YA Twitter Chat

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Today World Weaver Press hosted a live Twitter chat about young adult fantasy.  I joined the two fabulous YA authors Michelle Lowery Combs, author of Heir to the Lamp and Solomon’s Bell, and A. E. Decker, author of The Meddlers of Moonshine and The Falling of the Moon, to talk about the challenges and rewards of writing YA fantasy.

For those who weren’t able to make it, I’ve posted below my answers to the questions World Weaver Press editor Sarena Ulibarri asked (and a few that didn’t make it in to the Twitter chat).  And here are my questions for you:  If you pick up a book that intrigues you, and then you spot a YA label on it, does that impact your decision to read it? And… what do you what to see more of in YA?

I would love to hear from you!  Feel free to post your comments, or even Tweet about them.  To find the Twitter chat from today, simply enter SFFLunch into the search box on Twitter.  Happy reading!

In a few sentences, please briefly describe your books for our #SFFlunch guests.  OPAL and CHAR are my first two books in the trilogy Fae of Fire and Stone and I am currently finishing up the 3rd book, BLOODSTONE.  My books each chronicle a young woman’s coming of age in a world where humans live alongside the shape-shifting, powerful Fae. The protagonists of OPAL and CHAR are Fae women who struggle with the impact of their powers and their human and Fae relationships.  The protagonist of BLOODSTONE is a human woman, a farmer’s daughter, but with some surprising gifts of her own to offer.

What’s the most rewarding thing for you about writing for a younger audience?  Knowing how emotionally charged most YA readers are.  They are almost never ambivalent—they will either love or hate my book, and I welcome that!  Also knowing that I could potentially be the first writer to introduce them to a novel way of looking at things.  I can imagine an African American young woman picking up CHAR because she finally found a YA fantasy with a dark protagonist.  Not one about African American issues (because she’s already read all those) but just a fantasy with a kick ass black heroine!  I love creating the unexpected. I hope my stories are loved, but if not, that’s ok. What I’m not ok with is not making an impact. YA readers expect emotional impact, and that’s a thrill to deliver.

What specific challenges did you encounter in writing your YA books?  Accepting that my books were YA in the first place.  A dad once asked me if OPAL was appropriate for his teen daughter. I told him the bits that might be offensive, but he waved them off.  She can handle that, he said.  That says a lot about YA—readers can and should be challenged by difficult, terrible circumstances and/ or decisions in a book. The best YA does this well.

What’s your favorite part of the book to write? What’s the hardest?  My favorite part are the early scenes that start to come together.  I don’t write chronologically so when two flashes of inspiration knit themselves together, I really feel the birth of a story.  The hardest is almost always the ending.  It’s like boxing up a friendship and packing it away—it’s hard to let go.

If you could spend a day with one of your characters, who would it be and what would you do?  I would choose Vidar, the unwilling Prince of Fae. He’s a contemplative scribe, cruising through ancient libraries for rare magic and old tales.  Vidar inherits a dark past and has his own wrongs to right.  He’s an unstable guy, but has some awesome powers over water he’s newly discovered.  I’d be a mouse in his pocket in a medieval library, then shape-shift with him in the oceans of the third book to speak with a whale.  And I’d witness his transformation from arrogant, angry youth to sober manhood. I guess I’m doing that already, in the writing of BLOODSTONE.

There seems to be a pretty big range in YA fiction regarding what’s appropriate for romance and sexual content. How do you approach these themes in your own YA?  I do what feels right for the story.  But I’m not a romance writer. I don’t delve into erotica. That’s just not what I write.  Many love scenes in my books came about unexpectedly, sometimes between characters I never wanted to fall in love.  Relationships deserve a climax of sorts. We need to treat sex as a part of human nature, not something sinful or disquieting.  We also need to keep in mind the book’s style, not just the age of the audience. If it’s not a romance, an erotic scene may be inappropriate.

YA definitely doesn’t shy away from tough topics: violence, tyranny, societal or environmental collapse, etc. What tough topics have you dealt with in your YA, or what do you want to tackle in upcoming projects?  Throughout my series there is a theme of intolerance and persecution. The Fae are feared. Their lives and heritage are threatened.  Especially in CHAR, we see the threat of genocide, and the emotional scarring of a people undergoing persecution and mutilation.  The persecution of Fae in my books is also symbolic of human fear and destructive control over wild, untamed nature.  OPAL touches on a relationship with an abusive father, deals with grief and coming of age without a mother and an estranged father.  Opal deals with loneliness in growing up, whether your parents are estranged, deceased, or even a loving presence in your life.  In CHAR, Luna learns that power and rage are deadly weapons; she learns temperament in a most excruciating way.  Luna’s story climaxes with the devastation caused by her decisions. Her punishment is harsh.  Also in CHAR, Vidar is a youth with a family history littered with betrayal and murder; he’s embittered by his mother’s abandonment.  I will go on to face all the ugly issues that rear up naturally in my stories. They need to be addressed; our readers expect it.

