Four little words – a Rare Disease Day post

Rare Disease Day 2012Do, or do not. There is no ‘try.‘” — Jedi Master Yoda

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It is now 29th February, which is important for two reasons – it is my birthday and it is Rare Disease Day.

Now depending on your perspective one of those is more important than the other. I’ll let you into a little secret and tell you which it is for me. I am a year older but don’t feel much different than I do any other day of the year … I’m tired, I’m sore and I feel like I’ve been hit by a truck, by that is normal some days; I had a really nice day, being spoiled by my wife and children … that is something that happens most days too, and I realise how lucky I am to have them; I’ve had a tonne of well wishes and greetings from all around the World, with people simply being nice to me … and I am so lucky, in my life, that that is a regular occurrence.

So, yes, it is my birthday – and it is a special one too, especially as it is a Leap Year, so a ‘real’ birthday, but ultimately it is just another day.

Rare Disease Day is so much more important than my birthday – than me personally – and that is why (instead of lazing around, opening presents, eating cake, etc) I spent the day at Stormont, home of the Assembly / Executive in Northern Ireland (our Government, basically) to help try to raise awareness and support for Rare Diseases here. Today was the day that the Northern Ireland Rare Disease Partnership was officially launched, along with a report by the Patient and Client Council, which captured how people were affected by rare diseases in Northern Ireland.

That report, based on a survey conducted of 132 people (both patients and carers) – one of which was me – affected by over 60 different rare diseases, reveals:

· 29% of patients wait between 1 and 5 years for a correct diagnosis and over 20% wait over 5 years;
· 34% of patients are misdiagnosed – 20% of which received inappropriate treatment as a result;
· Patients have to attend multiple appointments with different health professionals to obtain a diagnosis and it is frequently a battle to do so;
· 57% of people caring for a person with a rare disease do so for more than 20 hours a day;
· Over 40% of patients described their experience of the health and social care service in Northern Ireland as “poor” or “very poor”, and nearly a quarter described it as “average”. Only a third of patients described their experience as “very good” or “excellent”;
· Patients also reported feeling ignored by doctors, and that there is a lack of information and support for rare disease patients.

I sat there, and listened/watched the findings of the survey, the personal stories of people affected by rare diseases, the determination of the people behind the Northern Ireland Rare Disease Partnership, and even Edwin Poots (MLA) the Minister of the Department of Health, Social Services and Public Safety in the Northern Ireland Executive pledging his support and realised that I wanted to do more than I have been.

Admittedly that isn’t too hard. Until recently, as you know if you’ve been reading this blog for the last month, I didn’t even tell people that I had a rare disease myself so all I have been doing is using my own experiences as a sounding board for others. I don’t know if that has achieved much, or helped, but the responses I’ve got have been heart warming and humbling.

So I wanted to do more. At the conclusion of the event I spoke to the Chairperson of the NIRDP, Christine Collins and her colleague, Fiona McLaughlin, and told them about me. I didn’t really hold back at all – which is much harder in person than it is behind the safety of a keyboard – and I then told them about what I do for a living. At this point I took a very deep breath and told them that I wanted to help them in the amazing work they are doing for rare disease awareness and support in Northern Ireland … and they were very, very pleased to hear from me indeed.

So much so that I seem to have joined the Northern Ireland Rare Disease Partnership and am now going to be their IT/Social Media person.

I suppose that counts as me ‘doing something’, doesn’t it? :)

It made me think, though, about myself, how I live my life, and how I make my choices. I teach martial arts, as I’ve mentioned before, and one of the lessons I learned early on – and a KEY part of how I teach all of my students today … whether they are fit, able bodied, unfit, or physically different … is simply this:

Don’t tell me what you can’t do until you’ve tried – and then, if you really can’t do it, fine, tell me what you can do.

You see it is easy to say that you can’t do something, especially if you have never tried. It is even easy to use an excuse of a handicap, or physical limitation, as a security blanket – I know this, I’ve done it myself. Easy, however, isn’t the same as right.

