The Blog I never wanted to write.

Why the title? Well first off, this blog is about reviews and the effects they can have on a writer’s craft and confidence.

I should start by saying (hopefully non defensively) that I have developed a thick skin and I value critique that I can learn and improve from. On my soon to be closed (March 22nd) favourite writing site WRITEON, I have enjoyed interacting with close to a hundred other writers – Since joining in August 2015 I have got into the habit of writing something every week, mostly through the weekly writing challenges WO does/did. I got so much from them – not just a disciplined routine but valuable critique and people pointing out where I missed commas or typo’d a word or three. I always appreciate that.

My writing philosophy on there was to always comment on the stories/chapters that I read and saw merit in – sometimes I would encounter a story that I just couldn’t get through. In that case I stopped reading and said nothing. My mother always taught me if you can’t say anything nice, say nothing – but honestly 95% of the time I found stories I could say something constructive about and as a qualified teacher, I believe in helping people to better themselves and accentuating the positive. So if I saw a good idea but the writing wasn’t too hot, I would compliment on the story and offer some constructive critique on the structure. Most people have the ability to improve and in my experience on WriteOn, I never saw anything to contradict that, when a writer was willing.

This brings me to Amazon where my philosophy was the reverse. On Amazon it’s a case of who is reviewing my books and good or bad, my policy is to not reply. If I thanked all the 4 or 5 star reviewers (which might sound egotistical) then I would have to also respond to reviewers giving me bad reviews and there is no capital in that, especially if you get (which I did) a one star review saying ‘I didn’t like the sound of this book so I never read it.’

What can you say to idiocy on that level? That was for my book FOREVER TORN and it got lost in dozens of good reviews so I shrugged and moved on, after briefly contemplating that ‘there is always one.’ Actually Amazon is rife with trolling – sometimes it appears if a very well received book (I’m talking about other authors, not mine – I still haven’t topped 60 reviews on my most popular book) has mostly 4 or 5 stars, some … individual will feel it their troll’ly duty to ‘take them down a peg or two.’ – I have seen one star reviews stating that although the book was good, Amazon delivered it late so they were reviewing it with a one star! That is among the most sane and non malicious one or two star reviews.

Many writers (I’ve seen them on WriteOn, other writing sites and Amazon) take even well meaning constructive reviews very personally. Some rant and respond to even the most well intentioned critique and are hurt, pissed off and dejected by this. I myself have a much thicker skin but on a very few occasions when my replies get a bad reaction (on writing sites. On Amazon my rule is never to give a review unless I can give a 4 or 5 star) I’ve backed away and left those writers to their own devices.

However the bulk of writers know they can only improve from getting help and advice – but there is helpful critique and there is mean spirited critique. As Amazon is mostly readers leaving reviews rather than the workshopping of sites like WriteOn, there are many thoughtless or even malicious reviews left.

My own rule of thumb is that if a reviewer leaves me a 1-3 star, explaining why they didn’t like my book, having read the entire work, I just shrug it off. After all not everything is for everyone and sometimes my non linear narrative techniques don’t appeal to people who like a more straight-forward read. That’s not to say that I use these techniques all the time but I do in several of my books such as THE UNSEEN MAN. Set in a superhero universe it’s told almost entirely in flashback and there are flashbacks within flashbacks as the universe is established. The narrator is in a situation in his present day – injured and speaking of having ‘hours to live,’ he records his story, first talking about his world, then his origin and bringing the reader up to date. The final chapters lead up to the events that put him in his predicament and it’s a pretty epic read – one I am very proud of. It’s followed by another hundred or so pages of annotations which explain a lot of the references and influences – there is a lot of comic book/pop culture within the pages of The Unseen Man and it’s part comic nostalgia and part adult (non sexual) sci-fi/fantasy epic.

Up until a few days ago it had two reviews on Amazon.com. Both 5 stars. Then a third person reviewed it and gave me a one star review. If he had read the book and explained why he thought it was bad, then fair enough – though my rating is now 3. something and therefore the book will be harder for people to find on Amazon – well thems the breaks.

What annoyed me is that this person got barely into it (my chapters are very short so it doesn’t take long to get to the meat of the story) and gave up. Again that’s fair enough – I’ve occasionally not been able to get into a book though generally I do give it at least 50 pages or 3-4 chapters whatever comes first. I know as a writer that it sometimes takes a while for a book to get going and some of my best reads were ones I felt had confusing or luke warm starts – I’m the same with tv shows. At least 8-10 episodes. My brother who is more impatient told me FRINGE was crap – I found the first 13 episodes solid but not great, but then after that it was one of the best shows ever – but not if I’d bailed during the set up/world building. Believe me THE UNSEEN MAN gets rolling a lot faster.

So why did this particular review prompt me to break my dignified review silence that’s been in place since 2013? Well, not only was it overly harsh for not even barely scraping the surface of a book (Fair play – you don’t like the start of something – walk away or give a 3 star to indicate mediocrity.) but it affected the ratings which affects the ability of people to see this book which means I lose money. Most of all its the principle – I have become heartsick of online message forum trolls in the last year or two and while I personally believe in my path to being better known and that one day THE UNSEEN MAN and other works will make it, it’s the principle of the thing.