Surveys report that many readers of YA books are in fact over the age of 30. What do you think is the appeal of YA books for adults?  Adults have grown out of the loss of inhibition. They know the disappointments that come with responsibility and routine.  Yet adults well remember a time when the magic of life was still roaring through their veins, and they miss that.  Who doesn’t wonder what other stories their lives could have become?  Who doesn’t occasionally get disgusted with their ever-after?  It’s easier, and maybe smarter, to relive the perils of youth through reading, rather than to actually rewrite your own life.  Some go through a mid-life crisis, others read YA.

Michelle, your series is solidly YA, but Ann and Kristina, your books could be considered “crossover.” How much is “YA” a label you identify with, and how much is a label that has been placed on your work?  I have written purposeful YA, and I have written fantasy that I thought was for adults.  My short story If It Rains in Sucker Literary was meant for a YA audience. It’s got a much edgier voice.  OPAL and CHAR were books without an intended YA genre, and I was even surprised by the label at first.  But it definitely fits.  It is such an important and impacting genre that I am thrilled when any of my stories fits into the realm of YA.

Where is your favorite place to write?  Under my sunlamp, in a quiet house, with absolutely no agenda. The setting doesn’t matter as much as the silence. Being a mom of two busy boys, I’ll take all the uninterrupted quiet I can get.

opal-cover-newChar Front Cover 3.16.16

A Character By Any Other Name

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Have you ever wondered how an author chooses the right name for their characters?  Is it just a matter of what sounds good?  Or does meaning play a part, or some deep, personal life experience?  Do authors name characters after friends and loved ones (not me)?  And how important, really, is a name?

I am currently working on my third book in a trilogy and have several short stories published, and therefore have named countless characters, and I still wonder how all this works!  In fact, I have been contemplating this since some of my earliest days of writing.  One of the first books I bought with my own money was a baby name book (along with a myriad of five dollar fantasy and scifi novels at our small town Hallmark Gift Store.  I know.  I’m getting old.)  I still have that dog-eared, highlighted, much loved baby name book on my shelf today–and I still use it.  There is something fascinating in flipping through a hefty volume of personal names, from their various and often mixed cultural heritages to their meanings from simple place names to more mysterious or even unknown meanings.  And it always gets me thinking–how does one smash an entire soul into a single sound?  And yet, if we didn’t, where would we be?  Who would we be?

I have been toying with the concept of “being named” ever since I had to decide upon that first character name for the novel I set out to write as a twelve year old.  It was an epic historical fiction involving a family of orphaned children, hand written in a horrendous mess of pages stuffed into a fuchsia three-ring binder.   I cringe when I think back upon how I named my first characters.  One was Elton, after my favorite singer at the time, Elton John.  Another was Star, because I thought it was pretty.  Very little thought went into the ethnic heritage or historic setting of my story, as probably should have.  And my main character had a name all her own.  She was a twelve year old girl (of course) that had outlived the accidental death of both her parents and was left fighting for the survival of her younger siblings against the ravages of slow starvation, a deadly winter and a threating pack of wolves in the woods beyond their dilapidated farm house.  Her name?  Tranquility; Quill for short.  I don’t know if my twelve year old mind necessarily understood the irony in that–I think I just wanted something unique.  But looking back now, I feel as though I’ve been re-introduced to my own childhood psychology!

I have yet to outgrow my odd fascination with names.  In fact, I might even be a bit crazy over them.  There have even been times when I’ve decided there isn’t a name out there that can fit one or more of my characters, and I simply refuse to slap a “My Name Is:” sticker on their shirt.  It’s like when you find yourself grappling for a word that just doesn’t exist in our very finite language–nothing expresses the depth of your meaning, and what comes close sounds too trite or cliché.  So sometimes, I just refuse to play by the rules.  Here’s a snippet from my short story Pandora, published in Far Off Places online magazine.  It’s a story in which both my main characters remain nameless throughout:

The daughter strains through shadow, ignoring the hair that has been nudged out of her pony tail by the press of the mattress, a soft ceiling to keep her secure. She unpockets her portable sun, squeezes out a little light. The mother speaks in a tense, black scrawl, a scar across the belly of time. “Memories,” the Adidas box is labeled, renamed like an orphan.

And there’s that whole orphan theme again, but let’s not delve too deep in my strange psyche.  In my 2012 novella OPAL, my main character isn’t given a name until the end of the book.  By no means am I recommending such strange conventions to other writers–I still feel somewhat amazed that my publishers didn’t reject these stories outright just for the sake of awkwardness alone!  I did have one editor tell me I really ought to name the main character in a short story I submitted–and I did, but it was tough to do.  I felt I just couldn’t condense her soul into a mere handful of letters!

Perhaps my love/hate relationship with names stemmed from the fact that I never felt a strong connection with my own name.  It’s not so much that I dislike it, it’s just a bit of a mouthful (especially now that I’m married to a Wojtaszek!) and it always irked me that people could never seem to get my first name right.  I was constantly being called Kristy, Kristen, Kris, Krissy, Krista– every feminine K or C name out there but my own.  I always wondered why it was so hard for people to pronounce my name– if you can say Kristine, is adding an “uh” sound at the end really that difficult?  Finally, I learned to introduce myself as “Kristina, but you can just call me Tina.”  To this day, most of my family and close friends call me Tina– I figured no one could botch such a short, simple name as that, and no one ever has.  But I secretly love when someone calls me by my rightful name–and actually says it right!

