Speculative Fiction Reviews, Interviews, Art and Whatever Else!
A fiery spirit dances from the pages of the Great Book. She brings the aroma of scorched sand and ozone. She has a story to tell….
The Book of Phoenix is a unique work of magical futurism. A prequel to the highly acclaimed, World Fantasy Award-winning novel, Who Fears Death, it features the rise of another of Nnedi Okorafor’s powerful, memorable, superhuman women.
Phoenix was grown and raised among other genetic experiments in New York’s Tower 7. She is an “accelerated woman”—only two years old but with the body and mind of an adult, Phoenix’s abilities far exceed those of a normal human. Still innocent and inexperienced in the ways of the world, she is content living in her room speed reading e-books, running on her treadmill, and basking in the love of Saeed, another biologically altered human of Tower 7.
Then one evening, Saeed witnesses something so terrible that he takes his own life. Devastated by his death and Tower 7’s refusal to answer her questions, Phoenix finally begins to realize that her home is really her prison, and she becomes desperate to escape.
But Phoenix’s escape, and her destruction of Tower 7, is just the beginning of her story. Before her story ends, Phoenix will travel from the United States to Africa and back, changing the entire course of humanity’s future.
Thanks to Hachette Australia for a review copy of this book.
So, I rarely review books that I’m not particularly optimistic about, mainly because I try very hard to keep this a positive space, and about books that I genuinely think deserve promoting. However, I actually really wanted to try and explain why I found The Book Of Phoenix problematic. It’s been niggling at my mind for days; the need to give a full explanation for my lower end rating. It comes down to the fact that I was incredibly in love with parts of the book, and yet really disappointed with others; I find I am unable to let this lie without an explanation. I usually find books with this sort of dichotomy really hard to level out in my mind, and so my opinion is always a bit disorderly. But, not with this book. I can pretty much tell you exactly what I loved, and what I didn’t, because it is actually glaringly obvious this time.
So, break it down really simply. What I worshiped, is Nnedi Okorafor’s ability to create characters, and explore their back story. There are explorations of culture, of gender, of diversity, and of politics. The clash that can occur between cultures that don’t fully understand each other, or want to: the prejudice, racism, and ignorance that can exist between co-exiting races and cultures. All of these perfect details, sewn within each characters background.
I absolutely adored the sections of this book when the various characters sat down with Phoenix, and they told her about how they got to the place they are at now, almost like a parent telling a child a story. It is akin to oral storytelling, rather than written words on a page; that’s how beautifully composed those sections are. I love the explanations of places, cultures, and characters, that I would never have the opportunity to explore for myself, and therefore never have first-hand experience of. Points of view that I will never fully comprehend, even though I try to. They are so well done, so completely engrossing, that it kept me reading the book, when frankly it might have ended up in the DNF pile.
The thing that didn’t impress me so much, was the over arcing plot. Around a third of the way through, the intensity, and sincerity of the narrative started to fall flat. It became tired. I’ve read variations of the same narrative, so many times before, that I could predict what the ending would be. And, I’ll be honest, it annoyed me that Okorafor put so much effort into creating these extremely beautifully rendered characters, with such rich backgrounds and unique stories, but the plot line fell into a generic pattern. In a way, I think it might have been done on purpose, to show that a strong, black African female, could play the role of the hero (or villain), as well as any other cookie-cutter heroine within this type of storyline. Unfortunately, I wanted more for Phoenix, I wanted to see her shine brighter than those common cookie-cutter heroines. She didn’t, because the plotline flattened her out.
I am not an author, I’m certainly not the author. So I’ll only say what I wish had happened with this book, rather than saying what should have happened with this book. And, ask that you take it with a grain of salt. I personally would have loved to have seen this, as a book of short stories based on each character individually, in that first person, oral tradition tone that Nnedi Okorafor used so well. The stories of not only how these characters ended up in this situation, but their background, their cultures, their experiences; everything that Okorafor was able to bring out so exceptionally during those times exposition in The Book Of Phoenix. It didn’t need that bland, predictable, plot line to showcase Okorafor’s ability to bring out the most poignant parts of a characters story, and make them gleam. I would have devoured every single word of that…
Full disclosure, I haven’t read Who Fears Death, the book that this is a prequel to, so maybe in some way I have missed the importance of the plotline, I don’t know. However, it certainly didn’t make this book stand out as a book that could be read as a standalone, or something you would want to read before Who Fears Death.