Not every writer (and I know hundreds – there are millions) can take a mean spirited unnecessary review with thick skinned minor annoyance at best. Some will despair and give up or it will affect their bottom line. Imagine if someone walked into a cafe, sniffed a cake and started screaming ‘Don’t eat here – it tastes disgusting and will probably poison you.’ Then imagine the person screaming that was there constantly and you couldn’t remove them.

We writers tend to discuss these things from time to time and we know that a bad review has a lasting effect – it can drive a writer to up their game if the critique is constructive and well intentioned or it can ruin confidence or sabotage the future of a good book, all because of thoughtlessness or malicious intent.

‘If you can’t say anything nice (or helpful) don’t say anything at all.’

Jason Greenfield

Post Inauguration Blues – Despair VS Hope

1/20/2017

We live in an interesting time. For the first time in my three score and ten years, I see a world torn between despair and hope, wrenched between hatred and acceptance, divided by wealth and poverty. The United States of America is no longer united. We are now a country openly divided. At this time, no states are threatening to secede from our nation, primarily because the people of the states are divided as well, but who knows what may happen in the future! Some individuals threaten to move to other countries; but the truth is, the world is equally divided and there is nowhere to go that will give us the love and peace we desire. We need to accept and live with what we have chosen but remain vigilant that our rights remain intact.

The Electoral College elected the President of the United States. (The Electoral College consists of 538 electors. A majority of 270 electoral votes was required to elect the President. Each state’s entitled allotment of electors equals the number of members in its Congressional delegation: one for each member in the House of Representatives plus two for their Senators.) This group of individuals is selected to represent the People and is used as a check and balance issue to insure that the larger states would not control the election. In this election, Trump lost the popular vote of Americans by almost three million votes.

We are torn. Dissention and rioting filled the streets and the airwaves during the inauguration. Women the country over and the world over have marched in protest of the new President and the changes they believe he might bring. Even before the votes were cast, the People were divided. Immigration, abortion, race, fear of those not in your approved circle, climate change, gender inequality and a severe financial divide were but a few problems that faced this country.

A few days later, I fear the divide is growing. An article I recently read stated that scientists, engineers, and computer experts are racing to salvage information kept on government servers. It was stated that the information has been transferred to Europe and Canada where it can be compared to information that the new administration puts on the servers. It appears that those communities distrust the President’s administration and believe that valuable data will be lost and new data will support the new administration’s agenda. Subsequent reports stipulate that a lot of the data has changed. This could be because it is customary for a new administration to present their agenda, but others believe that it is a more subversive motive.

Mr. Trump, before he became President, said he was going to “drain the swamp” in Washington. Now President Trump has appointed more billionaires to government positions than ever before. The women he wants appointed as Secretary of Education is a billionaire with no experience in education. She owns businesses that profit by collecting debts from students in default of college loans. She gives freely to causes that attempt to put education in the hands of church run schools and for profit agencies. During her confirmation hearings, she answered questions submitted to her that showed she had little understanding of legal and moral issues facing education today. I was truly distressed when I discovered that her family had donated freely to many of the Senators that will vote on her appointment. I was equally shocked to learn that her brother founded Blackwater.

She isn’t the only appointee that worries me. Putting a former Goldman Sacks executive in as Secretary of the Treasury is an interesting choice. Banks bankrupted this country a few years back and now will be determining government policy pertaining to out financial institutions. I could go on with other appointees, but I think you see where I’m going…

But, let’s look at the other side of the coin. America, and it seems many other countries, are fed up with the status quo. Our governments are being challenged. People are concerned that the governments are not listening. The People are making drastic choices and voting in politicians and policies because any change is considered better than maintaining a failed system. It is time for our political parties to look to and listen to the People.

America, the United States, is one of the most revered countries in the world and needs to determine the future direction it will be taking. Will we be: “We, the People”, or will we be: “we the divided”? The doing model I spoke about before is a determining factor here. Putting billionaires in charge of our countries could provide a path to fiscal responsibility but it could also be a path to social collapse and devastation. Do we need more? Do we need a new world order?

The grand experiment is on. Will we succeed or move back to the dark ages? Only time will tell. I hope to remain vigilant and take note, and react if and when things look dark and give praise when things go better.

We ask that you keep those who are less fortunate in your prayers and send those suffering from disease your wishes for better health.

by Nancy P.S. Hopp

OMP Admin Note: Nancy PS Hopp is a writer and OMP Network member – one of a group of networkers who will be blogging on a regular basis on various causes and issues.

Nancy is a writer I encountered on the writing site WriteOn. I was impressed with her thoughtful and mature flash fiction stories, often based on her own experiences and background and asked her to join the One Million Project network, as a valued member.

One of those stories or a brand new one will appear in the guest writer section of the upcoming fourth volume of the anthology BITE SIZE STORIES series.

