking their stuff is amazing and will win a nobel prize, to sinking into a pit of despair over how rubbish it is.

But dyslexics have an added edge of nerves, an extra question over their abilities. Not only is there the language structure issues but there is the widely held idea that if you cannot spell you cannot write. This is wrong.

And it turned out that the way NaNoWriMo works is fantastic for boosting dyslexic writers. It goes something like this - everyone is rushing to get down as many words as they can, you are encouraged to leave the typos as they are and just keep going, everyone has typos, inversions of letters, missed letter where they are just typing so fast. Normal people see these and correct them, the dyslexic brain may think that that is the correct spelling and at other times it will see it as wrong - but conversely it might see the correct spelling as wrong and correct it to something incorrect - DOH!

What this means though is that when you are sitting in a cafe or pub with a group of writers your red line squiggles are no longer an issue - everyone has them. Then there is the concept that you can edit a book with mistakes in, no matter how many mistakes there are, but if there is no book to begin with you cannot edit it into something. This frees you up to write.

One of the things I also found was that increasingly I was learning language intricacies and histories and that I could grab the grammar nazis by the proverbial and correct them if and when they started. Grammar is not a fixed thing - look at the history of writing and you find that Shakespeare couldn't spell his own name, that names themselves are pretty fluid, that grammar is just basically a mark up language to tell the reader when to breathe when talking out loud.

But can a dyslexic ever be a writer, be a published author, a journalist?

Yes, they can, and when they do they tend to be multi-genre writers, not brilliant for becoming a household name but good for writing how-to and last minute books, to be able to switch the brain from science to sports to craft, to be journalists (with patient editors!), to be non-specialist all round jacks of all trades. And, increasingly, this is becoming acceptable back in the realm of fiction, thanks to authors such as Neil Gaiman.

So where does that leave me? I have said repeatedly that I must be insane trying to be a writer whilst being very very badly dyslexic but, you know what, I wasn't - I find that being dyslexic helps with research for stories and articles, as I can't rely on words or even the grammar. I often have to use both plus the context, meaning that I can often pick up on the big or small picture, the hidden concepts and deeper meanings. It also stops me making stupid assumptions as I can't take the writing literally and if it doesn't seem right I am forced to ask, to check. For science writing this is extremely important.

Now before we go any further, dyslexia is not something I can really define; it is just a part of how my brain is wired so I will not say that my writing success is because of, nor in spite of, the dyslexia. It could have stopped me; it was a hurdle, and it has stopped many but mainly because they are told they can't do things because of it. Also, yes, I am contrary and stubborn so when people told me I could not, or that I would find stuff hard, I was determined to show them I could do it - especially when my intelligence itself was under attack.

But would my life achievements have been different without the dyslexia? I kind of think not, I just had to take a different path. And that path has been strange and winding and this last week I have found myself writing craft workshops, reading my kids poetry and stories to kids whilst dressed up in ridiculous outfits at various kid clubs, being asked to perform my page poetry at several events, asked to run writing days for adults and kids, getting sci-fi stories accepted, writing blog copy and presenting my project Cuddly Science which includes script writing and picture book writing and report writing and talk writing.

And that was just this week. This last month included articles on sci-fi/fantasy and science and crafts and gardening and grant applications, and this last year saw me become a member of the Poetry Society, British Science Fiction Association and the British Science Writers Association (and yes that does confuse me especially as there is also the British Hen Well-Fare Trust that we got the chickens from too!), I have been asked to present awards to school kids and I completed a Science Communication course - something I dismissed as a "can't" during my undergraduate degree, due to the dyslexic issues.

I now firmly place myself in the role of writer, of author and so do others. I am finally what I was told I could never be - a dyslexic author. It was not trial free and it is not yet over, it kind of will never be over and I'm ok with that.

Back to NaNoWriMo, I find myself actively encouraging dyslexics to write - to take part and I love wondering around the forums and Facebook pages and twitter seeing articles like this pop up and I love to be able to say to those who are worried, those who are struggling, don't give up, you can succeed at this. And that doesn't just go for writing, it goes for every aspect of career and life 😀

Procrastination… Good? (by sarah)

Most people think of procrastination as a bad thing. They see it as not bothering to do the work at hand or going of into a day dream etc... however recently I have found that procrastination is a good thing.

I think that some jobs actually require you to procrastinate, forcing yourself to try and think when you have gotten into a rut can be counter productive, like looking for errors in code for hours on end without a brake - you kind of become blind to what you are trying to do. You need a break - you need a mind reboot, you need to do something else.

The same is often true of the beginning of things, sometime the idea, the germ of a project is not yet ready and needs that little longer. Starting prematurely can stunt it's growth - deadlines are a problems and some of them need to be met but most of industry is actually soft deadlines which makes things easier - I myself manage much better with staggered soft deadlines than hard harsh big ones.

I see my performances and workshops and what have you as rolling deadlines - though there is stress there which I will come onto in a bit.

Back to procrastination, sometimes you need to procrastinate to re-fire the brain and sometimes it is your brain remembering something you need for your project but it can't quiet explain it too you.

For example: when I was doing my Science Communication coursework, I was desperate to include a certain concept but couldn't remember what it was called or who the lead educator was that was involved with it. In frustration I kind of gave up and in procrastinating found myself on YouTube watching Jason Silva who I find energising and stimulating (and yes he's my sort of eye candy but not that kind of stimulating honest!).