Something that shouldn’t come as a shock to anyone is that life isn’t always easy. However it is something that we all have to do each and every day – the only alternative, after all, to living isn’t much of a choice we want to make ;) Too often I think that we all give up before we’ve tried, or think that simply trying is enough. It isn’t. Doing is what we should all commit to, not trying. Even if we fail we simply do it again, and again, and again until we can do it.

Or, if we really, really, can’t do it then we step back, have a break, think about it, and move on to something that we can do.

For me personally I am never going to be able to do something of the things that I would love to – I mean I’m not going to represent my Country in the Olympics (archery and/or fencing would be my choices) and I’m never going to be a World class, classical, violinist.

However this isn’t because (or at least not solely because) of my genetic peculiarities. There are seven billion people on this planet and how many of them represent their County at the Olympics, or play violin at a top level? Yeah, not many.

However, I don’t focus on what I can’t do – I’ve done SO many cool and amazing things: I’ve got four black belts in martial arts, I’ve swum with dolphins, I’ve played in front of a crowd in a rock and roll band, I’ve had my writing published professionally, I’ve worked for Marvel Comics (albeit it for only a few days :) ), I’ve driven across Europe on my own trike, I’ve got the two most beautiful and perfect children in the World, I’m married to an amazing woman who simply completes me, I learned to walk again, I didn’t die when I might have died, I’m in great shape, all things considered, and I have learned to know – and work within – my limits.

Do you know why this is?

I’ll tell you and this is as close to advice as I will come to giving anyone who is reading this.

Don’t ask this question:

What can you do?

Make this statement.

Do what you can!

It is the same four words, just changed around a little – and that is me, that is my life. I am the same as everyone else, I am the same as I would be if I wasn’t a member of the exclusive rare disease club, but I’m just changed around a little.  I just have to, sometimes, do things differently.

I decided either to do or not do. If I don’t want to do something fine. I don’t do it. But I don’t pretend that trying is the same as doing. They are two completely different things.

So I don’t ask myself what I can do, not anymore – and never again – I simply do what I can … I DO them; I don’t try.

Thanks for reading.

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If you are affected by a rare disease, or you know someone who is, please feel free to contact me if you would like to share your experience on here as that would be more than welcome!

http://www.rarediseaseday.org/

@rarediseaseday #raredisease

Twice as hard – a Rare Disease Day post

Rare Disease Day 2012

Rare Disease Day 2012

“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

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In one of my previous posts I mentioned that 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.

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If you are affected by a rare disease, or you know someone who is, please feel free to contact me if you would like to share your experience on here as that would be more than welcome!

http://www.rarediseaseday.org/

@rarediseaseday #raredisease

Creator Owned Day – 1st March 2012.

A friend of mine – Stephen Downey – is doing something pretty cool so I think that all of you – YES, YOU! – should read this and possible join in:

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Creator Owned Day is 1st March 2012.

The challenge:

Create a sketch of an original character or concept and and post it on your blog Thurday 1st March. It should be a concept completely owned by the artist (or co-owned with the writer/collaborators permission to post).

Why? A number of reasons: 

1. A lot of reader and creator focus is on characters owned by larger corporations. Let’s bring a little spotlight on creating brand new, creator owned concepts.

2. Bringing a little awareness to the business side of co-creating original content. Take a look at Jeff Parker’s article and follow up comments on the subject. Co-creators can take this opportunity as a little trial run, just make sure to have a mutual agreement in advance.

3. Fun! A few creators discussed the idea on Twitter and thought it was a great opportunity to create something entirely new, while bringing attention to these sketches.

The details:

1. Create an sketch of a new character/character you own. We’re doing this primarily to get our imaginations running, so a concept specifically created for Creator Owned Day is probably ideal. It should NOT be a character owned by either a company eg. Marvel’s Wolverine, OR owned by other creators e.g. Todd McFarlane’s Spawn. It also shouldn’t take distinct features from characters owned by others e.g. Wolverspawn You must own the character.