(and the very end of the book made absolutely no sense… I’m guessing that is where the crossover between the two books occurs? Maybe a character that is in Who Fears Death)
I feel relieved now that I’ve written that down!
Has anyone else read The Book of Pheonix? What did you think?
(it's still a preorder for anywhere outside the UK I believe!)
At the end of The Godless, Mireea lay in ruins, the dead of the city had risen as ghosts, and the keepers Fo and Bau had been slain by Zaifyr.
The Mireeans have now fled to the city of Yeflam with the immortal Zaifyr in chains to barter for their safety. With the threat of war arriving at the Floating Cities, Zaifyr's trial will become the center of political games. However, Zaifyr is intent on using his trial to begin a new war, a motive that many fear is an echo of the dangerous man he once was. Ayae, a young girl cursed with the gift of fire, sees a chance to learn more of her powers here in the floating city, but she is weighed down by her new responsibilities regarding the safety of the Mireean people.
Across the far ocean, exiled Baron Bueralan and cartographer Orlan have arrived in the city of Ooila with some chilling cargo: the soul of a dead man. As the two men are accepted into the city's court, they are pulled ever deeper into the Queen's web of lies and deceit. All the while, a rumor begins to spread of a man who has come ashore, whose seemingly innocent presence threatens them all.
So, this is kind of In Lieu of a Review. See, the general gist, is that if my brain is inspired enough to force itself to work for hours and hours on an image from a book, you can be assured the book must be pretty bloody good. Even if the image isn't! Cause I'm a lazy kind of person, so if I could get rid of the urge, and stare mindlessly at a wall instead, I probably would..
In actual fact, as much as a review would probably make the author/publisher a lot happier, this kind of thing actually represents a hell of a lot more to me, than any words I could conjure up about the book.
So, yep, make of that what you will! I'm going to go back to staring at the wall for a bit now... ;)
For centuries beyond counting, humanity has served the Others, god-like Eternals who rule from their cloud-capped mountain-city, building a civilization of unimagined beauty and unchecked viciousness.
But all that is about to change. Bas Alyates, grizzled general of a thousand battles, has assembled a vast army with which to contend with the might of Those Above. Eudokia, Machiavellian matriarch and the power behind the Empty Throne, travels to the Roost, nominally to play peacemaker - but in fact to inspire the human population toward revolt. Deep in the dark byways of the mountain's lower tiers, the urchin Pyre leads a band of fanatical revolutionaries in acts of terrorism against their inhuman oppressors. Against them, Calla, handmaiden of the Eternals' king, fights desperately to stave off the rising tide of violence which threatens to destroy her beloved city.
Thanks to Hachette Australia for providing a review copy.
So, firstly I thought I should let you know that I am currently trying out speech to text software, so if there are any extreme mistakes, I am blaming the software, and not myself.
It’s only fair! :)
I am trying to think of how to explain the many ways The Empty Throne series has impressed me. Those Below in particular, I believe, is a masterful piece of fantasy literature. Firstly, there is Polansky’s writing style. I don’t know if he sits at a desk, and ponders over every word that he puts in a sentence, or it simply passes from brain to page, but every word used is absolute perfection. Every word encapsulates the exact sound, feeling and attitude that the scene requires. It’s almost hard to explain, how precisely each word fits; it’s like a jigsaw piece snapping into place. No, this isn’t purple prose, it’s the work of a writer that has a firm grasp on how to use vocabulary to its fullest potential.
He also manipulates the use of grammar, to create the exact amounts of urgency, and tension, within a paragraph that is required. This is particularly evident in scenes of battle, or high action, in which he uses punctuation to instil true forward movement and momentum into the scene. I’ve seen other authors try to do this before, but none have actually mastered it quite like Polansky has in The Empty Throne series.
Another outstanding achievement, is Polansky’s ability to create tension. I don’t mean tension in certain places, or in certain situations, I mean throughout the whole novel. Usually, I prefer my books to crescendo, but Polansky left that behind in the first book of the series, Those Above, and seemingly decided to have the readers on the edges of their seat, from go to woe in Those Below. It feels as though he has each character walking on a tight rope, and he could flick any one of them off it, at any given time. I rarely feel the need to flip to the back page of a book, but there were plenty of times in Those Below that I was truly tempted, due to the tension leaving me in this weird state of anxiety about what the outcome might be. It actually works incredibly well, and it kept me devouring pages long after I should’ve been asleep.
