Musings

Braaaaiinnnnsss!! Grab the machete, board up the doors and windows because it’s time to prepare for the brain eating and bloodthirsty zombies that will scuffle into our communities at any time completely unannounced. The undead will rise again, so it’s essential to pack your first aid kit now! Keep them handy at all times because no one knows when those nasty zombies will come a knockin’! Don’t pack your basic first aid kit either with just gauze, bandages, and creams. No Red Cross first aid kit or military first aid kit will cut it when the dead walk the earth!

To prepare for the zombie apocalypse the right way, pack the best first aid kit possible with only the finest first aid kit supplies. Don’t forget to pack a baby first aid kit that is small enough to fit in your back pocket, because you never know where you’ll be when the apocalypse strikes and the walking dead are among us. Without this you’ll be a goner for sure! Check out the zombie apocalypse first aid kit checklist infographic below if you want to live! Be sure that the first aid kit contents you have are exactly what you need to survive the zombie apocalypse and, good luck.

Creating a zombie apocolypse first aid kit

So it looks like the Mayans were wrong – though, in actuality, I never thought they were ‘right’ – as we are going to continue on our merry way into 2013 so I thought that this was a great time to have a look back.

It has been another great year.

I am with my wonderful wife, best friend, and soul mate: Carole.

Our two boys – Mackenzie and Nathaniel – continue to be wonderful and while I can no longer call them babies, as they are five and three, they are – and always will be – my babies.

I started working with the Northern Ireland Rare Disease Partnership this year, and had a verbal sparring match with my Minister for Health on my birthday.  I became a Governor at my kids’ school and a Director for the Arts and Disability Forum for Ireland.  This is part of how I feel I can give back.

I saw another of my two students become black sashes in Kung Fu and realise that no matter how long I stay active in the school I have shaped a legacy that will go on as long as the school exists (and beyond).

I became a co-host on the Following The Nerd radio show, and contributing writer on the website, with the bonus of meeting the owner, Marc Savage who has become a really good friend.  Through that I have spoken to people like Chris Ryall, Declan Shalvey, Will Sliney and Todd McFarlane – yes, this nerd is living the dream.

If I get through the next twenty four hours I will have gone a full year without being in hospital or A&E (yes, I am counting down the minutes!).  I have had many a treatment and drug trialled and, disappointingly, still no mutant powers.

I attended a two day writing work shop with Colin Bateman and, from that, I have solidified not only my desire to write but also my intent to write better and professionally.

I have had a further seven stories published this year, sharing cover space with two people whose writing I adore: Wayne Simmons and David Moody.

I have plotted my first novel, the research stage is mostly finished, and the outlining complete; actual fingers to the keyboard recommences early in the New Year (the 2^nd of January, to be exact).

I have published over 100 stories for With Painted Words and The WiFiles, and have read in excess of 1000 stories along the way to that.

…and now 2013 is about to commence, with 2012 coming to an end, I wonder just what the chapter of the story will bring?  Whatever it is I bet it will be interesting!

TALLYHO!!!

I feel a rant coming on; you have been warned.

Northern Ireland today sees the opening of a Marie Stopes clinic. To give you a brief idea of what Marie Stopes offer they do contraception guidance and supplies, health screening for men and women, STI testing, vasectomy counseling and procedures, female sterilization counseling and procedures, the morning after pill, and yes they give advice on abortions and carry them out too … ONLY if the fetus is under 9 weeks and there is a medical cause for the mother herself. That is the same as any NHS hospital in NI.

However the press, the politicians and the rabid public are only seeing one thing, which is evident in what they are calling the place: ‘ABORTION CLINIC’!!!

Now the Northern Ireland Attorney General has called for a Stormont investigation into the opening of the first private clinic in Belfast ‘to offer abortions.’ The thing is that Stormont has been very aware of this place opening for a loooooong time, in fact it is even being run by a former Stormon MLA, Dawn Purvis.

Yes, abortions are a very emotive topic but I wish that people would actually do two things: 1/ do the research and find out the factual information before they get all irate about something and 2/ leave the sensationalism out of things and report – or comment – on it openly and fairly.