2. Post it on your blog, or Facebook, Twitter etc.

3. Share your post using the Twitter hashtag #CreatorOwnedDay.

3. Help us spread the word by retweeting your favourite new characters.

Sound like fun? Let’s do it!

http://www.stephendowneygallery.com/2012/02/creator-owned-day-march-1st.html

On Angels’ Wings – a Rare Disease Day post

Rare Disease Day 2012The wings of angels are often found on the backs of the least likely people.” ~Eric Honeycutt

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I’ve touched on this before but I am finding it honestly amazing how many people – from all aspects of live, and from all corners of the World – are finding my blog and getting in touch with me about it.  Quite often I find out that these people are doing their own thing to try to raise awareness of, and help, rare diseases and Rare Disease Day.

Sometimes those very same angels have not only been doing it waaaay longer than me but also do it by writing about professionally.

This is one of those people.

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The Neurology of Angels: Every day a choice must be made between saving one child and treating thousands.

I have worked in industry and government and research, and there are two important things I’ve learned about health careKrista Tibbs systems. The first is that there is no evil mastermind; there are merely humans making hard decisions with the stories they have heard. The second is what Rare Disease Day supporters already know — that stories are built by the people with the loudest voices. So I wrote The Neurology of Angels to give rare diseases another voice in the dialogue.

I appreciate that Jay offered to share my story, and I wanted to take the opportunity to highlight something many people don’t understand about the uniqueness of rare diseases: that is, how the complexity and elusiveness of research and the long, costly process of developing a treatment can shape a person and her family as much as the disease itself. This experience is illustrated in the book when a clinical study becomes available and Sera’s response is not what her mother and her best friend expected. Excerpts are included below.

Thank you for supporting Rare Disease Day!

- Krista Tibbs (author – The Neurology of Angels)

Excerpts from The Neurology of Angels

Elizabeth told Sera, “There’s a doctor in Boston working with a company, and they’re looking for people with VWM to try a new treatment.” Sera didn’t say anything. “This is your decision. I’m not going to talk you into anything.”
Sera looked away, as if ashamed. “I want to do it, but I’m afraid.”

Elizabeth was confused. Sera had never been afraid of dying. What had changed, and where had she been while it happened? “Sweetie, you won’t be the first person to take the drug. A lot of people use something like it already to prevent strokes.”

“That’s not what scares me. What’s the worst that could happen; I’d get a terminal illness?” Sera smiled weakly and turned her eyes back to her mother. “I’m afraid that it’ll work.”

Elizabeth was stunned, at Sera’s words and at her own reaction. She felt a white flash of anger, hotter than she’d felt when her husband was taken from her, hotter than when Sera’s symptoms manifested despite Elizabeth’s belief in miracles. She’d been plenty angry at God in her life, but she wasn’t prepared for this fury toward her own daughter. She wanted to yell: What is wrong with you? Don’t you love me?

Tears formed in Sera’s eyes as she watched her mother’s speechless response. Elizabeth’s anger drowned under a swell of love and understanding. She hugged Sera tightly. “Fear of the future is the plight of us mere mortals.”

Lexi didn’t understand, either. Sera tried to explain. “When every day is a bonus, you notice each little bit of it. When I wake up and can feel my toes all warm in the blanket and wiggle them just by thinking about it, I know it’s going to be a good day. I’m happy just because I can zip my jeans, and tie my shoes, and paint my fingernails, and brush my teeth. Not just that I can squeeze the toothpaste and hold the toothbrush, but that I can feel the weird way the air gets cold afterwards…I want to fill every day with experiences. I want to dance or sing or play music or smile or twirl or just stretch. Because tomorrow I might not be able to tell my brain to do any of that…So I guess I’m afraid if I get better, I won’t notice any more how good it feels to stretch. You know?”

Lexi nodded slowly. Sera had spent her whole life as a sprinter, and now she might have to run a marathon.

Later, Sera told Lexi, “When I heard the drug was called Lexi-VM, I had to do it. Everything happens for a reason.”

“Okay,” Lexi said. “But don’t blame it on me if it works and you have to go to college and actually study for a change.” They laughed, sharing a future for the first time.

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The Neurology of Angels
Friction Publishing
Publ. Date: 2008
ISBN: 978-0-9818803-0-3 15ozs.