That being said, the pacing in this book can feel slightly wonky at times, due to the changes in point of view. It’s not a major complaint, but it is slightly jolting when you go from a back street knife fight, straight into, say, a dress shop choosing fabrics. It’s not an uncommon thing to happen in any book where each point of view is so glaringly different, but it is slightly more noticeable in this, because of that high tension level.
The characters in Those Below, aren’t particularly likeable, and all are approaching the final destination from different angles. Yet, each has a quality that can be described as endearing: Pyre for his complete conviction. Eudokia for her intelligence, and cunning. Calla for her dedication, and willingness to die for the sake of her master’s race. Bas for his no bull shit attitude, who is hard in the face of battle, yet can still mourn a friend. However, there is no sense that the reader should be inclined to be on any character’s side. None of these characters, are good characters. They are as grey as a winter sky, and if you’re expecting otherwise, you’ll be severely disappointed.
The nitty-gritty, the stuff happening below the surface plotline, is actually quite unnerving. The four main characters, could each be representatives of the archetypal figures, that have created the world that we live in today. A man who is marginalised, denigrated, desperate, and is an easy target for what we would call becoming “radicalised”, simply because finally someone is willing to accept him, and give him the power he’s been denied from birth. Another who has power and privilege, and seeks no more, but refuses to share it. A woman, who to prove her power within a patriarchal society, can only do so by claiming power over everything in her path*. A man, who is simply fighting, because he’s been told to, but has no desire for power at all. And the results are disastrous, for all the characters involved. It’s quite chilling to read Polansky’s bleak outlook, and believe that it could be absolutely relevant in “real life”. But, it is absolutely believable, and absolutely relevant.
I will admit, that is much as I love this book, this series isn’t for everybody. It is one of the darkest novels I have read. The resolution is harrowing, and it is that way because of its believability, even though it is fantasy. This book is bleak, brutal, and will leave you with the taste of copper on your tongue, until you can finally put it aside. But, It is so very hard to put aside.
However, those are the exact reasons that I adored it. Sometimes, it’s only the taste of copper that will finally jolt you awake.
I eagerly await the next Polanksy novel, whatever it may be..
*NB. This does not mean that the book is some kind of MRA “Gah! The wimmins are trying to kill the mens” propaganda. This is a “don’t underestimate a person due to their gender, appearance, or age.” book. The characters are all well balanced in their machinations, no matter the reasoning behind them.
Frohe Ostern from Kristy's Menagerie von Katzen!
I'm celebrating with many tissues, home made chicken soup, reading The Godless by Ben Peek (the title was total coincidence! Ha!), and huffing a ton of eucalyptus and peppermint oil..
Yup, head cold!
Have a great day people of the book (and people not of the book!), no matter how you're celebrating the holiday! Hope it's a bit less snotfull than mine!
Love Kristy, The Frost Beast, Nyxnissa, Phryne & Iris
Cello is in crisis. Princess Ko's deception of her people has emerged and the Kingdom is outraged: The Jagged Edge Elite have taken control, placing the Princess and two members of the Royal Youth Alliance under arrest and ordering their execution; the King's attempts to negotiate their release have failed. Color storms are rampant, and nobody has heard the Cello wind blowing in months.
Meanwhile, Madeleine fears she's about to lose the Kingdom of Cello forever. Plans are in place to bring the remaining Royals home, and after that, all communication between Cello and the World will cease. That means she'll also lose Elliot, now back in Cello and being held captive by a branch of Hostiles. And there's nothing he can do to help his friends unless he can escape the Hostile compound.
Worlds apart and with time running out, Madeleine and Elliot find themselves on a collision course to save the Kingdom they love, and maybe even save each other.
Jaclyn Moriarty grew up in Sydney's north-west and studied Law and English on three continents - at Sydney University in Australia, Yale in the US and Cambridge in England.
She spent four years working as a media and entertainment lawyer and now writes full-time so that she can sleep in each day. She lives in Sydney.
Some of her favourite things include snow, ice, blueberries, chocolate and sleep.
Hello Jaclyn Moriaty! Congratulations on the much anticipated release of A Tangle of Gold!
Firstly, could you explain to those uninitiated with The Colours of Madeleine series, what it is about from your point of view?
It’s about a girl called Madeleine who lives in Cambridge, England, in our world, and a boy called Elliot who lives in the farming province of the Kingdom of Cello. Madeleine and Elliot begin writing letters to each other through a crack between worlds that opens up in a parking meter.