The fact of the matter is that the Marie Stopes clinic has said it will carry out medical, not surgical, procedures only up to nine weeks gestation and only within the existing legal framework.

It said that the health professionals in the clinic will be from Northern Ireland and that they will make the assessments, although the views of the woman’s own GP will be taken into consideration.

They are doing the same thing that is ALREADY available, via the NHS, anywhere in Northern Ireland; all they are doing is giving a rounded service to do with sexual health, under one roof.

They are NOT offering a private abortion service, on demand, for any reason, up to 24 weeks … which is what the press and public seem to be implying.

So pro-choice or pro-life, it doesn’t actually make a difference at the moment – just get the facts right and stop making a sensitive issue into a hysterical witch-hunt that is only hurting and demonising the people that the clinic is trying to help.

Feel free to comment – however if it gets personal or stupidly over the top be aware that I will delete the comment.

Early last year – possibly about 15 or 16 months ago – I had a fall at work and injured my hand and arm.  It wasn’t anything too serious – my hand was strapped up and I was in a sling for a couple of weeks.  After that I noticed that I was having occasional aches in my arm – running down from the elbow to the hand – and that I was having a weird feeling, almost pins and needles, or a half-asleep sensation in my little and ring finger.

This kept going, on and off, over a number of months.

Eventually – when the numbness became more pronounced and more pervasive, with a dulling of sensation in the fingers at all times and aches/pains becoming more frequent (especially when touching anything cold … OUCH!) I went back to the GP.  Her first port of call (quelle surprise) was that it was probably related to my ‘condition’ so would send a letter to my neurologist to ask him to look into it.

A couple of weeks back I realised that nothing had ever happened and that the issue was becoming more pronounced and more annoying (affecting my writing, martial arts, etc) so went back, seeing a different GP this time.  I found out that while a letter was to be written there, somehow, didn’t seem to be a trace of that actually happening.  So, we started again … he was actually more thorough (he booked me in for two appointments, bless him – one to read through my copious notes in advance of actually meeting me – the second for the actual consultation) and stated that while it could be related to my genetics it could also be many, many other things so wanted to cover all the bases before moving to the neurology answer.  This included mobility tests there and then, sensitivity tests with needles and tissue (to see if I could tell the difference … I couldn’t), a normal check-up, and blood tests.  Many, many blood tests.

So, last week the results of the tests came back and when I phoned for them on the Monday afternoon I was told they were all clear.  Then yesterday I got a call from the GP asking if I could make an appointment to see him … I said yes, and mentioned next week, he said no and said then and there.  As I was over an hour’s drive away, and it was 6pm, we compromised on first thing in the morning instead.

It seems that while I was told everything was clear there were a few things that weren’t.  Namely my lack of B12 and Folic Acid.  Between Monday evening and Wednesday the GP had contacted my neurologist (who is actually out of the country on vacation but upon getting a message it was about me phoned the GP) and together they decided there was some urgency involved here.

Why, you ask?

Well, I can answer that now, as it was made VERY clear to me this morning: low B12 and Folic (or Folate) levels can affect the body’s ability to produce fully functioning red blood cells … cells that carry oxygen around the body … oxygen that, due to the genetic condition, is already hard to come by for me. Folic acid deficiency may cause fatigue … and due to the genetic condition I am already prone to fatigue which (as it did last year) can lead to complications like respiratory failure.  Both low B12 and Folic Acid also help with nerve related things … and my genetic condition is caused by poor communication between nerves and already weak muscles.

As I said it was made VERY clear why this was more serious than ‘just a vitamin deficiency’ … yes, I said that to the GP   He pointed out that you wouldn’t normally get a world class neurologist and a GP talking across continents to discuss immediate treatment for ‘just’ a vitamin deficiency (I have a feeling he may have mocked my ‘just’, you know!).

