Myasthenia and me.

The month of June is Myasthenia Awareness Month. During the month of June, the Myasthenia community comes together to raise awareness about the condition, as well as to promote research and fundraising to support individuals with Myasthenia.

As well as, for me, causing my muscles to be weaker than normal, fatigue faster, cramp and spasm, my respiratory muscles to be particularly weal, and my diaphragm to have prominent weaknesses …and of course, let’s not forget, a life threatening allergy to anesthetic my Myasthenia also causes my voice to slur when I’m particularly tired or weak making me sound drunk (I don’t even drink 🙂 ) and making it harder to swallow some food and drink.

One outward sign … because its easier to hide the muscle weakness, even with walking aids 😉 … of my Myasthenia, is my face and eye. My facial muscles are weaker on one side, so smiling is actually harder, and one eye drops.

This is called Ptosis.

Ptosis is when the upper eyelid droops over the eye. The eyelid may droop just a little, or so much that it covers the pupil (the black dot at the center of your eye that lets light in). Ptosis can limit or even completely block normal vision.

This used to really annoy me. I used to wear sunglasses everywhere; I mean I actually am really light sensitive (different part of medical complexity) but I’d never be seen without my sunglasses on my head, if not my face. Often, at work, I’d be asked if I was having a stroke by well meaning people, or if I’d been punched in the face 🙂

Now I just try to not let it bother me as much.

…some days I succeed. 🙂

This is Myasthenia.

This is me.

#myastheniagravisawareness #Myasthenia #disability #cms #mg #ptosis

News: Short story acceptance

Image showing the cover of the book entitled 666 Dark Drabbles edited by D Kershah

So woke up to a short story acceptance and exchange of contracts; had fun writing this and am looking forward to seeing it in the wild 😉

It’s going to be part of an anthology of drabble – stories which are exactly 100 words – coming out from Black Hare Press later this year called ‘666 – Dark Drabbles’ and it’s edited by D. Kershaw.

writing #flashfiction #anthology

Myasthenia Awareness

Logo showing Myasthenia charity ribbon and text saying 'June is Myasthenia Awareness Month'

The month of June is Myasthenia Awareness Month.


#Myasthenia is a neuromuscular disorder that weakens the skeletal muscles responsible for movement by impairing the connection between the nerves and muscles. 


#disability #diversity #accessibility

FEARLESS By Allen Stroud

Cover image of Fearless, by author Allen Stroud, portraying a spaceship being overlooked by a ghostly face.
●        Genre – science fiction > space opera > militaristic SF
●        ISBN hardcover – 9781787585423
●        ISBN paperback – 9781787585409
●        Pricing $24.95 (hardcover) / $14.95 (paperback)
●        Releases September 8, 2020

New novel from Chair of the British Science Fiction Association is a thrilling sci-fi page-turner with heart, centered on a paraplegic protagonist in outer space.

PRAISE: 

“The depths of outer space test the strength of a dynamic heroine’s inner resolve in Stroud’s smart, introspective space opera […] With an attention to detail that will please hard science fiction fans, Stroud raises fascinating questions about the politics of space exploration. This is one to be savored.”

Publishers Weekly (starred review)

Fearless is a brilliant achievement […] Stroud has produced a tense, atmospheric and masterfully written title with a thought-provoking and engaging plot supported by a cast of colourful and unique characters that all combine to create a thorough enjoyable experience.”

The Sci-Fi and Fantasy Reviewer

“Fast-paced, gripping hard SF with death in hard vacuum waiting at every turn.”

— Arthur C. Clarke Award winner Adrian Tchaikovsky

SYNOPSIS:

AD 2118. Humanity has colonised the Moon, Mars, Ceres and Europa. Captain Ellisa Shann commands Khidr, a search and rescue ship with a crew of twenty-five, tasked to assist the vast commercial freighters that supply the different solar system colonies.

Shann has no legs and has taken to life in zero-g partly as a result. She is a talented tactician who has a tendency to take too much on her own shoulders. Now, while on a regular six-month patrol through the solar system, Khidr picks up a distress call from the freighter Hercules…

ABOUT THE AUTHOR: 

Publicity photo of author, Allen Stroud.Allen Stroud is Chair of the British Science Fiction Association, Editor of the British Fantasy Society, and was Chair of Fantasycon 2017 and 2018. He has a Ph.D. and a Masters in Science Fiction and Fantasy world-building. Stroud has written video game novelisations such as Elite: Dangerous and Phoenix Point) and his short stories have appeared in 2001: An Odyssey in Words and 2017 Year’s Best Military & Adventure SF. 