The work of Sir Isaac Newton plays a large role in the series; Madeleine becomes obsessed with his ideas, and his theories of colour and light play a large role in communicating with the Kingdom of Cello, as well as its system of magic. I was wondering if you began writing with Sir Isaac Newton as a focal point for the books, or did his theories happen to slot in to ideas that you had already thought of?
I started with colour. I decided I wanted colour to come to life in the Kingdom of Cello, and so I began to research the science of colour (to see if that might actually be possible…). That led me to Isaac Newton. I already knew about his gravity and his laws of force, but I hadn’t known the story of his buying himself a prism in a marketplace, taking it home, darkening the windows, and discovering that white light is composed of the colours of the rainbow. I liked the story so much that I read a lot more about Isaac Newton and his life, and he turned out to be a super cool guy with a collection of stories and mysteries surrounding him. So I decided to include him in the books. The fact that he spent most of his life at Cambridge, and that Madeleine already lived in Cambridge, gave me a perfect excuse.
How do you create a world like The Kingdom of Cello? Are you a Gardener, Architect, or Architectural Gardener?
The plants on my balcony here would laugh in a quiet and bitter way if they heard you asking me if I’m a gardener. Or they would if they were alive to laugh. I like to draw pictures when I’m planning books, so I guess I drew the Kingdom of Cello into existence. But people who’ve played Pictionary with me before would laugh in a quiet and bitter way if I tried to tell you that I am an Artist.
Reading this book as an adult, I ruminated quite a lot about how much I wished I had access to this type of YA fantasy as a younger me. I never saw myself in the YA fantasy hero/ines, they always seemed to think and act in such a linear way, whereas I was all tangents and swirls (still am!). What made you decide to allow your characters to be teenagers first and foremost, and let them become hero/ines because of their tangents and swirls, rather than in spite of them? Was it harder to conceptualise the story in that way, rather than in a more linear heroic fantasy story line?
I love this question, and I love that you are tangents and swirls. I guess my first few books were all realistic YA fiction so character was at the forefront. Although I am drawn to the magic of fantasy, I am also very intrigued by character in all its complexities. So it was important to me to bring the characters to life inside my head before I even started writing this.
The books deal quite heavily with characters coping with missing caregivers: both Madeleine and Elliott have missing fathers, Kiera's mother is incarcerated, Jack's parents have died, even The Kingdom of Cello is missing it's rulers! And, each of the characters cope (or not!) with this loss in a different way. Why did you decide to focus on that aspect of life in the books, and did it play a large role in the creation of the characters from the outset?
I thought a lot about the traditional conventions of fantasy when I was planning this trilogy, and one of them is the absent parent. Often, fantasy begins with the death or disappearance of a parent, and this is a kind of narrative trigger. It sends the hero away on a quest for revenge, or to seek out the lost parent, or it places the hero in an unexpected position of power or responsibility. I was more interested in looking closely at exactly what it means, in a real human sense, to have a parent who is missing.
When writing a series full of intrigues and mystery, like The Colours of Madeleine, and some of those intrigues stretch out over three books; do you know right from the outset how they will play out? Or are you sometimes just as surprised as the reader?
I planned the whole trilogy before I started, and I had a long, detailed plan, but some things took unexpected turns. There were definitely things that surprised me. And there were a couple of changes of direction based on throwaway lines people said to me between books.
What does your writing process look like, and how many daily cups of caffeinated beverages does it include :) ?
First I take my 9-year-old to school. Then I walk to a café where I look over research notes and draw pictures and scribble ideas in a big notebook. I use coloured textas for this. I spend the afternoon at home writing at my computer and then I go and get my son from school. I used to drink coffee all day long without stopping,
and then I found I was drinking more and more coffee to get the same mad buzz that made the writing fly along. So I thought: , this is an addiction, and I stopped drinking coffee. I had terrible headaches for a month and now I’m scared to start drinking coffee again. So I drink peppermint tea and eat chocolate. Lately I’ve been finding that I need more and more chocolate to get the same mad buzz that makes the writing fly along …
If you were caught in a colour storm, which colour would you want to be caught in, and why?
Turquoise Rain because it’s like a party. And pretty.
If you had a choice to live in Cello, or the 'real world', which would you choose?
As long as all my family and friends were there too, it’d have to be Cello. (And I’d want to change the rules about having to be under 16 to visit the Lake of Spells. I seem to be over 16.)