So, anyway, I was immediately given a barrage of more blood tests to see what else is going on – they’d like to know WHY my body is no longer absorbing B12 and Folic Acid as my diet hasn’t changed so should be giving me enough (he said I’m getting enough just not keeping it / using it correctly).  Eleven vials of my precious red liquid later and I was then given two injections, and have to go for a top up every other day for the next few weeks and then (hopefully) they’ll stretch this to every three months.  The things is that when I asked when this would stopped he seemed to imply it may not … could be this injection for ever :/

My neurologist has already phoned a colleague of his and arranged for me to be seen immediately (they’re contacting me tomorrow or Monday (which I think will be Tuesday as it is a bank holiday) to arrange date next week or early week after to get muscles and nerve conduction checked too … there is a chance that the arm/hand trouble is linked to genetic condition, or to B12/Folic Acid lack leading to nerve damage, or muscle contraction trapping/damaging a nerve.  Basically they don’t know but don’t want to take any chances.

My frequent flyer, platinum loyalty card for all things health related seems to have been used again.

In the meantime I am to turn up every other day to get injected with huge doses of hydroxocobalamin (B12 replacement), I’m to take huge daily doses Folic Acid and I’m to monitor myself for signs/symptoms that are unusual, that are worse than normal, or that come on fast … why is this?  Well, you see, by giving me the huge doses of B12 and Folate they are going to reduce my potassium even more as a side-effect.

And, guess what?

Yes – that’s right … low levels of potassium cause muscle aches, cramps and weakness. Low potassium levels also won’t allow neuromuscular cells to recharge, which prevents them from firing repeatedly.   So, in other words, they are going to make my already wonky muscles, and neuromuscular junctions, even worse!

I think that my motto, from now on, should be this: every silver lining has a cloud!!!

Just wanted to say how happy I am for, and proud of, the wonderful Mercedes Murdock Yardley on the upcoming release of ‘Beautiful Sorrows’, a collection of 27 short stories from Shock Totem Publications.

Here’s what Shock Totem Publications has to say about the book:

There is a place where sorrows pile up like snow and rest in your hair like cherry blossoms. Boys have wings, monsters fall in love, women fade into nothingness, and the bones of small children snap like twigs. Darkness will surely devour you—but it will be exquisitely lovely while doing so.

Mercedes M. Yardley’s Beautiful Sorrows is an ephemeral collection encompassing twenty-seven short tales full of devastation, death, longing, and the shining ribbon of hope that binds them all together.

The official paperback release for Beautiful Sorrows will happen on Saturday, September 22, in Las Vegas, at the fourth annual Killercon convention. The entire Shock Totem team, as well as some of our extended staff, will be on hand for this event, and Mercedes will be autographing and reading from the collection.  Beautiful Sorrows will be available in limited edition hardcover, paperback and e-book format (keep checking Shock Totem for details).

I can’t say how pleased I was to see this news about Mercedes’s first book.  I’ve known Mercedes since way back in September/October 2009 when her short story ‘Ephemerality’ became the first story ever published at my fledgling magazine, With Painted Words (you can – and should – go and read it HERE).  Since then I’ve found in her someone strong, brave, funny, loving and – of course – talented.  I’m so proud to know her as she’s one of the special people who never fail to make you smile and I look forward to the day when we meet … and our kids raise Hell together

Here’s to you, my friend, and may all your sorrows be beautiful ones.

Mercedes M. Yardley wears red lipstick and poisonous flowers in her hair. She writes whimsical horror, nonfiction, and is the nonfiction editor for Shock Totem: Curious Tales of the Macabre and Twisted.

To find out more about her please visit: http://abrokenlaptop.com/

I’m not really prone to introspection at the best of times and when it involves self-praise I really avoid it. However I was asked recently why I had the phrase ‘hopeful writer’ in my biography. When I explained that I thought that I was still simply dabbling at this literary lark and that, one day, I would no doubt be caught out as the pretender that I view myself as, it was pointed out that I am either an idiot or full of false modesty (they actually said that I was full of something else, but we will stick to the nicer version of things). Now, I am really not one for false modesty either so that left me with the other option.

An idiot.