When it came to naming my own children, I chose simple, easy to say names for that very reason (and because they have a crazy enough last name to contend with).  In fact, they are very old fashioned names too.  If I had had a daughter, she’d have been named Anne.  Simple, endearing, and though it can be misspelled, no one would ever mispronounce it!

I’ve come to the conclusion that names are to people (and characters) what words are to language: a necessary convention, but for the most part, meaningless.  As my nine year old will tell you, say a word enough times and it starts to sound really weird–the same goes for names, and they are odd, if you think about it.  A mash-up of lost meanings, all but abandoned cultures, societal trends and language-dependent pronunciations.  And the spellings of some of these names today?  We won’t go there…  Suffice it to say, it’s the person behind the name who gives it meaning and life.  And that goes for characters, too.  So if you’re struggling to name that wonderfully unique character, or straining over that horribly unique and unpronounceable name some deranged author has given your favorite character, remember; a soul by any other name would be as sweet.

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John Knocking

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Today on World Weaver Press you can read one of my short stories for free.  Yep, the whole story is there, no clicking or signing up for anything required.  It is one of fifteen stories in the ebook Speculative Story Bites edited by Sarena Ulibarri.  My story, John Knocking, is a sort of horrific Doctor Dolittle.  I still do a double take when I see my name associated with horror, but yes, I’ve stuck a toe in that.  I also have a ghost story in Specter Spectacular: 13 Ghostly Tales if you’re looking for more Halloween reads.

So I guess I do have a bit of a dark side, at least around this time of year.  Enjoy!

coffins

 

 

Autism in Fantasy

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Last week, I found myself journeying through two very different realms: one real, the other more real than I ever expected it to be.  The first journey was a vacation to the Pacific Northwest, where my husband, sons and I witnessed some amazing sites, from the stark and stunning landscape of Mount St. Helens to a boat ride off the coast of British Columbia where enormous, black orca fins sliced through the water and humpback tails waved at us from afar.

As if that wasn’t enough of a fantasy, I did a bit of reading on the trip as well, and the fantasy novel I dove into shocked me with a dose of reality I hadn’t expected.  The book was The Reindeer People by Megan Lindholm (who also writes under the name Robin Hobb).  I picked up a copy because I was doing a bit of research on the arctic tundra and I wanted to read a fantasy in that setting.  When I saw that the book was compared to Clan of the Cave Bear by Jean M. Auel, another heartbreaking favorite of mine, there was no question I had to read this.  The Reindeer People did not disappoint (I am now waiting less than patiently for book two to arrive in the mail).  But what kept me most absorbed had nothing to do with the arctic setting, or even the elements of fantasy, well written as they were.  It was a single character, a boy named Kerlew, who reminded me, most painfully, of my own son.

It is one of life’s great ironies when a complete stranger puts your own hopes and hurts into the words you’ve been searching for all along.  30,000 feet up on the plane ride back home, and I was floored as I read.  I have written in past blogs about my son; a smart, compassionate little boy with Asperger’s, and of some of the challenges we have faced together.  While diagnoses of Autism spectrum disorders are becoming more commonly talked about today, the actual help and support for families facing resulting challenges are a bit lagging.  And often, as a parent, I tire of the research, the talks, the fight for more support, for help at home and school.  What I crave are the laughter and tears, the empathy, the stark honesty of another parent who is on the same journey of attempting to mold an iron-willed, awfully intelligent child into the social norms of society.  But suddenly I’d found her, a mother just like me.  She may have been a character in a fantasy novel, in a prehistoric setting dowsed with magic, no less, yet, like me, her biggest challenges were with the sundry, patience-testing tasks of raising a son who is other.

I cannot say that the character Kerlew is an actual depiction of a child with Autism.  None of the author interviews I was able to pull up talk about this, though it seems other book reviewers out there have made the connection as well.  Regardless, it is the most accurate depiction of the challenges of raising a child with Asperger’s I have yet read, aside from A Thorn In My Pocket, written by Temple Grandin’s mother (which I highly recommend).  In awe, I found myself dog-earing pages where the mother and son interactions seemed to come straight from my own life, and put into words examples of my son’s unique way of thinking; Megan Lindholm has so simply and eloquently voiced my own, very personal struggles with my son.  Here’s one such conversation between Kerlew and his mother:

“Why didn’t you come and tell me there was someone to see me, when Rolke first got here?”
Kerlew’s forehead wrinkled with concentration.  “I did.  But you gave me the meat and told me to go outside, so I did.”
“Must one thing chase another out of your head?  Next time, give the message first.  Anytime you have a message for me, give the message first.  From now on.”
“I didn’t know,” he complained as he went back to his meat.  “You never told me that before.  It wasn’t my fault.”

I cannot tell you how many times something that I thought would be common sense was an absolutely foreign idea to my son.  And he, when someone is upset by his inappropriate response, replies in almost the exact same way as Kerlew.  “How was I supposed to know?  You never told me that!”  And though it is tempting, it isn’t right to say, “I shouldn’t have to tell you,” because the fact is, we do.  Children with Asperger’s often need to be told exactly how to handle a certain social interaction, at least until they learn to mimic appropriate behavior.