24 Stories for charity and entertainment. Stories Nine and Ten.

Continuing my blog series covering the 24 stories in the original OMP anthology, let’s take a look at the 9th and 10th stories.

One of the aims of the collection was to present ‘something for everyone,’ and so our tales range from differing genres to different story types, including scripts and non fiction.

Rhian Rawling’s TASTE is one of a couple of non fictions in the collection and for my money it’s the most poignant story, dealing as it does with the tragic loss of Andy, Rhian’s first husband.

The above makes it sound like TASTE is going to be dark and depressive, but actually while sad, it also manages to be witty, endearing, funny and profound in turns. TASTE is about dealing with loss and at it’s heart it’s inspirational and an amazing story of a resilient woman.

Rhian was helped a lot by the WAY Foundation (Widows And Young people) and continues to be associated with them to this day – and we intend to do a future spotlight on this fantastic group in the future.

Everyone copes with grief in very different ways – for Rhian, her relationship with Andy was very much about shared experiences – food was very important to them and without him, she experienced a dulling of the senses. TASTE is but one chapter in a book I’m hopeful will be completed and explores how those senses gradually came back to life, with love and care from friends and family.

‘Anyone that tries to tell you that food is merely a tool for survival is lying. From my gently undulating curves it’s obvious to even the most casual observer that matters gastronomic have been elevated significantly in my list of priorities. Andy shared my passion for good food although his toned physique betrayed fewer signs of indulgence.

When we first met we had both realised in a matter of days that ‘this was it’. We both floated about with unending grins which probably looked more like an advanced case of tetanus to anyone who didn’t know better.

We also embraced hedonism with all the energy we could muster. Weekends would find us squirrelled away deep in the heart of the East Midlands. To us, however, our less than palatial environs were transformed as we threw the mattress on the floor and transformed the bed base into a table top groaning with edible delights.

We had both just left University and begun our first jobs. With the arrival of our earliest wage packets came the possibilities of escaping the years of surviving on basic student fare. Whilst we reclined on our re-located bed we sipped champagne and nibbled on prawns, celery, Stilton and each other.

We fed each other. We revelled in not having to survive on toast and unending vegetable chillies. Throughout our time together we maintained our new found zeal for cooking. Mealtimes were all about discovering new flavour combinations together, sharing easy conversation and usually a fair bit of alcohol as we conjured up another taste sensation.

Cooking for someone can also be a very intimate expression of affection. If you have ever arrived home after a crappy day at work to be greeted with a hug and a home-made casserole you know you are truly loved.

Even when we were living in a tiny Islington flat with only 1 saucepan to our names I would labour for hours in order to “rustle up” a Mousakka for my love. The endless round of washing up said saucepan between each stage melted away with the satisfying silence that descends when your culinary offerings meet with the total approval of your partner.

With Andy gone the joy of cooking had disappeared. In the first terrible days of numbness I couldn’t face eating at all. This wasn’t some foot-stamping cry for attention it just didn’t feel right to be nourishing my body when I could no longer see the point in carrying on.

They say that anyone over 20 can remember where they were when the planes crashed into the twin towers. Anyone over 30 can remember where they were when Princess Diana died and anyone nudging pensionable age can remember when Kennedy died. So why is it when the loss is raw and personal to you it’s amazing how little you retain?

They say that on the point of death the last sense you are aware of is hearing.

“They” have a lot to say for themselves don’t they? When the phone rang I have no recollection of anything beyond the words I didn’t want to hear. I was drowning in clichés. Speech was sucked out of me, my vision blurred and I vaguely remember shaking but beyond that I was numb. Not numb as in a “filling at the dentist” way but numb as in standing behind myself, merely observing a series of unconnected actions.

One by one my senses had shut down and yes, hearing was the last one to go.

I don’t claim to have any answers to how you should deal with losing a partner. I can only give you my truth. Despite what “They” tell you there is no prescribed list of hurdles to get over or steps to take. It isn’t a straightforward journey where you pass from happy to devastated and back again. You don’t dutifully work your way through the 5 stages of bereavement and emerge victorious. There is no right or wrong way to
grieve and every version is unique. What I can offer is an insight into my journey and what I have found helpful. If all else fails remember that for centuries people have been dealing with loss and still haven’t cracked it. If that isn’t licence to find your own way and trust your own instincts I don’t know what is.’

*

Story Ten is one of mine – THE GOLDEN LEGION is two things. It’s a self contained story set in a fantasy land that is half way between the Robert E Howardesque era of Conan the Barbarian and half Roman Empire and secondly it is the large first chapter of a novel.

The original concept of SOLDIER OF THE KRUUL (the first of a planned trilogy) originated circa 2000/2001 and that first chapter had a definitive purpose. Having written mainly sci-fi and comedy up to this point and being a Conan and Lord of the Rings fan, I challenged myself to write the kind of in depth, vividly described fantasy that I enjoyed reading.

One of my skills is world building and this story is full of that – yet, the main character for my intended trilogy doesn’t even show up until the second chapter, but his appearance and motivations rely heavily on the events within the first chapter. Many of the concepts, background and feel of The Westerlands appear here and really, it’s an in depth scene setter.