About two vids in and bam! The name I was looking for, mentioned as a throw away comment, in excitement I stumbled back and finished the work off in one sitting as it jogged my memory and the associated stuff all came flooding back in an accessible format for me - of course I am dyslexic and ADHD so this maybe a me thing but in that case it may well hold true for other like me of which there are many.

I have countless examples of stuff like this - being stuck with poetry and picking up a maths book and the words for the concepts of the numbers tumbled onto the page to make the poem that was stuck - and so on.

Then there is the stress - I am a stress bunny, I always have been and I think always will be, if I get stressed enough then meditation wont work as I'll feel stressed about wasting the time and so on. This is the point at which procrastination is kind of a saving grace. I can pass the work with reading books, watching films, knitting, painting, writing essays, going for a walk to photograph swans, having a bath, writing a song, playing the guitar, hugging the girls, tickling Alaric and so on.

Obviously most of this is only an option as I work from home/at events but it is something that has been working really well for me. It stops the nose bleeds and the burning skin that warns another out break of shingles is in the coming.

I am far more likely to make a deadline - even a hard deadline - if I procrastinate. It also works really well with the non-focus then hyper-focus thing I have and sort of bridges the gap between the two.

Now to my current stress head - I think I am being successful or the beginnings or something but this means people are now expecting stuff from me, a certain standard et... and that makes me stressed - I can't stand letting people down.

And so I was feeling too nervous and stressed to start on stuff I needed to do to sort my little play out, most of the work is done it just some admin pieces but it makes it all seem rather real and what if my stutter comes back or I am having a bad fatigue day or I'm just rubbish and it's naff and I'm being paid.... and I'm not GROWN UP enough for this.

My procrastination led me to pick up the comic book / graphic novel I got out of the library yesterday - another Neil Gaiman Sandman book. This one is called Fables and Reflections.

The first story is called Fear of Falling and as if made for the situation, it is about a play write panicking and trying to pull out of producing his play. Needless to say it was exactly what I needed.

So I am going for procrastination is good.

Comic Books, Cuddly Science and Music and More (by sarah)

So I've been a busy bee but I kind of forget to blog about stuff which is stupid as then people don't know it is happening. Anyway I have just finished writing another 50,000 words in a month as part of the summer CampNanowrimo - a variant on the Novel Writing month challenge. Everything was based in the Punk's Universe which is now epically big and pushing to get out there to the public but apart from a few flash fictions and short stories which you can read here, it simply is not yet ready!

Second there has been great progress with Cuddly Science thanks to help from Mum and there will be an unleashing of more puppets soon plus a website etc... this next month is going to be about really pushing that project forward which is really exciting 🙂 Though I have to confess Ada puppet has managed to scare a few house visitors especially when I forget to move her out of the guest room. To fully realise the vision of Cuddly Science though I now need to be looking for some external funding and also kind of finish the very last piece of my Science Communication course. For those of you who don't know Cuddly Science is a series of scientist, engineers, technologist, medicine and maths peeps in puppet form who can either run shows and/or interact with kids showing and helping them through games, experiments and sci-craft activities. Using their own stories they explain the wonderous discoveries that have been made and show just how much there is still to find out whilst giving the children a gentle taste of some actual science.

And Universe In A Box has arrived to help run Cuddly Science workshops and a few other bits which I am very pleased with 🙂 And also part of the money I spent on this fab kit will help poorer schools and things get hold of the same kit on a global scale which can only sit well with my idea of science for all 😀

I have also been working on music and have produced a song called Somebody Please which came about as I was so distressed to learn of the children from the single mother's homes that were neglected and disrespected even in death. It was a song that had to be - it isn't a happy one and it reminds us that there are still children that can be rescued - it was one of those that had to be written and also has my first ok attempt at guitar.

I think I kind of forgot to blog about the last few songs as well - so here is I'm at the Bottom of the Sea - were I attempt to play the Temple drum out friend Seth gave us.

And Little Ghost of Parade.

Then we get to the comic books, I have discovered that Gloucester Library has lots and lots of comic books and graphic novels which I think I mentioned before. Well I've started taking them out of the library rather than flicking through them whilst in situ as it were. When I was little the library in Hornchurch did not have such things and I couldn't afford them. This week I read Neverwhere which I loved but kept kind of remembering bits of it in a very specific voice. I know it is a novel as well but I think it must also be an audio book or radio show that I've heard before. Anyway I really liked it.

Hmmm amazon has a BBC series so maybe that is what I am remembering!

Anyway I have also been working on my own comic and due to feed back etc... I now have two covers and am toying with the idea of there being a black and white version and a colour version.

I also have the light core of the optronic super computer which is a mix of water colours and computer jiggery pockery which I worked out and did all by myself without asking Alaric how to install stuff etc...

I have also drawn the Punk walking - this picture looked better before I inked it in and rubbed out the pencil as the pen splodges so I need to look at materials again - maybe different pens or paper or both. But it is supposed to be a fusion of the "traditional" DC/Marvel comic book styles and the Japanese Manga and the old old cowboy comics and fantasy art stuff.

I'm still mucking about with how I'm going to colour the pictures but feel I am making great progress!

I also painted a flamingo as a last minute birthday present for Al's aunt. It was one of those wake up at five in the morning ideas - I have really only just started with the water colours but it seemed to work.

So as you can see things are busy busy especially if you add events and life in on top! But I think it's all going well - though sadly at the moment due to health stuff I'm only going to paid gigs which has made me feel like I am slightly letting people down but I can only do so much stuff at the moment 🙁

There is a lot more fun stuff I need to blog about - the girls and the chickens and what not so hopefully I'll get a chance to catch up soon!