As an example of this, when my son was in preschool, I puzzled over his aversion to talking on the phone.  One day, when I put him on the phone with his grandma, who he’d been missing, he got extremely upset, held the phone back to me and said, “Tell me what to say!”  I realized then that it wasn’t the phone itself or the other person on the line that made him uncomfortable–he was simply terrified of saying “the wrong thing.”  If the other person didn’t dictate the entire conversation, or if they required from him more than a yes or no answer, he was at a loss.  It’s not that he didn’t have things to tell her; he would beg for me to call grandma so he could tell her about his day, but if I didn’t feed him a sentence or two to encourage him, he would be overwhelmed by the choices of words, by what to say first, by the idea that there must be some right or wrong way to converse, and would simply shut down.  Once, he even said to me, “Tell me the rules,” as if laws had been written somewhere about how to speak on the phone.  Kerlew, on the other hand, seems often to have no qualms about what he says, and says the most inappropriate things at just the wrong time, much to his mother’s despair.  And I can relate to that as well.

Here’s another passage that so mirrors my own understanding of my son:

“It is hard to explain to someone who doesn’t know him.  The thoughts of this moment drive from his mind the instructions of a moment ago.  It is not as if he were stupid.  He is always thinking, but of something else.  He had his own ideas of what is important and what is not.  Two days ago I saw a bruise on his arm, and asked him about it.  Three days ago, Joboam grabbed him there.  Why didn’t he tell me?  Because he forgot, because that was the day he found the patch of frozen berries and dug them up and ate them, and I asked him what the red on his mouth was, so he told me about the berries instead.  And, to him, that makes sense!”

Not only is Kerlew misunderstood (and often abused) by almost everyone in the book due to his differences, but he is also, in many ways, the most intelligent character in the story.  It is he who solves the mystery of a crime that does not even involve him, while no one else but the reader has managed to piece it together by the end of the book.  He also surprises both the reader and his mother now and then with sudden insight beyond his years, and oh, how my son has made my jaw drop, noticing and understanding things I would never have thought he could at so young an age.  Kerlew also takes things at face value, regardless of context, and the other children tease him relentlessly for it.  My son has the same face-value logic, often giving the correct, technical answer, and missing the idea of what’s being asked altogether.  Just the other day, he was doing homework involving cities and states, and my husband asked him if he knew the capital of Ohio.  “Duh,” he said, “O!”  (Well, when you spell the word out, yes, that first O is the capital.)  Meanwhile, he had no idea what was so funny.

What you might not appreciate about Kerlew’s character when you read the book is a desperate need to show others his talents and superiority.  The common reader will find him arrogant and egotistic.  But I happen to know from experience with my own child that this is actually a sign of deep self-consciousness, being aware of his own social failings.  My own son often seeks to make up for his social lagging by proving himself logically or physically superior to his peers.  Like the rest of us, he is desperate to be liked, he just goes about it the wrong way sometimes.

There are stark differences, of course, between my son and Kerlew– Kerlew is quite distant and often fearful of his mother, and he does not like to be touched by her.  Though many children with Asperger’s or autism do not like to be touched, my son is not this way.  He might not be able to stand the sound of an eraser rubbed on paper, and might be overly disgusted by the sight of bare feet, but my little guy is a cuddler and a hugger, especially with me.  Still, the similarities were far more numerous than the differences, and reading about Kerlew was just uncanny.  Which is why I want to reintroduce this out of print book to readers, especially since there is such a strong outcry today for more diverse characters in speculative fiction, including characters on the autism spectrum.   The novel itself excels on so many levels, and if you’re a fantasy reader, you should read it simply for that.  But for those raising a child on the spectrum, The Reindeer People provides something a little closer to home.  Something a little too real in the realm of fantasy.

As we flew back home from our trip, I had to hold back tears as I read.  I glanced at my son where he sat by the plane window, arms out in front of his face as his fingers stroked his thumbs in the repetitive motion he does when excited (the technical term of which is self-stimulatory behavior, or self-stimming).  When he does this, my husband says he looks as though he’s casting a spell, and he really does.  I knew that any one of the strangers on that airplane could look at him at that moment and see his otherness, see nothing but his otherness, and I honestly and absolutely did not care.  I was glad that I had made the decision long ago not to criticize him or try to stop him from self-stimming.  It only comforts him and hurts no one.  He’ll be teased for it one day, of that I’m sure, and he will find other, less visible ways to move his hands and feet, but until then, let him be.  With all the other struggles I face in preparing him for a less than fantastical world, let this one thing be his own.  I smiled through my tears as I watched him, for once finding a way past the constant guilt that dogs me, as he conjured invisible enchantments over a world far below us.

I am so proud of him; proud of his bravery and ever-positive attitude as he overcomes challenges most children will never know.  I am proud of his authenticity, his uniqueness.  He truly is magical to me.

Megan Lindholm, I don’t know if you had any intention of portraying a child with autism in your novel, but kudos to you regardless.  You’ve written something very insightful that echoes across time and realms, calling us all to be a bit more kind, a bit more considerate, and a bit more open minded to those who display some otherness, and to those who love them.  For that, I thank you.