The obligatory question to ask all authors: What are your top 10 fantasy books to read (YA or Adult)?
Diana Wynne Jones, everything she has written - I could use up my top 10 on her; Garth Nix, Lirael; Roald Dahl, James and the Giant Peach; E. Nesbit, The Phoenix and the Carpet; Madeleine L’Engle, A Wrinkle in Time; Norton Juster, The Phantom Tollbooth Jonathan Stroud, The Bartimaeus Trilogy, Phillip Pullman, His Dark Materials; Tove Jansson, the Moomin books; C.S. Lewis, Narnia books; P.L. Travers, Mary Poppins books (that’s more than 10, isn’t it, but I could keep going).
Lastly, have you any other releases coming up, or projects in the works at the moment? Is there any chance of another fantasy novel?
I’m working on a few different things at the same time. A novel about a woman who enrols in a course that promises to teach her how to fly; a book about a girl whose parents ran away to have adventures with pirates and have now left her instructions to deliver a chest of treasures; a new Ashbury-Brookfield book about Emily Thompson’s little brother; a time travel book; and a book about my great-grandmother, whose four children were brought up in an orphanage.
Many thanks to Jaclyn Moriarty for stopping here at Book Frivolity!
You can follow her on Social Media on Tumblr, Twitter, Instagram and Facebook. Look out for her new release A Tangle of Gold, or the full series The Colours of Madeleine out through Pan Macmillan Australia. It's in stores now!!
So, I've decided to teach myself real 3D modelling! It's been an interesting process, but I find creating graphic art a cathartic outlet for expressing my wonky brain waves.. And surprisingly much easier than typing them out, now that I have my funky new mouse!
After a lot of messing about, I finally decided to render this attempt at Shallan Davar and Pattern from Brandon Sanderson's Stormlight Archive series. I decided to call it "Mmm.. Lies", for reasons probably obvious to those that have read the books! If you haven't read them, go grab them!
Well, the piece has it's flaws, but for my first rendered creation, I am actually pretty ok with it!
This is an audio review! You can listen to it here on SoundCloud or via the player embedded at the bottom on the post!
Thank you to Hachette Australia for supplying a copy for review!
The epic conclusion to The Dagger and The Coin series, perfect for fans of George R.R. Martin.
Lord Regent Geder Palliako's great war has spilled across the world, nation after nation falling before the ancient priesthood and weapon of dragons. But even as conquest follows conquest, the final victory retreats before him like a mirage. Schism and revolt begin to erode the foundations of the empire, and the great conquest threatens to collapse into a permanent war of all against all.
In Carse, with armies on all borders, Cithrin bel Sarcour, Marcus Wester, and Clara Kalliam are faced with the impossible task of bringing a lasting peace to the world. Their tools: traitors high in the imperial army, the last survivor of the dragon empire, and a financial scheme that is either a revolution or the greatest fraud in the history of the world.
Also contains a simple overview of the series for those yet initiated with The Dagger and The coin!
I just read the gorgeous dark fantasy short story "Naked the Night Sings" by Teresa Frohock, that I think you might all enjoy!
Music, demons, dragons and catastrophic tapestries.. You can check it out on Wattpad here! (do it! It's freeeeeee ...!)
This is not really book related, this is me related. It's a cause incredibly important, and personal to me, so I thought I'd share it here. Kind of reluctantly actually, the whole idea of being so personal scares the bejeezus out of me, and I've mulled over whether to do this for days.. But here goes nothing..
So, today is Rare Disease Day.
And, I've just lost 95% of people's attention.
Fair enough. I can't dress a rare disease in funtastic cosplay for a selfie, I can't turn it into a ripping fantasy novel plot line, I can't make it into a hilarious Deadpool meme.
And, what does a rare disease matter? It's rare, right?! You'll probably never need to address it, it will probably never affect you directly, nor will you know somebody that has one. But you do. You know me. And I have a rare disease.
I have Parenchymal Neurological Behcet's Disease, which is a subset of Behcet's Disease proper. According to statistics, of the 24 million people in Australia, I am approximately only one of 116 in this country to be graced with it. So, I'm rare, bitches.
Let me tell you, I'm not fond of it. We aren't having a hell of a good time together. It's meaner than the popular clique in high school; except I don't get to leave this disease, and recreate myself in post-raredisease college.. Because it's incurable.
What I can do, is make people aware it exists. I can put some lights around it, spark em up, and let the world know “We Are Here” with big flashing strobes. We might be rare, but we will not be invisible.