But also self contained – when I was looking for old stories of mine to put into this collection, the first chapter of Soldier (originally called CLAN JAGER) stood out. It only lacked a name, which I gave it. Enjoy the opening of … THE GOLDEN LEGION and please check out the rest and Rhian’s TASTE in the ONE MILLION PROJECT, available on Amazon.

‘Fierce winds tore through the makeshift camp that grey dark afternoon; tearing, buffeting and lashing out at anything not securely tethered to the ground. Inside the inadequate lean-to’s and hastily assembled canvas men and animals shivered, wet and miserable against the raging of the elements. These men, the finest of the Seventh Legion; trained for war under all conditions could nevertheless do nothing in the face of the storm’s power except wait helplessly for its eventual abatement.

A dark grey miserable afternoon – par for the course in these rocky wastes of Durva. Imagine a land devoid of flora and fauna, bereft of all the bounties of nature. Picture a region almost one hundred miles in square width consisting only of dull sedimentary yellow greyness and lashed frequently by the full furious rage of the heavens.

The lay of the land took on two distinct features once one passed westwards from the mountainous fjords of Norstad. On crossing the western borders of that coolly green land, one came abruptly on the grey ash like plains as they appeared as if by some sorcerous trick of nature. Some say that the whole region of Durva was scoured by a magically induced volcanic eruption back towards the dawn of time.

Whatever the reason, there was a clear delineation along the borders of Norstad and to the south Petaland and Gunna-Tabal, that precluded all thought of invasion from these more fertile lands.

No invasion and no need for conquest, true; but some thirty miles over the border past the rocky ash plains, the Iron Mountains rose grim and foreboding. Within the mountains dwelled the numerous tribes of Durva – small, barbaric, given to petty squabbling and feuds, but also with the disconcerting habit of drifting south and east towards more hospitable lands … unless checked. While it was a fact that few of the tribes actually dwelt far from the enclosed safety of the mountains, it was also undisputed that all of them could be mobile and speedily arrive in large raiding parties at the border within a day. So while no civilized nation had ever seriously thought to annex the Wastes of Durva, frequent armies of pacification were a necessity; hence the presence of the Seventh Legion.

A thousand years past, the three neighbouring nations had been intermittently troubled and either had to provide border patrols or suffer raids, but since that time the legions of Kruul had taken it upon themselves to send armies of pacification every two to three years. After all Norstad was an ally and most of Gunna-Tabal was an occupied part of the Kruul Empire. Petaland could and would have to fend for itself along its northern border.

Presently the thousand men of the seventh legion, sent on just such a mission of pacification were encamped some twenty miles into the ash plains and not ten from the Iron Mountains. Travelling slowly but steadily as a legion tends to do on full mobilisation, they had been only two days in Durva and yet to see a single tribesman.

The Seventh, also known as the Golden Legion (as the shields, helms and armour tended to differ between legions to give each a distinctive identity) was the pride and joy of the Empire – alternately known as The Mighty Seventh. That they were here in Durva on a campaign of pacification showed none of the demerit it might have, had a lesser legion been sent in its place. The sight of the golden Seventh marching through Norstad was meant to send a signal to all who witnessed them in their glory.

On the one hand that message to Norstad was ‘We send our best to fight in your interests,’ but on the other hand it was also a show of strength and prestige.

Like all legions, the Mighty Seventh was divided into ten cohorts of exactly 100 men apiece. In addition to the fighting men and their commanders, a staff of 50 or so cooks, servants and sundry personnel completed the full complement of the Seventh along with several hundred horses (Out of 1000 fighting men, 200 formed an official cavalry but more than that number were trained to take the place of the fallen in battle and could easily convert from infantry to horsemen on short notice), carrier mules, wagons and a small pack of hunting dogs. The dogs were at present baying as they lay together under canvass shivering with the cold.

On the furthest side of the camp from the animals, a larger, sturdier tent had been erected and within this awning the Commander of the legion and his staff stood grouped around a field table engaged in animated conversation.

‘Despite this abominable weather we have made good progress my lords,’ a hulking greybeard was saying.

Opposite him stood 3 younger men aged in their early to mid thirties, the foremost of which stood perched against the edge of the makeshift room, his fists knuckle down upon the table, flaxen hair falling across his tanned brow.

This man was Sol Jager, Commander of the Seventh Legion these past eight winters and oldest son and heir to the second most prominent family in all the Empire of Kruul. To list the military accomplishments and accolades heaped high upon him would take too much time to recount. Sol Jager who had killed his first foe man at the age of fourteen, who had been given his first command as a mere youth of eighteen … the same Sol Jager who had slain the murderous ‘Giant of Petaland,’ in a champion vs. champion pit fight; who had repulsed the corsairs of Kilaman with but one remaining ship against a fleet. He who distinguished himself along the East Akani frontier and had taken a near fatal blow in the stead of Prince Helsing.

Now in his thirtieth year and at the height of his prowess, Sol Jager was here in the Wastes of Durva on a mission that was … totally futile!