Honestly I don’t think that I am that either (at least not all of the time) so just as I forced myself to do back in February, during the lead up to Rare Disease Day 2012, where I ‘outed’ myself as someone who lives with a rare genetic disorder (no, it isn’t idiocy so if you want to find out what it is, or more about it, go read the archives) I was challenged to look critically, and honestly, at what I had accomplished, in terms of writing, so far.

So, here goes:

Back in September/October 2009 I had my first short story, ‘Rainbow’ published in a short-lived print magazine called ‘Offshoot’. Since then I’ve had another twenty-five pieces of work – poetry, micro-fiction, flash fiction, short stories, and even a novella – also published. Out of those there have been a couple of award winners, a story short-listed for the Penguin Ireland Short Story Competition. Individual stories ranked pretty highly in the critically acclaimed Preditors and Editors polls and had positive reviews in places such as Barnes and Nobles. I even have a collection of short fiction (aptly title ‘Short but Sweet’) available on Amazon.

I compiled and edited a collection of superhero fiction for an anthology entitled Powers, which included sixteen short stories and one novella. This was long listed for an Eagle award.

I started publishing two online magazines. One, With Painted Words, is published monthly and is for poetry, micro and flash fiction inspired by a different piece of artwork. To date it has published one hundred and forty two individual pieces of creative writing. The second, The WiFiles, is a weekly speculative fiction publication, which is queued up well into June 2013 and has accepted over one hundred pieces of fiction so far.

Coming soon is also an independent small press for collected anthologies, charity books, and much more.

Coming even sooner (as in it has already started) is my first real attempt at a novel. A LOT of work – planning, outlining and research – has already gone into it and I am now at the stage where that is all being collated into actual initial drafting. In other words, I suppose, I’m actually writing a novel.

To summarise:

26 publications – awards & short-listings – anthology edited – over 240 other peoples’ stories published – small-press on its way – novel commenced

If those paragraphs above were about anyone other than me I’d be impressed. I’d probably also be a little jealous. You see that is where I’d want to be, what I would want to have as MY ‘brags’. Of course, only an idiot would be stupid enough not to realise that those accomplishments were their own, wouldn’t they? Only an idiot would fail to see what was in front of their own eyes.

Sp what that boils down to is simple: either I stop using the word ‘hopeful’ – at least as far as it means prospective – from my bio or I start using the word ‘idiot’.

Yesterday was a pretty wonderful day.  Journey to Stormont wasn’t too bad: very quick car drive in, wander around Belfast, managed to get a shuttle bus before the 500 people queue formed and then a gentle 70 minute journey (normally takes about 15) through multiple police checks.  The estate entry itself was easy and there was a tonne of stuff to see and do (food stalls, bouncy castles, amusements, live music, etc) while waiting for HRH to arrive.  Was extremely warm and, after a couple of heavy rain bursts (we were bone dry; tree umbrellas at Stormont are great) the humidity factor did start hammering me so body/breathing was getting ropey but managed to remain vertical until The Queen’s arrival and drive-by … including having a Mackenzie on my shoulders so that he could see (yes, I am paying for that one now!).  Was definitely worth going to, of course; how many kids can say that they were at a Jubilee celebration for the Queen of England, in Stormont, on the day that she shook hands with martin McGuinness?!  That’s history, that is

Exit from Stormont was mad – we stayed around for a good hour or so after HRH left (watching the exodus of people thereafter) and did the bouncy castle again, got some ice-cream, listened to music, etc.  There was STILL over an hours wait for the shuttle bus, and no cabs were taking bookings for the area due to congestion and lack of cars, so decided to go to the Stormont Hotel instead, to grab some dinner.  At 5:15pm we were told it would be 7:30pm before they could seat us and decided to just go and queue for one of the shuttle buses … only to find a beautiful taxi-man right outside who drove us back into my carpark for only £20 (normally £15 ish so not bad at all!).