FLAME TREE PRESS is an imprint of Flame Tree Publishing dedicated to Logo of Flame Tree Pressfull-length original fiction in the horror, science fiction & fantasy, and crime/mystery/thriller categories. Launched in 2018 the list brings together brilliant new authors and the more established; the award winners, and exciting, original voices. Learn more about Flame Tree Press at www.flametreepress.com and connect on social media @FlameTreePress

PUBLICITY CONTACT Sarah Miniaci / sarah.miniaci@smithpublicity.com / 856.489.8654 x329

 

Announcement: writing for ‘Katanas and Trenchcoats’ #kickstarter

3a3aa628d131397e923055e6ff6ffab9_originalOk, I’ve been given permission from Ryan Macklin, the head honcho behind the project, to talk about the secret contract thing I’d signed earlier in the week …I’m officially writing for an AWESOME role-playing game called ‘Katanas and Trenchcoats’ which is currently being Kickstarted at the moment, but broke its funding goal in less than 24 hours of launch and there’s still another 20 days to go! For a life long gaming nerd like me, who now writes, this is definitely part of living the dream #achievementunlocked 🙂

You can find out more about the project at the link below.

Twice as hard – Rare Disease Day 2016

logo-rare-disease-day“I do not think there is any other quality so essential to success of any kind as the quality of perseverance. It overcomes almost everything, even nature.” John D. Rockefeller

– – – – –

I was really only diagnosed with having a rare disease, the first time, because of a pretty bad hospital experience.

My walking had been getting progressively worse, over a few years, mostly down to foreshortened / ‘tethered’ Achilles tendons. Simply put while the rest of me was growing at one speed my tendons either stopped growing, or became tangled up. Either way I was forced to walk on my toes, getting progressively higher and higher, as time went on.

Physiotherapy was tried, as was corrective shoes and splints, but nothing worked. My tendons were simply too short/tight to be fixed by anything short of surgery. So in late June I went into Musgrave Park Hospital, in Northern Ireland, where a top-class orthopaedic surgeon repaired my tendons … one part lengthening, one part additional material.

I woke up a few days later in ICU so don’t actually recall what happened personally; my mother does, unfortunately. It wasn’t a great experience as I reacted badly – very badly – to the anaesthetic and, due to malignant hyperpyrexia, pretty much died a little. Now, in most works of fiction, that would be enough to put a protagonist through, wouldn’t it?

Well, unfortunately for me, this was my real life and not a story.

I spent a few weeks in heavy plaster, both legs from the toes all the way up to above the knees. After that I had the heavy plaster casts removed and slightly lighter casts put on – again, both legs, up to the knees. Finally I had a fibre glass type cast put on (yes, both legs, up to the knees) but this time they had little plastic/rubber things on the bottom so that I could walk on them.

Only, I couldn’t.

Keep in mind that for about 6-8 weeks I had been in a hospital bed, ankles/legs still recovering from pretty major surgery, and with casts on that were very heavy. I hadn’t been mobile in the slightest so it came as a bit of a shock – for me, my family and the medical staff – to find out that I couldn’t move my legs.

I could feel my legs, though the sensation was muted, but I couldn’t lift them, move them or bear weight on them. Now, obviously, this was a few years ago now (24 ish) so all the details aren’t exactly clear but there doesn’t seem to have been too much of a worry at that point. I’d been in hospital for a couple of months, bed-ridden for the first two weeks, then in a wheel-chair thereafter … I’d even been allowed home for a weekend, at some point – this is very well remembered as I had to have a lot of help doing anything and my mum, bless her, pulled both legs out of bed at the same time and the weight of them propelled the rest of me out of bed, head over heesl, to the floor. I’d love to say that we laughed but, we didn’t; SHE did. For quite a long time as I recall!

Anyway it was only when the plaster casts were finally taken off that the extent of the trouble became obvious. My legs were obviously always going to be weak. They’d been constrained in one position for a long time. The fact that I still couldn’t make them move – the fact that my sensation was still negligible – and, most importantly, the fact that automatic reflexes (to pain and stimulus) didn’t do much at all suddenly brought home the fact that I couldn’t move. I couldn’t walk. My legs simply wouldn’t work at all.

Now this was rather worrying (that may sound like an understatement but bear in mind I’m British, with a military background, and you’ll see that ‘stiff upper lip’ is a well known medical condition too ;) ) and for a longish time I went through a LOT of testing and other medical stuff:

– I was fitted for plastic splints – full and half leg ones – that I would end up wearing for many, many months.
– I had nerve conduction tests, MRIs, x-rays, lumbar punctures and other things that I don’t recall.
– I was put through a really intensive regime of physiotherapy, hydrotherapy and rehabilitation.
– I was taught how to use a wheelchair and integrated into a community of other users – spinal injuries, amputates, etc. I actually have a trophy, somewhere, for winning a wheelchair-bowling tournament. :)

Over time I managed to get some limited movement and control back in my legs and was then transferred to different walking frames – starting with a contraption that I was strapped into from my chest down which basically supported all of me, then a full body walking frame, then a zimmer frame, etc.