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My son in the plane’s cockpit, giving a thumbs up when the pilot asked if he was ready to fly us home.

 

 

 

 

Sitting Still

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Today was a great lesson in patience for my young son, as I introduced him to a mysterious denizen of this wild world; a bird that vastly outshines even the most wondrous of fantasy characters of my own books.

If we hadn’t been on a narrow country road with steep ditches on either side, I’d have pulled a U-ie.  Because as we passed, I saw a regal little bird I haven’t seen in years, sitting proudly on a cement barrier over a culvert.  Its dark, fanned out crown set above a white throat, and that over-long pointed beak like a thick pair of needlenose pliers was too distinctive to misinterpret.

“I just saw a kingfisher!” I shouted.  My two boys, in the backseat, just looked at each other.  “A what?”  I so wanted to pull a U-ie.  But we really didn’t have time to risk getting stuck in a ditch, as I had to get my older son to his last day of horse camp on time.  But as we left camp, I drove slowly down that country road with my younger son in tow until I spotted the cement barrier and found a semi-flat area to pull off in.  My six year old still didn’t understand what all the fuss was about, and wondered why we were crouched at the corner of a slime-covered creek and a barbed wire fence, haloed by sweat bees, being as quiet and still as we could.  “Mom, can we go now,” he asked several times.  “I don’t think that bird is coming back.”

But if there was good fishing there, then the bird would certainly be back.  Maybe this was a regular morning pit stop for him or her.  Better yet, maybe it had a home in the very bank we crouched upon.  How I would have loved to have gotten a snapshot of one of those regal, squat little birds with a silver arc of writhing breakfast in his long beak.  But the virtues of a six year old, especially one surrounded by whining insects, don’t include extraordinary patience.  More to distract him than because I thought it would actually lure the bird back, I asked if he’d like to hear what a belted kingfisher sounds like, and pulled up a recording on my phone.  I turned the speaker up as loud as it would go and played that strange rattle call over and over.

And suddenly, the real thing called back!

My son, the words, “Can we go now…” still on his lips, was stunned silent as he broke into a big grin.  We both looked out in the direction of several bobbing silhouettes of downy woodpeckers and other small birds in the distant tree tops.  One of those black blobs was our guy– he’d heard us, and called back!  Or maybe it was our gal–did you know that belted kingfishers are one of the few bird species in which females are more decorated than males, wearing a fashionable chestnut belt that the males lack?

Either way, what a beautiful diversion from our busy morning.  What a great use of an otherwise distracting powerhouse of technology (these phones today!).  What a very vocal reminder that we aren’t the only citizens of this world that stay in touch with one another, and have important things to say.  In fact, some research indicates that kingfishers identify themselves by their unique calls.  Our guy or gal, in calling back, was also in a way giving us his or her name!

But what I find especially fascinating about kingfishers is that they seem to be at home in any element.  They literally inhabit all three realms; earth, water and air.  Two of their toes are actually fused to make them stronger at digging, since their homes are excavated from earthen banks along the water.  And of course, they dive through air and plummet beneath water on a regular basis to feed.  A kingfisher would indeed be a tricky animal to make a character in my fantasy series, Fae of Fire and Stone, since all of my Fae characters take on animal (or plant) forms based on the element they most identify with (earth, water, air or fire).  A kingfisher shape-shifter would be all-powerful indeed!

But those little details about the bird that don’t fit neatly into human-identified categories intrigue me most, and I am so very glad my son and I sat still for a moment in this bird’s realm.  Why shouldn’t the female of this species be prettier than her mate, even if (as scientists seem to have concluded) they haven’t reversed their gender roles?  Why shouldn’t a bird leave the sky and rest in the dark, safe harbor of the earth to raise her young?

And why shouldn’t we sacrifice a moment of our morning, listening for the sound of her name?

writing bird

 

Speculative Story Bites

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On August 9th, World Weaver Press will release a new e-book called Speculative Bites, which you can preview now on Amazon.  You can also add it to your Goodreads to-read shelf in the meantime.  Here’s the book description for your appetizer:

Fifteen bite-sized stories, offering a sampler platter of fantasy, science fiction, and paranormal horror. Within these pages, you’ll find flower fairies, alien brothels, were-bears, and sentient houses. Step inside a museum where all the displays are haunted, follow a siren into the underworld as she searches for Persephone, and discover the doors that lie, literally, behind the heart.

That last bit about the doors?  That would be my story, John Knocking, and actually, it’s not for those with a weak stomach.  Think Doctor Dolittle meets Stephen King’s Pet Sematary, and you’ve got the taste of it.  Oh, and toss in a love story, because we all need a bit of dessert.

Stay tuned for more and happy reading!

Speculative Story Bites ebook cover

 

 

 

Just Another Wrinkled Pea

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I have been distracted from my writing lately by some devastating, but quite interesting, medical issues. I’m going to deviate from the realm of fantasy today in order to share my experience, in case it may be of benefit to others.  But rest assured, my third book in the Fae of Fire and Stone series is slowly, but beautifully, coming along.