So his thoughts ran. If the truth be known, the Commander of the Mighty Seventh would rather have remained home with his beloved wife to await the birth of their first-born. Any legion commanded by a half way competent commander could be here in the place of the Seventh. Sol knew this as he also knew the reason for their presence was purely political … a motion passed by those in the Senate that believed in overt gestures of power and prestige to be displayed in front of ‘allies’ from time to time, needed or not. He was but a simple soldier and duty compelled him at all times especially when the Emperor personally requested he lead this punitive expedition.

General Ourbos coughed slightly and his attention returned to the meeting.

‘As I was saying my lord,’ the older man continued ‘The storm is predicted to cease within a day and we will be able to resume our pace.’

Sol nodded ‘Select and prepare native scouts to set off on the morrow. Let them survey the different approaches so we might judge which is the least arduous.’

The man to his left spoke up ‘Why not forge straight ahead my lord?’

Sol placed a hand on his officer’s shoulder in comradely fashion ‘This is your first campaign in Durva Timon, so I’ll not judge you harshly, but consider this my friend. Once the storm clears we shall be in plain sight for any who might spy us from miles away. To the left and to the right the land is more rugged which both affords us cover and is also useful for any tribe who cares to lay in ambush. By contrast the way ahead is flat and featureless right up to the Grey Ravines by the mountain and any enemy can track our progress all the way from here to there and have ample time to await our entry into the enclosed ravines where we may be beset from either side. Should we enter those ravines they can also fall in behind us and have men waiting in front.’

Timon frowned ‘But surely my lord, our numbers …’

‘… can quite easily be reduced by judicious avalanches and a carefully planned ambush by relatively few men. I advise you to read Advus’ ‘Stratagems and Histories.’ Such a fate befell a legion in the year 439. The tribesmen may be savage but they are cunning and their intimate knowledge of the terrain would tell against us severely.’

‘You make it sound as if we are outfoxed from the start,’ Timon answered unable to keep a hint of scorn from his tones.

‘Not at all Captain, but a wise man scouts and finds out what his enemy is planning before he advances into battle. Armed with knowledge of what lies ahead we shall adjust our stratagems accordingly.’

General Ourbos nodded ‘More of Advus’ sage words my lord? Did not the master strategist fight alongside your ancestor at Merinvale?’

‘Aye, that he did General and saved the life of Starl Jager into the bargain or else I would not be here. So it is only fair we heed his wisdom.’ They all laughed merrily including Timon who deferred to the words of his hero Sol Jager after battling swiftly with his preconceptions that the pride of the Kruul did not need to do anything other than enter into battle to gain their rightful triumph. There was more to war after all than Kruul arrogance and the belief that they would conquer over all.’

If you would like to read the rest of Taste or The Golden Legion, simply follow the following US and UK links (or search your local Amazon) for ONE MILLION PROJECT. All proceeds to CANCER RESEARCH UK and the homeless charity EMMAUS.

https://www.amazon.com/dp/B016WLQTXW

https://www.amazon.co.uk/dp/B016WLQTXW

Thank you,

Jason.

About the Midnight Mission

On any given night, one in 217 people in Los Angeles will be homeless. Whether they’ll be sleeping on the streets, on a park bench or underneath some bridge, the situation – even if the background of each member of the homeless community is different – is the same. They are in need of shelter, and if not a refuge, care.

Men, women and children of all ages regardless of age, ethnicity, sexual orientation and religion are in need of food, medical care, and in the case of babies – nappies. A program is also necessary for some of these people to get back on their feet; to resume some normality or purpose to their lives.

To help the poor find self-worth, The Midnight Mission steps in. It is a charitable and voluntary organisation that makes it it’s business to reach out to the homeless community, providing food, care and shelter. It has been operating for over 100 years from 1914. Back then, the homeless population consisted of a small group of men in search of a hot nutritional meal and a place to hit the sack.

Times have changed out of all proportion, and dramatically, so much so, that this diverse community has reached a crisis point.

The Mission notably runs a Courtyard Outreach Program, a one-of-a-kind rescue operation enacted by its staff, who help the most chronically homeless individuals on Skid Row take back their lives.

The Courtyard is monitored 24/7 to ensure the safety and wellbeing of the Mission’s guests. The Courtyard helps to break the cycle of homelessness as it’s staff identifies the community’s most vulnerable people and creates a bridge for them to access its vital services which help each homeless individual to survive and find meaning or purpose in their lives.

Each day thousands of people walk through the Mission’s doors in need of basic human necessities which the rest of us take for granted. The organisation distributes Hygiene kits such as soap, toothpaste and a toothbrush. Families that need groceries may also receive a box of tinned and other non-perishable food items. Nappies are also available for parents who are either homeless or on low incomes and have young children.

Bathrooms on Skid Row (a luxury for the homeless community) are scarce. The Midnight Mission is one of only three facilities that allow 24-hour access to restrooms and showers. Emergency clothing is also readily available, which gives people a renewed sense of self-worth and belonging within their community, along with connections to mental and physical health care services and housing resources.