Amazon (US)

Amazon (UK)

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If you are affected by a rare disease, or you know someone who is, please feel free to contact me if you would like to share your experience on here as that would be more than welcome!

http://www.rarediseaseday.org/

@rarediseaseday #raredisease

An Open Letter – a Rare Disease Day post

Rare Disease Day 2012“The price of greatness is responsibility.” ~Winston Churchill

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Below is a copy of a letter I sent to Peter Robinson, the First Minister for Northern Ireland.  In it I hope that I simply reminded him of his responisbility as a political leader.

… and, in case it doesn’t work on him, I also sent it to Martin McGuinness – the Deputy First Minister, every MLA for Newry & Armagh, the Mayor of Armagh City, the Deputy Mayor of Armagh City and each and every local Councillor for my area.

Maybe one of them will realise, to use another quote other than Churchill’s, that with great power comes great responsibility. If it is good enough for Spider-Man then it should be good enough for the men and woman who have the power to change our lives for the better … and rather than bickering about party politics, or which religion is better in a country so small, they can actually DO something!

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Peter Robinson

First Minister

The Northern Ireland Executive

Parliament Buildings

Ballymiscaw

Stormont

Belfast

BT4 3XX

 

23 February 2012

 

Dear Peter,

Rare Disease Day 2012, the launch of the Northern Ireland Rare Disease Partnership, and the UK rare disease plan

I am writing to you as my First Minister in advance of international Rare Disease Day 2012, which this year takes place on the 29th of February. On

that day a new organisation, the Northern Ireland Rare Disease Partnership, which champions the interests of patients with rare diseases will be formally launched. In addition, the Patient and Client Council will be publishing a report on experiences of obtaining a diagnosis of a rare disease in Northern Ireland will be launched.

I understand that you have been invited to an event at the Pavilion on Stormont Estate at 11:30am to 2.00 pm and I urge you to attend this event (see bottom of the letter for further details).

I am someone who lives with, though tries not to suffer from, a couple of rare diseases – namely congenital myasthenic syndrome and congenital muscular myopathy – so personally understand just how all consuming such diseases can be in someone’s life.  Rare Disease Day, simply by raising awareness of the fact that there ARE these debilitating illnesses out there, along with the Northern Ireland Rare Disease Partnership and the Patient and Client Council, will bring hope where previously there may have been none.

The Department of Health, Social Services and Public Safety has committed to working with the UK Government and the other devolved  administrations to develop a UK plan to facilitate research and to improve health service provision for people affected by rare diseases – some 100,000 people in Northern Ireland alone. The plan was originally due to be launched for public consultation before the end of 2011. It was then announced that the plan would be launched early in the New Year. I am concerned that further delay to the launch of the public consultation could hinder the momentum of the work that has been done so far, and result in further delay to the much needed plan to improve the lives of people living with rare diseases in Northern Ireland.

The theme for Rare Disease Day 2012 is “solidarity” and the slogan “rare but strong together”. This reflects the reality that even though there are

over 6,000 different rare diseases, these will affect 1 in 17 people in Northern Ireland at some point in their lives; and those affected face common problems in getting the care, support and treatment they need. A report, which the Patient and Client Council will be launching on Rare Disease Day, highlights some of these issues in Northern Ireland:

·        29% of patients wait between 1 and 5 years for a correct diagnosis and over 20% wait over 5 years;

·        34% of patients are misdiagnosed – 20% of which received inappropriate treatment as a result;

·        Patients have to attend multiple appointments with different health professionals to obtain a diagnosis and it is frequently a battle to do

so;

·        57% of people caring for a person with a rare disease do so for more than 20 hours a day;

·        Over 40% of patients described their experience of the health and social care service in Northern Ireland as “poor” or “very poor”, and nearly a quarter described it as “average”. Only a third of patients described their experience as “very good” or “excellent”;

·        Patients also reported feeling ignored by doctors, and that there is a lack of information and support for rare disease patients.

An effective UK  plan for rare diseases, fully implemented in Northern Ireland, would help address these issues.

I request that you please write to the Minister for Health, Social Services and Public Safety to push for the launch of the public consultation on a UK rare disease plan without further delay. I hope that you will also attend the event at the Pavillion on Rare Disease Day.