Eventually I managed to take a few steps around the ward on my own, just on crutches. This was December 18th and a week later, December 24th a war of words took place between myself, my family and the medical staff and I was discharged – over six months after I had first gone in for a ‘routine’ operation.

Unfortunately, as we found out, nothing is ever routine when a rare disease is involved. My genetic quirks meant that I reacted badly to the anaesthetic and, ultimately, my muscles didn’t recover from it, the reaction itself, or the surgery, the way that they should have.

Six months in hospital, with a period of time wondering if you will ever walk again and getting used to using a wheel chair, is definitely not routine. However, getting OUT of the wheelchair and, eventually, making a full recovery, is also not routine. The majority of people who end up in a chair spend the rest – or the majority – of their lives in it so I realise how lucky I was, and am.

It took about 9 months, or a year, to actually get back to normal after leaving hospital. Obviously I still had to contend with the fact that my legs, and body, were extremely weak – I couldn’t walk far or do too much at all without having a rest. I suffered from appalling cramps and pain for a long time (still do, actually) and because I had spent years toe walking I had to learn how to walk again as no part of my body, posture or balance was used to walking properly.

It was a very difficult time and I was told to expect a long and challenging recovery, with compromises and changes needing to be made. One of these, I was told, was that I wouldn’t be doing anything too strenuous for a while and definitely wouldn’t be doing anything ‘dangerous’ or potentially damaging.

So, of course, I took up martial arts the moment that I had the stamina, and balance, to do so.

Thankfully my instructor – while being an ex army guy, from the Midlands of England, and a bit of a hard man – was also someone who never expected anyone to do anything more than they were capable of doing. That isn’t to say that he never pushed people – or me – to their limits. Oh my God but he did that, time after time, but he also realised that – at the start, at least – that I had physical limits. He worked with me, on those, for many, many, years. I will always complain about the hard times, about the nights I came home from class exhausted, or covered in bruises, or with clumps of hair missing from my head (wrapped around his fingers, normally) but I will always look back and be so – SO – grateful for the lessons he taught me.

Not just about martial arts but – as anyone that has really studied them will understand – about life in general as, to do the former well you have to let it envelop the latter.

I spent every possible moment, for about four years, training, studying and exercising. My whole life, at that time, was kung fu, my academic studies, and my social life – in that order. The fact that the majority of my friends were in the kung fu class wasn’t an accident either. It was, you see, my life.

It was also the thing that taught me the one lesson that is a blessing and a curse; the way that I have to live my life, thanks to the rare disease.

I have to work twice as hard to be half as good as everyone else.

That used to really, really annoy me. Anything that requires anything remotely physical can be challenging for me – not impossible, not beyond achieving, just difficult. I look at other people – now and back then – and see how easy things are for them – things that they take for granted. Things that I have to work at, to push past discomfort to do, that will take something out of me and leave me weak, tired and sore the next day (or hour).

I used to train four or five days a week, every week, in kung fu just so that I could keep up with the people who were training one night (90 minutes) a week. Mentally I was better than them, I was picking things up faster than most of them, but physically I wasn’t half as good as them.

But I sure worked twice as hard.

I had to.

Nowadays that lesson – working twice as hard to be half as good – is still with me in everything that I do. The mental – and physical – dedication required to study martial arts, for example, over an extended period, has helped me with every aspect of my life. I never look at anything that I am required to do and think that I can’t do it – I simply accept that it will be harder.

And do it anyway.

Twice as hard to be half as good is how it started and, to be honest, how it still is sometimes. Rare diseases – limitations – physical differences – however don’t always mean that you aren’t as good as others; sure, you may not be as physical fit, or strong, but that isn’t the same as being as good as.

I started kung fu twenty three years ago, mostly because I was being stubborn and wanted to prove the doctors (and possibly my own fearful mind) wrong. I worked more than twice as hard to stay half as good as my peers for a while and then, guess what, something happened:

I was working twice as hard but becoming better and better – not stronger, or fitter – but better. Twenty three years ago I started kung fu and, now, I still teach classes twice a week and hold four black belts.

Everything that came before led to everything that I do, and am, now. Just because I have a rare disease or two doesn’t mean that every part of my life is predicated by, or affected by, it. Just because I have to work twice as hard doesn’t mean that it is difficult, or not enjoyable, all of the time.

I could be dead; I could be in a wheelchair; I could be so much worse than I actually am but I am none of those things.

I am simply me; and that is because that is what I have fought to be.

I won’t ever stop doing that.