I thought I’d highlight this problem in one of the US’s major cities since I’ve chatted to a person online who has lived and worked in LA and has several times intimated how serious the homeless problem is there.

The Midnight Mission has faced a challenging year during 2016. Given the gloomy political outlook, it looks as though 2017 will be no less challenging for the charity to meet it’s needs and objectives.

By David Butterworth

OMP Admin Note: David Butterworth is a writer and OMP Network member – one of a group of networkers who will be blogging on a regular basis on various causes and issues.

David’s flash fiction will be available in Volume 4 of BITE SIZE STORIES (coming December 2016)

For the start of this series and other guest writers, follow these links:

https://www.amazon.com/Bite-Size-Stories-Jason-Greenfield-ebook/dp/B01HALHVBW/ref=la_B00CBFLI1W_1_4?s=books&ie=UTF8&qid=1475095358&sr=1-4

https://www.amazon.co.uk/Bite-Size-Stories-Jason-Greenfield-ebook/dp/B01HALHVBW/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1475095546&sr=1-1

 

Hunter’s Syndrome: Life in Stages

These days are so different.

He stares off into the distance.

I am sure his mind has wandered into somewhere magical as he begins to laugh and yelp.

A place I cannot follow. A place he visits more frequently these days.

He is fourteen now.

I find myself slipping back into the past as I watch his abilities slowly disappear.

I speak of him in the past tense, which I berate myself for. The guilt is horrible when I hear the words “Oh he used to…” Or “remember when he did this and said that…” coming out of my own mouth when talking about my son, who sits quietly in the corner, more and more often these days.

My son is still here and very much alive…

But these days; he isn’t the same child.

He is no longer that four foot whirlwind.
He no longer will tell strangers to “Fug off” when they stare at him.
He no longer calls me ‘mammy’.
He no longer yells his name for all to hear.
He is no longer defiant; and oh how I miss it.

I miss it all.

I miss his anger, his cursing, his throwing of objects, his screaming at me, his ability to shut down any one staring at him by telling them to ‘Fug off ‘.

I miss it all.

He still laughs.

He can still engage with me on a good day.

Certain words he can repeat.

He can still have a meltdown but they are few and far between.

I even miss the meltdowns; as for me, they let me know that he was still here, he was still with us and understanding the world around him.

He is quieter these days.

He still gets excited over his TV shows; but has lost that same excitement he used to have for Birthdays, Easter, Halloween and of course Christmas. These holidays were his world for so long, but now they mean little to him.

I miss it all.

He now has to use thickeners for his liquids and is awaiting a swallow test; as it appears his swallow is deteriorating. We used to have to lock our fridge because this same little kid would eat raw sausages if given the chance; he no longer even acknowledges the fridge. His favourite thing in the world, ‘ice-cream’ he can no longer have as it’s too thin and goes down the wrong tube, causing him to cough or even aspirate. We aren’t even sure if he misses ice-cream, if he remembers that he used to love it.

I miss not being able to trust him not to eat everything he saw.

When he was diagnosed back in 2008 at the age of almost 6; the doctors told us that Hunter Syndrome takes, takes and takes until there is nothing left to take.

My beautiful boy, Ethan has lost so much.

Everything from his hearing, his swallow, his heart, his lungs right down to his ability to walk… it is all dissolving right before our eyes and there is nothing I can do, for there is no cure for my boy and no cure for our family.

Ethan has Hunter Syndrome.

Hunter Syndrome affects (roughly) 2000 families all over the world.

Some are ‘luckier’ and have a milder version of Hunter syndrome, others are participating in a clinical trial for a possible cure, while others are just like us; our boys were born too early to even be considered for a clinical trial, while many families have already said their final goodbyes to their young sons.

I write about Ethan and our family and how we are learning to live, love and laugh again, ever since we were forced into this world of ‘special needs’.

Ethan brings us so much joy and laughter, but I would be lying to myself and others who live this life, if I wasn’t completely honest too – Hunter Syndrome isn’t an easy thing to have in your family, it takes so much, but, and it is a big but;

It teaches you to live.

It teaches you to live in the here and now.

To appreciate the tantrums, the screams, the kicks, the bites and all the bad language your child is able to say!

It teaches you that time is something we are all given; it’s what we do with it that matters.

It teaches patience.

It teaches kindness, acceptance, understanding, compassion, empathy.

It teaches us to be better, do better and live better by simply enjoying all those little things in life that so many take for granted; laughter, noise, first milestones, love…

There is hope for the younger generation of boys with hunter syndrome; ( there are only two girls diagnosed with Hunters currently in the world).
There is research. There is a clinical trial currently. There are a lot of advances being made towards a cure.

Currently, our boys are given an infusion every week, which helps slow down the progression of the syndrome. Our boys are missing, (or а partially missing) a teeny tiny enzyme; they are given a man-made version of this enzyme which cannot, for now, pass the blood brain barrier; meaning the deteriorating will continue at the same rate (as it would without the drug) in the brain, so our boys will lose skills they had already mastered in earlier life.