Carole, on the taxi ride back into the centre of Belfast, had the foresight to book at table at Eds Bar and Grill so we stopped and had a wonderful (if tired) dinner at their fabulous eatery … though I did forget to pick up the £10 voucher I won (again) whilst there, so really must do that sometime soon.  Great service, entertainment for the kids, and good food – what more can one ask for?

Very late night for the boys as it was after 9pm when we got them in bed … I say ‘we’ but, by this time, i was somewhere between horizontal and vertical on the couch trying to decide between aching, breathing or staying awake.  Ultimately I didn’t make the decision but, at about 11:30, Carole woke me up and dragged me upstairs were I don’t recall anything until just before 7am when Nathaniel wandered in and asked it if was time to go to nursery.  It was his taster session (an hour or so) in his new nursery while it was Mackenzie’s first day in P2 (again a taster as he spends a couple of days there before summer).  More history in the making, as both boys are now officially in full-time education – forget HRH’s 60 years, where on Earth has my childrens’ time gone?!

Mackenzie is still at school, Nathaniel had a blast at nursery (didn’t want to leave) and is now with his grandmother, and I’ve got a car with a flashing maintenance light just as I’m meant to be driving 50 miles through rain and floods to work … life, ey?  One day your at a party for the Queen and the next you are tired and sore and wondering if your car will explode

credits

from GeekDad, track released 13 June 2011
John Anealio: Vocals, Electric & Acoustic Guitars, Bass, Organ, Synth, Ambient Loop & Drum Programming.

Music by John Anealio
Lyrics by John Anealio & Z.

For more wonderful stuff check out http://johnanealio.com

As the more eagle-eyed of you – or perhaps just those of you who are awake, paying attention, and had your medication – will remember in February 2012, during the lead up to Rare Disease Day 2012, I ‘outed’ myself.

Now, before any of you get the wrong idea I didn’t come out as gay as I’m not that way inclined – not that there is anything wrong with that, of course, and not that I possibly wouldn’t be tempted if Ryan Reynolds turned up at my door with flowers and a smile – I just happen to prefer women; and, by women, I do mean woman as I am extremely, happily, married to a wonderful one who may be a tad annoyed if I suddenly became polyamorous though, again, if Sandra Bullock came begging at my door … but I digress.  When I say outed I simply mean that I made it publically known that I lived with (not suffered from, remember!) a rare disease or two.  If you want to know more about that you can easily find out by looking back through my blog posts.

I’m lucky, I know that.  My muscles are weaker than average, I fatigue faster than normal, I don’t have a very good track record with breathing as well as regular folks, and if I get ill it can hit me in a big way.  However I lead a relatively healthy and active life; yes, I do have to make adjustments to what I do, and plan activities around how much energy I need to use versus how much I want to risk not breathing  … so hills, lots of stairs and arduous stuff is completely out of the window … but, on the whole, I’m not majorly affected (by my terms).

If you passed me on the street you may admittedly remark on how amazingly attractive, witty and urbane I appear (of course you’d be right on that and, in many ways, that is my real disability – being a paragon of awesome in a world that hates and fears us pretty folk) but unless you were very observant you probably wouldn’t pick up on any of my disadvantages – yes, I walk a little slower, my breathing may be laboured, I may not be lifting/carrying as much as you’d expect but, on the whole – as I’m not in a wheelchair, don’t use walking aids often, or have medical devices strapped to me – you’d probably think that I was pretty normal.

However last couple of days two things happened that, being honest, shook my foundations a little.  The first was an internal thing; I was baking a cake (a German, sour-dough, friendship cake with desiccated coconut, almond and cocktail cherries – delicious in case you were wondering) which was rather thick and stiff.  While stirring and mixing the ingredients I suddenly realised that I actually WASN’T stirring or mixing the ingredients … the spoon wasn’t moving.  I tried very, very hard to stir it; I changed my grip on the bowl, I changed my grip on the spoon, I changed hands, etc.  Pesky thing wouldn’t move.  So I did the obvious thing – I called my wife and got her to stir it.  Obviously … OBVIOUSLY … I knew that there was a fault somewhere along the line: the spoon wasn’t the right sort, the bowl was causing too much friction, the ingredients had morphed into super-glue, a nearby pinhole blackhole was exerting enormous gravity on the localised area of said cake.  Or something.  I knew … KNEW … that Carole wouldn’t be able to stir the stuff either.  But she did; rather easily too.