If you've made it this far, you might be wondering what Parenchymal Neuro-Behcet's disease actually is! I appreciate your curiosity, thank you!
Here's the run down in technical terms from the all wise Wikipedia (or, you may check out the useful meme provided in the post for the tl;dr version) :
Behçet’s disease is recognized as a disease that cause inflammatory perivasculitis, inflammation of the tissue around a blood or lymph vessel, in practically any tissue in the body.
P-NBD main symptom is meningoencephalitis which happens in ~75 % of NBD patients. Other general symptoms of Behcet's disease are also present among parenchymal NBD patients such as fever, headache, genital ulcers, genital scars, and skin lesions. When the brainstem is affected, ophthalmoparesis, cranial neuropathy, and cerebellar or pyramidal dysfunction may be observed. Cerebral hemispheric involvement may result in encephalopathy, hemiparesis, hemisensory loss, seizures, dysphasia, and mental changes including cognitive dysfunction and psychosis. As for the spinal cord involvement, pyramidal signs in the limbs, sensory level dysfunction, and, commonly, sphincter dysfunction may be observed.
Some of the symptoms are less common such as stroke (1.5%), epilepsy (2.2-5 %),brain tumor, movement disorder, acute meningeal syndrome, and optic neuropathy
So, yup. It's all about the funz! Everyone loves a bit of Sphincter Dysfunction! Woot (or poot)! The basic gist, is that my blood vessels can become inflamed at any time, anywhere in my body. My body, actually hates itself enough to try and internally combust, without asking my permission first. Bad Rover! For me, Behcet's likes to stick around in my cranial region, cartilage in my joints (chondritis) and GI system; but occasionally it likes to travel to new and exciting locations! It's full of wanderlust! Others with Behcet's, can have different problematic areas, but it can attack anywhere blood travels in the body. So, my toenails are safe-ish.
I'm lucky enough to be on a medication that controls the mouth and genital ulcers. You have no idea how good it feels to be able to sit without gingerly mincing about on a seat to find a position, that doesn't make your undercarriage feel like razor blades are jostling for position in your underwear. No really, it's a state of bliss!
The rest of it, is still very bloody messy. My brain looks like Swiss cheese (a zombie probably wouldn't even attack me). My motor skills are toddler-esque, my muscles don't work respond to commands, and sometimes I just randomly fall on my arse for the heck of it. It's taken days to write this, because my fingers have a problem with authority. The headaches, are pretty much constant, and can't be controlled without medication that makes you as dopey as a kitten rolling in a field of catnip. If you look closely at my blog, you'll see evidence of the times I've tried to write when on it. So mostly, I just put up with them. It's a decision I'd rather not have to make, neither option is a good one. If I can walk, I use a stick. If I can't, I use a wheelchair. It's a kind of 'Wheel of Misfortune'. What symptom will you spin up today?'. And, there is no proven treatment.
Hopefully, one day, people will take enough notice of the disease, that the people with money to burn, will research it thoroughly enough, so that we at least find a real treatment. Or, a cure. *sings hallelujah chorus*
Cause we don't have one. We're medical Guinea pigs. We are poked, prodded, and tested by doctors that are as clueless about the disease as the general public are. I don't blame them, they can't know everything about every disease, and when there's no awareness, we can't really expect much more. I am lucky enough that one of my doctors (a neurologist that realised, gee, that's actually not MS you have there) took the time to do some real behind the scenes research (a year of it!), or I'd still be in the dark about what's wrong with me. Probably going a little (or a lot) nuts!
So many aren't so lucky, and so many with rare diseases are dismissed out of hand, because they don't fit the medical mold. Many suffer needlessly for decades without a diagnoses. And when they get one, there's usually no proven treatment.
We are given drugs that may, or may not work, but fuck me, they have some wicked side effects that need to be endured to try to find that skerrik of relief; whether they are successful at quelling the symptoms, or not.
I have 6 different - ologists. 6 specialists, and I swear they communicate in smoke signals from building to building, so much information is lost between them. But, again, it's not completely their fault; our community isn't set up for people that have no proven treatment for their illness. We just get pushed from specialist to specialist, looking for the best way to mask the symptoms. (I have heard there are Behcet's centres in other countries! I hope they are serving you well!)