My son is Ethan; he is fourteen and a big brother to J and D. He is full of fun, laughter and love.

These days he is quieter, but he will cuddle me for longer and let me hold his hand for hours.

These days are hard, but they are full of making moments and memories with our three boys.

We know love.

We know sadness.

We choose to focus on the love that our boy showers us with daily.

He stares off into a place I cannot follow; I will always be waiting for him and softly calling his name, even if his response is slower these days.

*What is Hunter Syndrome?

Hunter Syndrome is a rare genetic syndrome.

It mainly affects boys; although there are two known cases of girls in the world.

There are roughly 2000 worldwide living with the syndrome.

There are varying degrees of Hunter Syndrome, mild and severe.

People living with (severe) Hunter Syndrome are missing an enzyme.

Others living with (mild) Hunter syndrome the enzyme is damaged or partially there.

That enzyme is responsible for helping break down certain complex molecules.

When that enzyme is missing or damaged the molecules build up in harmful amounts, eventually causing permanent, progressive damage.

This missing enzyme or lack of enzyme does so much damage; it affects appearance, mental development, organ function and physical abilities…. basically every single part of the body and mind becomes damaged over time.

It is a progressive, terminal/life limiting condition.

There is no cure.

There is a treatment which slows down the progression of the syndrome.

A man-made version of the enzyme is infused weekly into Ethan’s body; this looks to the untrained eye like dialysis. It takes 3-4 hours each week. It eases the symptoms but does not stop it. It helps Ethan’s body but not his mind. This is called Enzyme Replacement Therapy (ERT).

Children with the severe form of Hunter Syndrome rarely make it to adulthood.

Currently there are ongoing trials. In layman’s terms, they are trying to cross the blood brain barrier using the same drug which Ethan receives; the hope is that this will slow down the regression in the brain. To date, it is unsuccessful.

For more information on Hunter Syndrome please visit http://rarediseases.org/rare-diseases/hunter-syndrome/

Geraldine Renton.

OMP Admin Note: Geraldine Renton is a writer and OMP Network member – who will be blogging on an occasional basis on various causes and issues.

To learn more about Geraldine and her very important and personal message, please check out her website – http://geraldinerenton.com/

Geraldine is an accomplished and prolific blogger who is also writing her first book. More information about that will be added to this section for future blogs, when complete.

November Blues

Today feels like a gloomy day.

Donald Trump has just won and most of the people I know are in shock. He represents everything that humanity has been trying to fight for decades. It feels like we just stepped back in history. And the saddest part? He didn’t get there alone.

People I love, admire and respect chose him.

I can’t understand why. Not even after hearing their reasons.

I’m biased. Completely.

I know the USA will keep going. I know they’re strong enough to get through this. I have no doubt about that. People are frustrated and worried, but life keeps going and they’ll make it work.

I’m worried about my country. I’m worried about Mexico.

But most of all, I’m worried about humanity.

What kind of society are we leaving to our children?

A society that breathes television shows and has you tube vlogs for dinner?

Our technological advances have brought us closer and further away. We live in a world where people can thrive in China from the seat of their home in Canada, but who are having a hard time interacting with one another on real time.

Just take a look around you.

We’re glued to our phones, to our iPads or computers. Most of our interactions are defined by likes, retweets or shares. Popularity is based on how many online friends we have.
Our humanity is falling apart. Our values are disappearing.

I think this is a wakeup call.

This is the moment when people realize where we stand and how we can change it.

Because we can turn things around. We can learn from our mistakes and our bad choices.

We know what doesn’t work and instead of ignoring it, we can start to fix it.

We’re given another opportunity to fight for our beliefs and to be a better person each day.

It must start within ourselves, though.

It doesn’t have to be a huge change. We can start by appreciating our loved ones, by showing our children how to be respectful and kind to one another.

No matter what language we speak, or the color of our skin, or who we’ve chosen to love, we are humans, and we’re all in this together.

A small gesture is all it takes to change the world.

Gaby Cabezut

OMP Admin Note: Gaby Cabezut is a writer and OMP Network member – one of a group of networkers who will be blogging on a regular basis on various causes and issues.

Gaby first became known to me through a recommendation from the talented, helpful and nice Keri-Lee Kroeger. It didn’t take me long to realise that Gaby was also possessed of these qualities so she seemed a natural fit to join the OMP Blogging team.

A much respected and followed writer on the large writing site WATTPAD, Gaby has also been published on Amazon and her two published works HOPELESSLY IMPERFECT and PRINCE WITH BENEFITS can be found here.

https://www.amazon.com/Gabriela-Cabezut/e/B019NRRZFS/ref=sr_ntt_srch_lnk_3?qid=1479500866&sr=8-3-fkmr0

A story by Caby Cabezut will also be featured in the upcoming fifth volume of BITE SIZE STORIES.

The Doing Model – Today.

I ask you to be patient with me as I share my thoughts on the state of the world today in this blog, but we are in a Presidential election year and I feel the need to share with you a bit more about the Doing Model I mentioned in my last blog. I believe it has value and may help the outside world to understand where we are in the States at this time.