Despite the fact that I write fantasy fiction, I do have a degree in biology, and I consider myself a pretty rational person, preferring research-based medicine and the advice of board-certified physicians when it comes to my health. Yet as my chronic health issues have worsened, I have become less able to write and even to be functional throughout the day.  During this struggle, I have surprised my non-confrontational self by arguing with various doctors over the years, and have even begun dipping a toe into the murky waters of self help and herbal healing.  Most recently, I have had quite a few revelations after pushing for certain blood work and discovering that I have a genetic mutation called C677T, which is among the hotly debated set of gene mutations called MTHFR.

If you haven’t heard of MTHFR, I’ll let you do your own Googling, and when you do, depending on the context of your search, you will either come up with myriad sites that tote the importance of testing for this set of gene defects, lists of health conditions the mutations can potentially cause or worsen, and personal accounts of how the right supplements and lifestyle changes restored a person’s health OR you will get sites calling MTHFR genetic testing and folate supplementation unnecessary and even unsound science, and claims that doctors and naturopaths supporting such testing are really just out for money from those who are desperate enough to try anything.

What doctors do agree on, as far as I can tell, is that MTHFR gene mutations can, and often do, cause elevated levels of the amino acid homocysteine, and elevated levels of homocysteine can potentially cause visual disturbances, brittle bones, and heart conditions and is considered a risk factor for blood clots.

While I have not had the pleasure of experiencing a blood clot or heart failure, others in my family have, especially one other–my aunt–who currently has “unexplained” blood clots in her lungs and has had more heart surgeries than I like to think about. My aunt and I have been comparing symptoms and sharing test results with each other for a while now, because aside from the heart conditions and blood clots, we seem to have a lot in common.  Both she and I have been recently tested for MS, and my aunt is still undergoing testing, due to many neurological issues.

When I discussed my own shaking vision and tingling hands and feet with my doctor, she asked how long it’s been going on for, and my answer kept changing.  A few months.  A year.  No, wait, I was tested years ago for MS, I forgot!  So five years, at least.  But then I remembered sitting in some of my high school classes, repeatedly blinking and wondering why my vision seemed suddenly blurred at the end of each school day, and why I was so horribly, horribly tired.  I realized then that I couldn’t say when it began; it’s just always been–I’ve always thought of myself as weak and clumsy, easily fatigued, with poor vision and almost constant abdominal pain.  But I was too young to know what was normal, and too embarrassed to talk about it back then.

It wasn’t until shortly after having children that all hell broke loose with my health. First came a diagnosis with low thyroid, then an appendectomy, then gall bladder attacks that left me curled on the floor in agony after eating nothing but a salad.  My gall bladder was removed after testing showed it was only functioning at 5%.  After having two colicky, constantly crying babies who both had acid reflux (but were otherwise healthy) I decided my worn out, exhausted body was done, and opted for an IUD, which my body quickly and painfully rejected; thankfully I had the device removed before it punctured my uterus.  As the lower abdominal pain continued, however, I found out I had reoccurring, large fluid-filled ovarian cysts.  I was also tested for rheumatoid arthritis because my joints ached, and several times a week I would almost fall because a knee would hyperextend or “pop” and cause extreme pain.  I wore braces to support my wrists–one doctor said it was tendonitis, another carpal tunnel… all I knew was that there were entire months where I could hardly use my wrists or thumbs the pain was so severe.  And every once in a while, I would wake up in the middle of the night in a sweat, with a pain that felt like a hot poker stabbing through my insides (these episodes, I think I understand now, were tiny kidney stones).  Every time I would lay on the bathroom floor wondering at what point I should wake my husband and go to the ER.  But what could they do for me?  None of the doctors I saw did anything for me, except to occasionally bring up the option of anti-depressants, which I refused, despite the fact that feeling like an 80 year old in my late 20s and early 30s really was quite depressing.

The fatigue, dizziness, blurred vision and myriad of abdominal issues continued relentlessly, seemingly no matter how healthy of a diet and lifestyle I had.  I underwent a lot of testing, including an MRI to rule out MS.  All of it, I was told, came back completely normal.  Until I dragged myself into the doctor’s office one day with heart palpitations and severe fatigue.

I was visibly pale, the physician’s assistant noted, and my heart was beating too fast, though they were unable to capture the palpitations on an EKG (years later, I would be sent from a walk in clinic to the ER for unusual heart rhythms, only to be sent home again). I explained that I had dealt with chronic low iron most of my adult life, and my PA agreed to test my iron levels, but he also noted that my blood calcium levels, which had been tested in the past, were “a bit high.”  My doctor had never informed me of this, apparently because she did not consider them out of range.  This led to more testing, and a referral to an endocrinologist, who told me my levels indicated I had hyperparathyroidism.  My new endocrinologist did a sestamibi scan looking for a culprit parathyroid tumor, but he was unable to find one and did not feel comfortable diagnosing me with hyperparathyroidism.

