Spaced out eerie feeling - on video

[NightBird]

I created this book trailer in an attempt to show the spaced out weirdness that is my world now:

youtube.com/watch?v=NPhYOsK...(Not working as expected?)

I don't want to keep going on about my book in here, but I thought you might find this familiar and interesting.

Lia

[Elenor3]

Brought tears to my eyes - you've obviously hit the spot Lia. Very well done......it's perfect

[Julesgettingthere]

Hello Lia, jules here,

I am really confused now.

I have just watched lots of very interesting utube videos, with your name on.

Are you an author ?

Does the connection to the animal shelter have a connection to you ?

Sorry, i can be really really slow at times.

Kind regards

Jules

x

[NightBird in reply to Julesgettingthere]

I'm slow sometimes too - don't worry about it . I'll try to explain! I've been freelancing in author services for the last few years. That's book design, covers, layout and video trailers for indie authors. I originally studied microbiology, but couldn't continue in science with my symptoms. What I do now is still tricky, but easier.

One of my long-term clients is a project called Punk Writers. They've done three anthologies so far, all raising money for an animal shelter. They rewrite classic writers in steampunk, cyberpunk and various other styles. My role fluctuates but I've laid out all the books, done one cover and all of the video trailers.

I've also been writing my own memoir, But I'm Not Depressed. That's the book the white trailer is for. It's my most difficult project yet, because my brain is so scrambled and can't make sense of words. But I have important stuff to say. People don't understand the reality of these symptoms. I'm trying to write something that communicates this weird alien world from the inside out. (And I also need to get a few barbed comments in about the awful experiences I had with therapists).

Hope that's clear!

[Julesgettingthere in reply to NightBird]

Hello Nightbird

I am really happy to read of people who have made huge strives 'despite'

like you have, what pushed you to try/know you could do the new path you are ? Was it just in you , like you didnt doubt it or was it shear determination ?

I find what you are doing absolutely fascinating (a world I know nothing about).

Did you miss your vaccine when you were a child ?

Regards

Jules

x

[NightBird in reply to Julesgettingthere]

It was more like desperation than determination, to be honest. I lost several jobs through incompetence, but couldn't get a doctor's note for my "psychological" symptoms, so went on Jobseeker's Allowance and pretended to look for jobs. Then I managed to get a GP's note and switched to ESA for a few months (same rate - £70 a week). If my dad hadn't been willing and able to take me in rent-free, I don't know where I'd have ended up. ESA ended when the morons at Atos labelled me fit for work. It was a choice between working and living off my dad, which we'd both have hated. I began by proofreading for him (he's a writer), and I gradually extended into other author-related stuff. I was spending all my time on the internet anyway, so I joined the NaNoWriMo group on Facebook. That's a project where people resolve to write a novel in November. It put me in touch with writers and I slowly acquired real (non-Dad) clients. I'm still struggling but things are a bit more hopeful now.

About the vaccine: Almost what you said. My year group were supposed to get the MMR twice in early childhood, but they switched the schedule and we got it once. They decided to make up for it by delivering a booster at university. That same week, I got measles-like symptoms (which I'd been warned about) and also the spaced-out disconnection and cognitive trouble I still have today. When I went to the doctor, they told me in no uncertain terms that there was no connection whatsoever and all they could offer was psychological treatment. I think doctors have been burned by the MMR-autism rubbish and now they won't give *any* vaccine damage a fair hearing.

Lia

[Hidden]

Hi Lia, you have captured our intrinsic awareness and blur that words simply cannot convey. The sound track (enya?) conveys the haunting feeling that surrounds me often. How are you going with the book? Seems like you have successfully reinvented yourself from exact science to excelling in creativity.😀 Claire xx

viewing our

[NightBird in reply to Hidden]

Thank you, Claire. It's not Enya, but something very like her. As this is a commercial project (well, hopefully ) I'm not allowed to use "real" songs on my trailers. But there's plenty of good licensed soundtrack music around. Plenty of crap too, but I digress.

The book itself hasn't been going that well lately. Too many client projects on my plate, and the scrambled mentality isn't great for writing. But I'm making a serious effort this month to get it together and send it to beta readers (the next stage). I set myself a publication date of January 9 - my birthday - and really want to stick with it.

Don't hold me up as a success story yet! It's still a struggle for me. I'm trying to minimise work as best I can, but nothing's really taking off. (I'm also fighting to get treatment, because my symptoms came from a vaccine and not a head trauma, so they're obviously not real. As if they know. *eyeroll*)

We carry on.

Lia

[iforget]

Lia (what a lovely name...is it your real name?...no need to answer btw) I loved the trailer and would love to read your book.

I have tried many times to "write my story" (writing was "what I did" in life part one and post BI I have moved to other areas of creativity ) and I fully understand the difficulties the process involves. I still have several early partial drafts (each around 40-53 thousand words before I gave up...but I clearly thought I had something to say LOL) and in the earlier versions I made such a good job of describing things from my perspective that it weirded out the few people who read it...and finding the balance was very hard...but if you can do it it'll be so worth it.

I really do wish you loads of luck with this...It is important stuff.

[NightBird in reply to iforget]

Thank you! I'm glad people in here are responding well to the trailer. It means I'm on the right lines

Lia is the name I chose at 14, not liking my existing one. I got a lot of "you'll change it later". Sixteen years later, and... nope. Round one to me.