Looking ahead, I hope I can also count on your support to ensure the effective implementation of the plan in practice to make a real difference to the lives of people living with rare diseases in Northern Ireland.

I look forward to your response.

Yours sincerely,

Jay Faulkner

 

 

Please note:

For more information on the launch of the Northern Ireland Rare Disease Partnership and the Patient and Client Council report, please contact

Sarah McCandless at the Patient and Client Council: sarah.mccandless@hscni.net 028 9032 1230.

 

If you require any further information about the Northern Ireland Rare Disease Partnership, please contact the Chair, Christine Collins:

nirdp@fastmail.co.uk 07843256442.

 

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If you are affected by a rare disease, or you know someone who is, please feel free to contact me if you would like to share your experience on here as that would be more than welcome!

http://www.rarediseaseday.org/

@rarediseaseday #raredisease

 

Rejection mindset

Not that I am trying to imply that I have been writing or, more correctly submitting my writing, for a long time, but when I first started doing this – back in 2009 – rejections were mostly of the form variety.

I’ve noticed that, in the last year, or so, that something has changed.  Rejections have become ‘nicer’, if that is a suitable word for someone telling you thanks but no thanks for your creativity, of course.

Joking aside I actually DO think that rejections can be nice; I’ve never taken one personally, at least not so far, which may be because I also run a couple of publications myself so realise that even if my piece doesn’t suck … sorry but I am not yet able to accept that my writing may actually be good, but will admit that it isn’t bad, from time to time … there are only so many pieces that any one publication can use at any one time.

Anyway – rejections not being form but, rather, tailored to my actual submission seems to becoming more of the norm.  I’m not sure if it is because I am submitting to a better class of publication/publisher, or my work is actually worth an individual response but, whatever the reason, there are times when a rejection is nearly – though never actually AS – as good as an acceptance.

Case in point:

It was well written — with the writing hitting high poetic notes towards the end — there was an especially large number of submissions during this round. Nevertheless, please know that there were several editors who loved your work. In the end we could not agree to include your story in our next issue. We hope you find a home for it. And Soon.

That response, despite the fact that my work was rejected, is a very positive one – especially the part about the high poetic notes.  I firmly believe every word in that rejection response and am grateful for it. I know that my work was read, it hit some of the right chords, some people even liked it … it just didn’t make the cut.

And, you know what?  That’s ok.

My writing won’t be suitable for every market out there, or even for every market that I submit too.  My stories won’t connect with every reader and, even if they do, it may not be for a positive reason.  At the end of the day, though, I have realised that even though I never took a rejection letter – form or otherwise – as personal I’ve moved even further from that mindset.

I don’t even see it as a rejection at all, anymore, just not an acceptance.

And, you know what? That’s ok too.

The Pen – a Rare Disease Day post

Rare Disease Day 2012

Rare Disease Day 2012

“Beneath the rule of men entirely great, The pen is mightier than the sword.” ~Edward George Bulwer-Lytton (1803-1873)

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I was wondering what else i could be doing to help raise awareness of Rare Disease Day 2012.

I mean I know that I am telling people … pretty much for the first time ever … about my own experiences of having a rare disease (or two); I’m doing this blog, and letting people know about it on Twitter and Facebook; I’ve written a piece that will be used as part of my work’s Health and Wellbeing section, being sent out to all staff on Wednesday; and I’m attending the launch of the Northern Ireland Rare Disease Partnership, and the Patient and Client Council report outlining the findings of a survey conducted into the experiences of obtaining a diagnosis of a rare disease in Northern Ireland being held at Stormont on the 29th itself.

But I was wondering what else I could do?

Then it hit me.  I was sitting in front of my computer, drafting a post on this blog, trying to figure out what I could do … I could use the technolofy that was – literally – at my fingertips.

So I did.

I just emailed a tonne of influential people.  This includes the First Minister and Deputy First Minister of Northern Ireland.  It includes the MLAs for my constituency. It includes the Mayor, Deputy Mayor and councillors of my local council.  It includes Stephen Fry.