This was where my foray into “self-help” truly began, because despite the advice of my endocrinologist to simply watch my blood calcium levels and continue to eat and supplement with plenty of calcium, I was learning from a bit of research that those were the exact WRONG things to do—that the longer you sit on high blood calcium levels, the sicker you will become, and supplementing with calcium when you already have high blood calcium levels could potentially cause a stroke. Not for the first time, I began to doubt that my doctors actually knew what was going on with my body.  But for the first time, I decided to do something about it—I called and had a consultation with Dr. Norman from the Norman Parathyroid Clinic, after which it was determined that I did, indeed, have hyperparathyroidism caused by a parathyroid tumor.  I traveled to the Norman Parathyroid Clinic in Tampa, not once, but twice over the course of two years, to have two separate parathyroid tumors removed (you can read more about that story here).  My blood calcium levels are now in the 9s, exactly where they should be, and having been cured of hyperparathyroidism, I should have begun feeling much better.

Yet, a year later, I was feeling worse than ever. I can’t even count all my symptoms, so I certainly won’t list them, but among the scariest were that objects had begun quivering in my vision, I had heart palpitations that took my breath away, and joint pain and fatigue so debilitating that at times, it felt like an effort simply to be awake and breathing.  And all of this was on a daily basis.  Perhaps worst of all were the terrifying lapses in memory that left me wondering for several seconds what I was supposed to be doing, and where my children were.  I can’t count the times I’ve been driving and suddenly overtaken by a wave of panic as I check the mirror to see whether my boys are in the backseat or not (did I drop them off at school yet?  Do they have school today?  What day is it?  What month is it?).  I have learned, like our favorite fish friend, Dori, to “just keep swimming,” aimlessly following the rules of traffic, until my memory returns after a minute or two.  And despite cutting gluten, dairy, vegetable oils, refined sugar and just about every odd ingredient from my diet, the abdominal pain continued from morning until night, and well into the night, until sleep was impossible without popping Tylenol PM before bed.  And that bothered me–I’m just not one to take meds I don’t absolutely need.  Heck, I didn’t even like the idea of taking Tylenol after giving birth!

What could I do but beg for more help from new doctors? Once again, an MRI looking for MS lesions came back normal, as did every other test I’ve had done recently, including all my blood work.  Or almost all of it: I did have high levels of B12 and folate.  My doctor’s response to this was to say it was odd, but the levels weren’t so extreme as to be worrisome to her, and that I should just stop taking any supplements with B12 and folic acid in them.  So despite reading that these are water soluable vitamins and it is extremely difficult to overdose on them, I cut out my Women’s One a Day vitamin, the only supplement I was taking with B-vitamins in it.  And felt even more fatigued.

After asking my neurologist about it, she told me I could safely take my Women’s One a Day, that it couldn’t possibly be causing those high levels. What’s a patient to do when her doctors disagree?  Just keep digging!  After my recovery from hyperparathyroidism, I knew first hand that having high blood levels of a mineral or vitamin that aren’t being consumed in excess is NOT normal.  But when I tried to look up what causes high levels of B12, I could find nothing beyond some rare and very serious diseases, including types of leukemia, which I thought would have shown some other odd results in my blood work if I had indeed had them, and which I also could not find evidence of in my family history.

Speaking of family history, my aunt’s levels of B12 are also high, and her doctors have no idea why. These high levels of B12 and folate were what sent me on a quest for answers, and the relationship between folate and MTHFR gene mutations caught my attention pretty quickly, which is why I sought out another doctor and asked to be tested for MTHFR; he readily agreed.   Meanwhile, as I read the impossibly long list of potential health conditions thought to be associated with MTHFR gene mutations, I couldn’t help but start ticking things off in my mind.

Blood clots? My aunt.

Heart conditions? My aunt, of course, and I should also mention the fact that my grandfather (my aunt’s father) died unexpectedly in middle age, which the coroner said was from a heart attack, despite him not having clogged arteries or other known predispositions to heart disease.

Malignant Hyperthermia and Nitrous Oxide Toxicity? My grandfather (the above-mentioned) had this as well, spiking a high fever after receiving general anesthesia, and because of this, my mom and I have always had to avoid it.  My aunt and mom also have difficulties with various anesthetics and drugs, my aunt so much so that her last open heart surgery was done without any anesthesia.  Yes, you read that right—my aunt was awake during open heart surgery, with only pain killers to help her through.

Osteoporosis and osteopenia?  I have osteopenia in my hip, but that was likely caused by my battle with hyperparathyroidism.  Oh, but wait…

Hyperparathyroidism and tumor formation? Bingo!

Hashimoto’s and/or low thyroid? I’ve got that, too, as do many of the women in my family.  In fact, after my first parathyroid surgery, I woke to find that 80% of my thyroid had been removed as well, due to a massive amount of inflammation and scar tissue, all of which accumulated during those years when doctors kept testing my thyroid and telling me my levels were fine.  Obviously, my thyroid disagreed.

There are too many others to list, including MS and demyelination of nerves. There is even research being done on brain atrophy in those with a C677T defect.  And yes, autism spectrum disorders are also on the list, and I do have a son with Asperger’s.  But let me reiterate—these are only possible associations.  Having an MTHFR gene defect does not mean that you will develop any of these conditions, and doctors can’t even say for certain that a person with an MTHFR gene defect is at higher risk for them.  Unless you have high homocysteine, which does put you at risk for certain things, as I mentioned earlier.