And this, is why Rare Disease Day exists. Because only around 400-ish of the 7000-ish (yeah 7000!) rare diseases that exist, have PROVEN TREATMENTS (are you feeling me yet?) . That is not enough. It's just not good enough. And it's because, the 95% of the people that tuned out at the start of this post, tuned out… If nobody listens, nobody is listening. Hello! *waves* We Are Here! If the general public doesn't care, neither do the people who can get this shit done. Why would they, if it's low priority to the general populace. I wouldn't mind a cricket stadium full of people wearing Behcet's blue, but it's not a reality that will ever come to pass.
We don't really want your sympathy; we don't need inspo-porn, we don't need clickbait AMENS! Although your empathy is very much appreciated, what we really need is your help to spread knowledge, and awareness. A rare disease, does not suddenly make us want to lead unproductive lives, or be cut off from experiences that are taken for granted by others. Or be given quack suggestions on cures (A Quinoa and China seed diet ain't going to cure encephalitis.. Sorry!). But that's exactly what happens to a good proportion of us, because the real awareness just isn't there.
What we need real, medically proven, empirically tested treatments. We want to contribute our worth, our talents, and our dreams to society. We can't do that lying in bed with Sphincter Dysfunction (Woot Poot!) and a head full of inflamed brain tissue (a lot of this blog is actually written/spoken in that condition. It probably shows! Ha!)
Listen. Please. We Are Here. Help us get the word out that we aren't going to lie down, and suffer. We are warriors, and a lot of us are going to cark it of old age before we see anything done to help our fellow sisters and brothers in arms. What we can do, hopefully, is help the next generation of Behcet's warriors, and other rare disease superheroes, not have to fight so bloody hard through the jungle of medical misfortune. If we stand together, we can be noticed. By you, by the world, and by those that will be our ultimate saviors: doctors, nurses, researchers, clinicians, hospitals.
Here are some links. Please click on them, read something about it, become informed. Not just about my disease, but rare diseases in general. Donate something if you're feeling extra generous, but the real key is knowledge. Do it, or I'll haunt you when I die of meningoencephalitis (or being hit by a bus, whichever comes first). And I will be a roaring bitch of a poltergeist, trust me! Hope you weren't sentimentally attached to Granny's vase, cause it's probably going to hit a wall when you least expect it…
I jest a lot. I try to be as light-hearted about this as possible. But, In all honesty, no jesting, THANK YOU for reading. I'm pretty sure not many got this far, so you have no idea how appreciative I am of your time.
I thank you, the Behcet's community thanks you, and all of those with rare diseases, thanks you! You rock!
I'd kiss you, but I get tongue cramps (true, it's a really disconcerting feeling too.. ).
This is an audio review! You can listen to via SoundCloud, or the embedded player in the post below!
A small group of commuters and tube workers witness a fiery apocalypse overtaking London. They make their escape through a service tunnel. Reaching a door they step through...and find themselves on a wild shore backed by cliffs and rolling grassland. The way back is blocked. Making their way inland they meet a man dressed in a wolf's cloak and with wolves by his side. He speaks English and has heard of a place called London - other people have arrived here down the ages - all escaping from a London that is burning. None of them have returned. Except one - who travels between the two worlds at will. The group begin a quest to find this one survivor; the one who holds the key to their return and to the safety of London.
And as they travel this world, meeting mythical and legendary creatures,split between North and South by a mighty river and bordered by The White City and The Crystal Palace they realise they are in a world defined by all the London's there have ever been.
Thanks to Hachette Australia for providing a review copy.
This may also contain some extra rambling about why I love modern Portal Fantasy. Maybe..
Cello is in crisis. Princess Ko's deception of her people has emerged and the Kingdom is outraged: The Jagged Edge Elite have taken control, placing the Princess and two members of the Royal Youth Alliance under arrest and ordering their execution; the King's attempts to negotiate their release have failed. Color storms are rampant, and nobody has heard the Cello wind blowing in months. Meanwhile, Madeleine fears she's about to lose the Kingdom of Cello forever. Plans are in place to bring the remaining Royals home, and after that, all communication between Cello and the World will cease. That means she'll also lose Elliot, now back in Cello and being held captive by a branch of Hostiles. And there's nothing he can do to help his friends unless he can escape the Hostile compound. Worlds apart and with time running out, Madeleine and Elliot find themselves on a collision course to save the Kingdom they love, and maybe even save each other.
International Rare Disease Day is on the 29th of February! So, I thought that I'd whip up something for all my fellow Mistborn Era Two lovin' spoonies, that need some extra Twinborn powers!!