… that last one is purely because it is Stephen Fry, of course!

Now, I am not sure if any of those worthy people will even read my email, let alone actually DO anything thereafter but if they do read it, and it sparks even the slightest interest, they may decide to do something and that, my friends, may just make a difference.
And that is surely worth a while of my time?

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If you are affected by a rare disease, or you know someone who is, please feel free to contact me if you would like to share your experience on here as that would be more than welcome!

http://www.rarediseaseday.org/

@rarediseaseday #raredisease

Inexplicable – a Rare Disease Day post.

Rare Disease Day 2012

“Could a greater miracle take place than for us to look through each other’s eyes for an instant?” ~Henry David Thoreau

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I’m going to bring you another guest post, today – one that, to be honest, has left me feeling rather upset but that is to be expected … when you read the words, and see the photo, you will be affected too -  and it is from someone that you’ve already met; Mercedes is a wonderful person – ask anyone that has any dealings with her and you’ll get told that same thing – but, unfortunately, her family have had more than their share of misfortune.

However they – and she – don’t let that define them but, rather, to simply shape them.  I have nothing but the humblest of respect and admiration for them.

These are her words:

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The Cyclops had alobar holoprosencephaly.  So, incidentally, did Cy, the Cyclops Kitten.  So did the famous Cyclops shark.

So did my daughters.

I was (happily) carrying triplets when I learned about this disease.   Holoprosencephaly is fairly common.  It means that the forebrain of the embryo doesn’t divide as it should.  The result is a single lobed brain structure that causes some developmental issues.  Some aren’t very severe at all.  The brain may be absolutely normal, close to.  There may be cleft lips, or small facial deformities.  Things you can live with.  Things you can manage.Seija and Luke's hands

Alobar Holoprosencephaly, though, is a whole different ball game.

In this case, the brain doesn’t divide into two halves at all, but stays together as one whole.  Since there is only one section of the brain, there is only one optic nerve.  With only one optic nerve, there is only one eye.

You might be wondering if my twins had only one eye.  The answer is yes.  One passed away too early to tell.  Her identical twin sister, however, was born and lived for five hours.  She was inexplicably lovely.  It’s funny how a face with such imperfections could be so perfect.

The third triplet was in her own separate sac.  This means that she wasn’t identical to the other two.  She’s healthy, she’s happy, and protected from the anomalies that took her sisters.

We’ve had our share of rare diseases in our family.

I’m hoping that there aren’t any more.

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Mercedes M. YardleyMercedes 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/

 

 

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If you are affected by a rare disease, or you know someone who is, please feel free to contact me if you would like to share your experience on here as that would be more than welcome!

http://www.rarediseaseday.org/

@rarediseaseday #raredisease

Heroes & Legends

So, it was our first family outing to a sci-fi/ fantasy & comics type event, at Heroes & Legends today and – first things first – I am KNACKERED!!!  We got there at 10am and are literally just home now at 8:30pm … when you consider that includes two young children, who were GREAT all day long, you should realise just how big a day that is.

We all had amazing fun which was a lot to do with what was there and how it was run – for example the roaming characters was a GENIUS idea as it kept everyone interested all day as you never knew who you’d bump into next.  One poor little kid came out of the lift and bumped right into an Orc (from Lord of the Rings) and burst into non-stop screams and shock; yes, I laughed.  My boys, of course, were cool with most of the characters (high fiving Orcs and putting a really scary Joker in his place, for example) though the sudden appearance of an alien from Alien, in the dark, did shake them both a little … my guys recovered pretty well and Mackenzie ended up hugging the critter! :)  Another cool reason that the event (it wasn’t a convention, though I heard people grumbling about that fact, but I don’t think it ever purported to be) worked was the venue – W5 is a cool place at the best of times and when some of the floor space is taken up with the sort of greatness that Heroes and Legends brough to play it only made it better … being honest here, without the W5 stuff it would have been difficult to spend more then a couple of hours there just on the H&L event.  I like to think it was genius planning on their part ;)