As I look at the current state of events in the United States and across the world, I see how the Doing Model put forth by Susanna McMahon, PhD, in her book: The Portable Therapist is playing out. She proposes that people subscribing to the early American work ethic, values we honor in the States, has lead to a society in need of therapy. She believes that there are more people exhibiting serious mental problems than there are individuals who are living complete and whole lives.

In this model, we travel our lives in a linear manner geared toward achieving goals and gaining material property and other external rewards. We are born into the system and progress through our lives measuring our success by how much we have gained: higher educational degrees, more promotions, successful families and children, bigger and better homes, more expensive cars, more wealth, more, more, more. This idea promotes the belief that we can never have enough or be enough, unless we are better than our neighbors.

It seems that those at the top can never have enough. Many families have more wealth than they could spend in many generations, but seek to get more. Businesses are there to make profits and pay dividends to their shareholders. They are there for the bottom line and aren’t concerned by how this impacts the world most of us live in. Bank presidents are paid tremendous bonuses even when their banks bring on a serious recession. The rich use tax breaks to avoid paying taxes and do not help in supporting the country’s infrastructure. Jobs have been sent out of the country and many families have lost jobs or had to take lesser paying positions to increase the profits of the large corporations. Pipelines are put in across territories protected by treaties and federal lands so gas can be moved at a greater profit for the wealthy. CEOs raise the costs of goods and services without being held accountable for their actions. War is desirable because it helps the profit margin. The desire for more never ends. The top 1% holds most of the world’s wealth, the middle class is losing ground, and the poor suffer. Many end up homeless.

When we are not at the top, when we are not the best, we therefore must be failures. Because it is difficult to believe we have failed, we look for external causes and begin to blame others for our lack of success. This dissatisfaction is played out on television every day. The cop shows are more dominant than family series. Burglaries, rapes and murders are watched on them and our belief that it won’t ever happen to us are diminished. We sometimes empathize with the villain and can see why he did it or why she deserved it, whatever it is. We learn to hate the police because they are there for the benefit of the wealthy while the others are profiled and abused. The Survivor shows, talent shows and lives of the rich and famous are more prominent than ever before. Athletes and stars are paid unbelievable salaries even if they are lackluster. The world is unfair and we can never measure up. Television rubs our noses in the success of the few and the failure of most.

Once we see how we have failed, we begin to be fearful of others. In the Sates today a race war has surfaced. I thought this had passed with Martin Luther King and others who helped bring us together, but now we see the hatred surfacing. The KKK and Nazi Party have become prominent in this years election and Americans are listening to their rhetoric of hatred. The NAACP tells us that Black lives matter when all lives should matter. Gays and lesbians are getting some rights but the Moral Majority has threatened to remove women’s rights by appointing Supreme Court and Federal Judges who will limit women’s rights. The Muslims are blamed for the evils of the world. Distrust of everyone is rampant. Political rhetoric states that we will make America great again, telling us that we are no longer great.

Have I depressed you enough? Sorry, but we must suffer a bit before we can dig ourselves out of a politically difficult situation. For me there is light at the end of the tunnel. Gen X has begun to turn away from the values we have cherished. Many are seeking to live in smaller homes and many don’t even want to own a car. Marriage is not as important as it once was and even the number of children desired is less. They may still want the latest technology and gadgets, but the footprint they make on the world may be smaller than that of previous generations.

For the older generations, we are beginning to see that the world we have created needs change. Global warming is beginning to surface as a problem and we may be ready to give up a bit in order to save the world from the disease of greed. The genocide of the Native Americans and the degradation of their peoples are frequently seen on Facebook and other media and are now viewed as a problem. A race of peoples may finally be understood and get the notice that has been denied to them since the Europeans took their country. A dysfunctional government has been recognized and the masses are asking for change. It might take a while before change occurs, but at least we understand the need. The rights of everyone will be looked at in the future, not just to be considered “politically correct” but also to truly understand the value of every individual.

The mental illness that many suffer can be treated. Cancer will be worthy of a cure instead of pharmaceutical intervention. Until that time, we ask you to support the OMP Project and help us help others.

I promise to be a bit more upbeat next edition. The election will be over and we will be seeking many new solutions to world concerns. Meantime consider the journey you are on in this life and see how you can be a solution. Thanks for reading and respond if you have time.

Nancy is writing a series of journaling materials to help people understand their own lives and move into a better world. Reflections Through the Looking Glass should be coming out in 2016. She also writes stories about haunted places and haunted lives. Share your story with her. Maybe  she can use it in her books.

Nancy PS Hopp

OMP Admin Note: Nancy PS Hopp is a writer and OMP Network member – one of a group of networkers who will be blogging on a regular basis on various causes and issues.

Nancy is a writer I encountered on the writing site WriteOn. I was impressed with her thoughtful and mature flash fiction stories, often based on her own experiences and background and asked her to join the One Million Project network, as a valued member.

One of those stories or a brand new one will appear in the guest writer section of the upcoming volume four of the anthology BITE SIZE STORIES series.