Your Allomantic and Feruchemical needs, are now covered!
We are warriors, never forget it!
Fresh from BATMAN: DEATH OF THE FAMILY and SUICIDE SQUAD, Harley Quinn returns to her first solo series in the New 52! The writing team of Jimmy Palmiotti (ALL STAR WESTERN) and Amanda Conner (BEFORE WATCHMEN: SILK SPECTRE) unleashed Harley on an unsuspecting DC Universe, as she encounters various heroes and villains ... and leaves no one unscathed in her wake! With art by Chad Hardin and a slew of comics' best artists including Darwyn Cooke, Sam Kieth, Tony S. Daniel, Paul Pope, Walter Simonson and Art Baltazar!
Collects HARLEY QUINN #0-8
Grab it from Amazon.
Am I the only one that loved the guts out of this? Harley is slapstick funny, the violence is gratuitous, the jokes as daggy as all get out, and the dark, yet overly saturated graphics look absolutely stunning!
I giggled hyena-like throughout most of it, and although the story line isn't exactly high literature, it's strong enough to support the over the top nature of Harley (and the gangs) characters. Harley is sexy, but not overly sexualised; her relationship with Poison Ivy is sweet without becoming a horn boys wet dream.. I really enjoyed this New 52 version of Harley, in which her character doesn't revolve solely around The Joker (he's mentioned once, or twice, but only in passing).
Rock on! I'll definitely be reading the next collection. Hopefully the rest of the N52 gives this much agency to its female characters!
Audio Review: You can either listen at this SoundCloud link, or through the player attached to the bottom this post!
Many thanks go to Hachette Australia for providing a review copy.
The Bands of Mourning are the mythical metalminds owned by the Lord Ruler, said to grant anyone who wears them the powers that the Lord Ruler had at his command. Hardly anyone thinks they really exist.
A kandra researcher has returned to Elendel with images that seem to depict the Bands, as well as writings in a language that no one can read. Waxillium Ladrian is recruited to travel south to the city of New Seran to investigate.
Along the way he discovers hints that point to the true goals of his uncle Edwarn and the shadowy organization known as The Set.
Another audio review! To listen either go to SoundCloud through this link here, or check out the player at the bottom of the post!
Thanks to Harper Voyager Australia for supplying a copy of The Vagrant for review.
The Vagrant is his name. He has no other. Friendless and alone he walks across a desolate, war-torn landscape, carrying nothing but a kit-bag, a legendary sword and a baby.
His purpose is to reach the Shining City, last bastion of the human race, and deliver the sword, the only weapon that may make a difference in the ongoing war.
But the Shining City is far away and the world is a very dangerous place.
I find the connection between how mental images are created in a readers mind, through the use of mere words on a page, extremely intriguing. I really have no idea how it's done, and there's been raging debates throughout the centuries about the concept; philosophers, psychologists, and neuro-scientists have all had a stab. There's new theories coming out of the woodwork all of the time, as technology allows us to track the brains workings.
In any case, I've been reading The Vagrant. And throughout, my mind has been conjuring Hieronymus Bosch type imagery. Usually, my minds eye flings up movie type scenes, quite realistic in nature. However, The Vagrant is throwing out a flowing, almost animated, Bosch-type apocalyptica. I don't know why this is, and I find it a curiosity. Is it Peter Newman's style of writing? It's certainly unique, it has a harsh, yet poetic nature about it. Is the connection between his style, and how I view Bosch's art? Maybe!
Many people know I have a neurological disease, and sometimes I wonder if as it progresses, there something changing in the way I process words and images. Are the connections between my memory, occipital lobe, and parietal lobe starting to get just a tad screwy? I don't know that either! Maybe someday, somebody will figure out how to map all those connections directly..
So, I decided to experiment, challenge my brain a little: what happens to the mind's eye's creation, when actually trying to re-create that image, on paper (or screen in this case)? So, I tried it out. I let my brain figure it out, I decided not to force Bosch's stylistic approach on to the image, but still recreate the images that are in my minds eye. It turns out, in my case, my minds eye buggers off. If you compare the two images (One is Bosch, one is mine) you'll see absolutely no comparison, even though my intention was to re-create how my mind was processing Newman's words, into imagery. I couldn't even get close! There was a total disconnect between what my mind's eye saw, and what the more rational part of my brain wanted me to see/create.
I think there's a kind of lesson in that.. Not sure what it is yet! Just felt the need to share!