Amazing what a VIP pass around your neck achieves – people thought that I was special (of course those of you that know me KNOW that I’m special).  I was actually mobbed by a bunch of kids who kept telling each other that I was cool, and look at the hair; Colin Baker (former Doctor Who) thought that I was part of the event, and asked why my badge was VIP and his ‘just’ had his name; I even got asked by Captain Jack Sparrow to join him as I was already mostly pirate anyway! :)

I have to admit that I am not really one to spend money, normally, to get someone’s photo and autograph – no matter who they are – and today wasn’t really any different.  If I had done that for the people that I wanted to, today, I would have been a whole lot lighter coming out than going in.  However I did get to simply spend some time chatting to some very cool people:

Claudia Christian (Babylon 5) is extremely striking, moreso than I was honestly expecting, but is also very interesting too.  She didn’t just talk about her old roles but about her current interests and potential books (Egyptology and Black Holes – pretty left field :) ) … she also loved Mackenzie’s politeness and his hair :)

Jennifer Blanc-Biehn and her husband, Michael (yes – he of Terminator, Abyss, Aliens, etc) were also not what I was expecting – they were laid back and simply nice.  Found out a little about their new movie, which sounds cool, and chatted about the Abyss – a joke may have been made that it isn’t often that guys spend more time talking to Michael than Jennifer but, hey, I’m comfortable in my own sexuality not to worry (… he is cute though LOL!).

Colin Baker was simply a gentleman, through and through.  He spent time talking to – not at, or down to – my four year old about many things, some of which actually happened to be Doctor Who … wasn’t much because I don’t actually let my kids watch Doctor Who, just yet, as I think that it is too scary for them and Colin’s Doctor was one of the darkest incarnations so not for another few years.  He had a book of short stories with him, which I picked up and got autographed … you see I don’t mind paying for something tangible that ends up getting autographed – plus it was Doctor frikkin’ Who! ;)

Declan Shalvey – a comic artist for Marvel and DC – was probably the highlight for me.  As an admitted comic book nerd (or geek, never sure which) I was there for the comic book stuff, and Declan just happens to be someone whose work I love but also an Irishman who I’ve chatted to, a little, on Twitter.  It was nice to finally meet him and chat for real – he is as nice a guy as he is talented.  He definitely isn’t cheap with his time and talked for ages with me, but also with Mackenzie who isn’t your typical four year old as he has quite a good knowledge of comics (I think it surprised Declan a little) and loves to know how things work – so asked Declan how he did things.  When Declan asked him who is favourite superhero was – expecting, I think, a Spiderman or Batman response – he was a little shocked to hear Black Knight in reply.  Mackenzie did get a lovely piece of art from Declan though – not many four year olds have a private commission from a Marvel/DC artist.

I think that the highlight, for the boys, has to be the characters and costumes … both of them were almost giddy with delight when Indiana Jones spent time with them but when Spiderman stopped to chat their little brains melted.

They are now exhausted and asleep – but still buzzing about the day and oh so happy.

That, you see, is a great, great day.

GRAVITY by Melissa West (October 2012)

 

 

 

 

 

GRAVITY by Melissa West (October 2012)

BLURB:
In the future, only one rule will matter:

Don’t. Ever. Peek.

Seventeen-year-old Ari Alexander just broke that rule and saw the last person she expected hovering above her bed – arrogant Jackson Locke, the most popular boy in her school. She expects instant execution or some kind of freak alien punishment, but instead, Jackson issues a challenge: help him, or everyone on Earth will die.

Ari knows she should report him, but everything about Jackson makes her question what she’s been taught about his kind. And against her instincts, she’s falling for him. But Ari isn’t just any girl, and Jackson wants more than her attention.  She’s a military legacy who’s been trained by her father and exposed to war strategies and societal information no one can know – especially an alien spy, like Jackson. Giving Jackson the information he needs will betray her father and her country, but keeping silent will start a war.

Pre-order from Amazon:
http://www.amazon.com/Gravity-Melissa-West/dp/1620610914/ref=cm_cr_pr_product_top

Add to Goodreads: http://www.goodreads.com/book/show/12844575-gravity

GRAVITY by Melissa West (October 2012)