Weirding people out is fine. If they're shocked, they can't be dismissive. The aim of my book is to shake readers into feeling these sensations, instead of rationalising them away like my doctors did. It won't just be memoir - there'll be some "how to get doctors to take you seriously" self-help. But the memoir is the emotional core.

Please continue with the writing if you can. We need more voices! Words are our only weapon against the systematic, dehumanising indifference that many (most?) of us are dealing with. I really enjoyed "The Ghost In My Brain", but it's a highly intellectual analysis and his symptoms were quite different. My own book is unashamedly emotive, even bitter and angry in places. It needs to be.

Perhaps you could submit something to a project I found? It's an anthology called Flooded, and the aim is to tell our stories from the inside. I can't submit a book excerpt, because she wants unique work. Reasonable enough. It's actually a paying project, which is rare as anything these days.

victoriagriffin.net/blog/fl...

There's also a literary magazine called Intima which wants submissions. No payment this time (I assume). Intima is a journal of "narrative medicine", which as far as I understand it means a branch of medicine which specialises in listening to patients and believing our stories. Bit sad that we need a new branch of medicine for something so obvious. I'll be submitting a book excerpt in the non-fiction category; they also have fiction, poetry, art and various academic/professional categories.

Thank you for the support, anyway. It means a lot.

Lia

[CuriousConnie]

I think the film captures the sense of emptiness & how surreal life often feels after brain injury. I am glad there was no nod to the anger & despair as I couldn't have watched that at the moment. xx

[NightBird in reply to CuriousConnie]

Thank you. I'm planning on creating another trailer to emphasise the anger and the warrior-survivalist mentality I've had to develop. It does seem important to mention, but I'll warn beforehand. Don't want to mess with anyone's head.

Lia

[CuriousConnie in reply to NightBird]

I agree that anger,irrationalbility & rage are generally a huge part of bi. The rage I often feel sweeps me off my feet & completely overwhelms me. Anxiety & panic are also a constant companion.

CCxx

[NightBird in reply to CuriousConnie]

I'm lucky to have missed out on that. My anger is cold and rational.

I need to vanish and do some work (distractibility is a huge part of my symptoms). But thank you for the support. I hope your day goes well.

Lia

[angelite]

Hi Lia,

Are we speaking of disconnected, unreal type feelings ?

benzo.org.uk/der.htm

Anything similar on this site ? Sorry it's under 'Psychological' but as we all know and is explained further on in the article, many brain injuries/diseases etc can all produce symptoms of a psychological type ( eg, Encephalitis, Parkinsons, Dementia etc ). x

[NightBird in reply to angelite]

Yup, that's exactly it. I have come across those terms before (and dutifully noted them in the book). I gave them a long list of symptoms in 2006 which were ignored or psychobabbled away. Depersonalisation/derealisation was among them.

"I have slipped through a translucent veil, from which I watch the fuzzy shapes of people and events. Time is elastic and sound strangely muffled. Nothing is itself any more. Objects should be neat packages but are strangely split up; shape is separate from colour, which is separate from movement. I am reminded of that Romeo and Juliet line - “misshapen chaos of well-seeming forms”. Objects have no history, shapes no connotations. Luminosity and reason have vanished."

That's from my take on it. "Psychological"... heh.

Lia

[angelite in reply to NightBird]

Traditional psychological drugs only work for some, with such symptoms caused by brain injury/disease. So the problem is how we attempt to treat or improve the quality of life for those who do not respond to the standard known medicinal/therapy approaches, isn't it ? I rather fear that either the brain will have to heal itself if possible in such cases, or the symptoms learned to be lived with. x

[NightBird in reply to angelite]

I have hope for some of the newer approaches. Neuro-optometric rehabilitation seems promising (it's the one I'm planning to try), as does "normal" cognitive rehabilitation. Even the weird one with LED lights into the brain doesn't sound impossible. They haven't yet filtered into common knowledge or acceptance, but there's a huge buzz about neuroplasticity (what they rely on) so it seems a matter of time.

In my own case, I don't want to give up yet. It's been ten years and I've been given no rehabilitation, since my symptoms were caused by a vaccine instead of a head injury. Standard medical wisdom says nothing works after two years. But with neuroplasticity - the idea that the brain can rewire itself - that cut-off point stops making sense. One way or another, I am getting rehabilitation. If my doctor won't refer me I'll get another doctor, and if they won't do it I'll buy a professional textbook and wade through the exercises myself. Headway publishes The Brain Injury Workbook, but it seems geared toward group therapy. I want an individualised strategy, and might end up spending money on a book for professionals. Serious money at that. *sigh*

There will always be some cases which simply can't get better. I just hope that once the new approaches percolate through the medical profession (and the crap ones are filtered out), there'll be less of them.

Lia

[angelite in reply to NightBird]

I'm a big fan of neuroplasticity ! I will just say that in medicine, when things accidentally go wrong/ protocol is not followed/mistakes are made scenarios, you are going to hit the brick wall of silence. I have struggled against such a wall for a long time. I wish you the very best of luck, Lia x

[NightBird in reply to angelite]

The brick wall of silence or the rubber wall of psychobabble. I'm definitely leaning towards buying a rehabilitation textbook and structuring my own course from it. Looking up what's available on the NHS, it all seems to be group therapy geared towards coming to terms with your symptoms or finding workarounds. Even if it's possible to get it, I don't need that stuff. I need a personalised program to find the gaps in my cognitive processes and fill them in.

It's going to be interesting. I'll keep you (and everyone) informed.

Lia