– – – – –

http://www.rarediseaseday.org/

@rarediseaseday #raredisease #rduk

Spotlight: Conversations With Mother Goddess by Natalie Kawai

Natalie Kawai is a Spiritual Teacher and Guide. Born on the shores of Lake Geneva, Switzerland, she now lives in Hawaii. Clairaudient from birth, she has always been haunted by the mysteries of life, why we are here, and our role in the universe.

Moved by her intense desire always to go deeper in understanding the whys of the whys, she found the voice of the Great Mother of Creation twelve years ago. Since then, she has studied relentlessly with the Supreme Being in a constant and intense dialogue. This practice led her to understand why a gulf still exists between our divinity and our humanity. Under the Great Mother of Creation’s guidance, she founded LST™—Light Speed Transmutation—a radical system to restore our lost consciousness and drive out the last part of our ego.

http://www.conversationswithmothergoddess.com/

FaceBook: https://www.facebook.com/HolisticHealingIntensive

Google+ https://plus.google.com/+NatalieKawai808/posts

Twitter.com https://twitter.com/nataliekawai

Buried in our soul forever, there is a piece of us that has not as yet been activated. That piece is the lost consciousness, the missing link guiding us to wholeness. As human beings, we have sought wholeness and connection with each other in the best way we know how by mimicking and emulating Source as we understand it.

Unfortunately, we cannot find wholeness because we have been missing part of who we are. As a New Era dawns for humanity, we now have to complete the process by gaining the consciousness we lost when we first incarnated at the beginning of time.

Natalie Kawai has found the key to completing that process. In Conversations With Mother Goddess, she shares what she has learned through her dialogues with the Great Mother of Creation. Part explanation of humanity’s origins, and part conversation about how humanity can move into a new and complete future, this book will bend your mind in new and surprising ways, preparing it for the next step in your soul’s evolution.

Discover the part of you that you have always been yearning for, but never knew how to find. Join others in this exciting journey to restore harmony, creativity, and peace in all of us. Then prepare yourself to help bring about Heaven on Earth! It will happen if we all make the effort….

Grab your copy of the book today!

www.ConversationsWithMotherGoddess.com

http://www.amazon.com/Conversations-With-Mother-Goddess-Everlasting-ebook/dp/B0116M5LQ8

Author Top 10
Tuberoses
orange and pink
thrillers with steam, intense passion, and emotions
Hawaii
Meryl Streep
Alex Mc Laughlin from
Hawaii five-0 ( hi
hi)  
 La Reina del Sur
Shaw-shank redemption
Thelma & Louise
Legends of the Fall
Spy Game

 

 

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“Writing with Conscious Respect” by Jay Wilburn

deadsongOne of my favorite things to do with fiction is to do an effective job of writing characters that are different from me. I am a person of faith, but I enjoy writing characters that think differently from me on that. For fiction to reflect the full range of humanity, especially a dystopian story that throws together survivors of different backgrounds, it serves story to include characters from different races, different origins, genders, sexual orientations, etc. There is an added responsibility when writing characters from these varying backgrounds to write them well.

Writing a character well means writing a character with realistic flaws. There is a danger of falling into stereotypical characteristics when trying to do this. Our minds tend to take the path of least resistance and trying to be realistic often can go to choosing the path that is easy and may weaken an otherwise good character.

Writing characters requires writing people. Each individual is complex and two characters that share a common characteristic such as race, orientation, or any other aspect of identity, can be as different from each other as any other characters. It is good to not define a character by one key or token characteristic. It also serves not to ignore that aspect of their identity. If all characters are written the same as they would be otherwise, then why do the distinguishing characteristics matter at all?

There is a balance to be struck, but that is true even if we try to be safe and don’t venture into drawing characters from all aspects of life. It is not a matter of completing a checklist to be sure all permutations are represented, but there is great potential for enriching a story by varying the cast. Writers should be aware of the responsibility to respect and realism that goes with penning characters that are different from us in thought, beliefs, or characteristics.soundsuffer

Check out the latest book and music from a new series by Jay Wilburn:

The Dead Song Legend Dodecology Book 1: January from Milwaukee to Muscle Shoals –  http://www.amazon.com/exec/obidos/ASIN/B00YDZKXCI/jaywil0d-20

The Sound May Suffer – Songs from the Dead Song Legend Book 1: January –  https://itunes.apple.com/us/album/amazing-circle-of-suffering/id996569862?i=996569871&ign-mpt=uo%3D4

wilburn

 

Jay Wilburn lives with his wife and two sons in Conway, South Carolina near the Atlantic coast of the southern United States. He taught public school for sixteen years before becoming a full time writer. He is the author of the Dead Song Legend Dodecology and the music of the five song soundtrack recorded as if by the characters within the world of the novel The Sound May Suffer. Follow his many dark thoughts on Twitter @AmongTheZombies, his Facebook author page, and at JayWilburn.com