It was just that I wasn’t able to do it myself.

Now it was rather late in the evening and I’d had a busy day at work; I’d had a busy week/month at work too.  I’d had bronchitis within the last month and, within the last week, had had gastroenteritis so wasn’t at my best.  But it was still just stirring a simple cake mix; I should have been able to do that, surely?

No.  I couldn’t do it.

That was rather annoying.  That was rather frustrating.

… the cake, though, was rather delicious (which Carole maintains was due to her stirring, of course).

Next day – yesterday – I was at a work event, getting acknowledged for my greatness (true story; me and a bunch of colleagues were at a rewards and recognition lunch for our continuous professional development in terms of qualifications and specialisms)  when I was asked by a colleague if I was ok.  I asked why and he said that I looked like I had been punched in the eye (or was having a stroke – he actually was very concerned).  Now I was tired and sore and … well think of any negative adjective for being as weak as a weak kitten and still trying to function at 100% which is pretty normal for this type of genetic muscular condition and you’ll get the idea … but, on the whole, didn’t really feel that much different to any other day.  I went into the bathroom to have a look at what he was talking about and this is what I saw:

That is called ptosis.  Ptosis is a drooping or falling of the upper or lower eyelid which, as you can see by the photo, is pretty self-evident and myogenic ptosis is a known symptom in CMS (and other diseases) which basically means that there is a dysgenesis of the levator muscle … the muscle either isn’t 100% or it doesn’t function 100%.

Now as physical symptoms and ‘tells’ go for me in regards to my wonderful genetic mutations that isn’t a major one; it isn’t even particular debilitating.  I know this.  I’m rather intelligent so, mentally, I realise that a half closed eye doesn’t cause too much trouble (tired eye, headache sometimes, slightly weird/blurred vision) and isn’t normally noticeable when compared with using a wheelchair or obvious aids like that.

… but it annoyed me.  It frustrated me.  Someone had noticed that I wasn’t right and had called me on it.  My gloating in February that I had done something ‘big’ by admitting my issues was completely and totally challenged by my reaction to someone realising there was something wrong when I wasn’t telling them of my own choosing.

I didn’t like it, Sam I am, I didn’t like it at all.

I still don’t like it.

It has stayed with me and I am very self conscious about it now.  I’m checking my eye a lot, seeing if it is more or less open than usual … .not even knowing, really, what is usual.  I look like I’ve had botox as I’m trying to keep my forehead tight so that my eyebrows are raised, so that my lid is lifted a little.  It looks stupid and it is giving me a headache.

But I’m still doing it.

Because as much as I would love to say that I’d accepted this ‘thing’ of mine – as much as I’d love to be the bigger person and say that the little things don’t matter – I can’t.  I haven’t and they do.

However I’m posting this blog … and especially ‘that‘ photo … because I will try to accept it better, and will try to not let the little things (or the big ones) get to me.

Because without trying you never know if you’ll like the green eggs and ham, ‘ey Sam?

OK, Northern Ireland decision makers … when will you realise that perpetuating a state of apartheid within our Country, starting at the earliest ages by having a state backed segregated education system means that you have no leg to stand on when decrying the fact that sectarianism exists here?

Support and promote integrated education here in Northern Ireland (or the north of the Island if the other offends your delicate sensibilities) and within a few generations there will be no culture of hate, or them and us … just US!

When children from one religion actually grow up and go to school with, hand in hand, children from another religion they will understand and respect each other and THEIR children will not see the differences between them, or feel ‘hate’, simply because of which church (if any) they attend, or which football team they support, but will see the similarities.  Children do that, you see, they find the things that make them alike rather than dwelling on the spurious, man-made devices, that make them different.

Maybe they should be running the damn Country; couldn’t do a worse job, after all!