So upon receiving my MTHFR lab results stating I am heterozygous for C677T, I admit, my first reaction was, “This is it! This is what is affecting me and my family!”  But despite my failing memory, I did recall enough from Genetics 101 to know what heterozygous means.  It’s the old round pea versus wrinkled pea that every biology student is familiar with.  Basically, for every gene there are two alleles, which both carry the potential for expression, one dominant and one recessive.  When a person has two of the same alleles for a gene (two Rs for round peas or two rs for wrinkled) it’s pretty obvious what their peas will look like (if humans had peas).  But what happens when you have one of each, as is the case for a heterozygote like me?  Well, that depends on which is dominant, R or r.  For the peas, R (round) is dominant, so a heterozygous Rr pea plant has pods with round peas.  Looking at those plants physically and functionally, you wouldn’t be able to tell a difference between an RR plant and an Rr plant—they would both forever produce round peas.  So if I’m heterozygous for the gene C677T, it should really only mean that I could have passed that recessive allele on to my children, but that, physically and functionally, I am just like a person who doesn’t have the gene mutation at all—ie, I should be perfectly healthy (with plenty of round peas).  So maybe this wasn’t the silver bullet I’d thought it was.

From my very basic (pea-brained) understanding of what it means to be heterozygous, it made perfect sense that my doctor’s note on my lab report said, “The presence of this mutation in the heterozygous state is not an independent risk factor associated with increased risk of hyperhomocysteinemia (high homocysteine), venous thromboembolism or ischemic cardiovascular disease.” But then, what confused me was his very next statement, which said that if my homocysteine levels were found to be high, they would need to be corrected.  Wait, what?  Why would my homocysteine levels be high if I’m only heterozygous for this gene mutation?  What kind of freaky Rr pea plant produces wrinkled peas?

Apparently there’s a thing called Compound Heterozygocity, which Wikipedia has a page on—if you’re interested, you’ll get your fill of wrinkled peas (and maybe a few more brain wrinkles, or at least a wrinkled forehead, like I did). Basically, some genetic mutations occur across various different alleles, not just one set of alleles, and some are even affected by environmental factors that can cause sudden expression of a disease.  According to Wikipedia, Tay Sachs and Sickle Cell syndromes can occur in heterozygous individuals. So, yikes, there are more cases of wrinkled peas than one may think!  So could my heterozygous gene mutation actually be causing some of my chronic health issues?  Could it be that among the cluster of associated MTHFR genes (which weren’t shown on my lab report because they weren’t all tested for) I have another associated mutation, which, in combination with my heterozygous C677T, is causing some expression?  Or could I be more suseptible to environmental factors activating expression of these gene mutations?

This is where, as far as I can tell, there hasn’t been enough long term research done to say for certain. But that doesn’t mean some of us heterozygous MTHFR folks aren’t producing wrinkled peas, and while the link between myriad health concerns and MTHFR gene mutations have not yet been proven, neither have they been disproven.

It won’t take long in the MTHFR Googling process before you discover that those with an associated gene defect are unable to tolerate folic acid, and do much better on a methyl folate supplement instead (by the way, folic acid is actually a synthetic, not a natural, form of folate). Even doctors agree on this; high homocysteine levels mean it’s time to try methylfolate in place of folic acid.

I had to rethink the whole gluten-free diet of mine as I stood pondering the ingredients of my supposedly safe Rice Krispies.  Let’s see: rice, air and, low and behold, folic acid.  Could eating foods and taking a vitamin supplement (my Women’s One a Day) with folic acid have been causing my high folate and B12 levels, even while I experienced a functional deficiency in folate?  It all seemed like déjà vu, as this was just what had happened when I had hyperparathyroidism; I was made sick by excess calcium in my blood, yet my bones were suffering from calcium depletion, which was actually causing the excess blood levels (it’s a vicious cycle that only ends with removal of the parathyroid tumors, or, eventually, death from associated health complications).

I can’t help but wonder if any of this explains my MS-like symptoms, including the vibrating vision, since folate is essential for myelination, and demyelination is a cause for much of the visual disturbances and other symptoms of MS. And there was something else that kept popping up in all these articles I was reading about MTHFR—lyme disease.

In order to obtain that biology degree, I attended a lot of outdoor ecology and other such classes in where I went to college in Michigan’s upper peninsula, even netting and banding birds and trapping, handling and dissecting small mammals.  And over summer breaks, I worked and played in the woods as a naturalist; I was bitten by countless ticks as a young adult.  On top of that, many say that the C677T gene mutation places a person at a disadvantage when it comes to detoxification, therefore causing greater susceptibility to lyme and other diseases.  So despite having had a negative lyme test in the past, I asked my doctor if I could be tested once more.  I have since read that most lyme tests are about as accurate as a coin flip, giving false negatives 50% of the time, and sure enough, my test came back negative again, though I can’t say I have much faith in those results.  And wouldn’t you know, my aunt (yes, that same aunt!) once tested positive for lyme disease, and underwent months of strong antibiotic treatment—not that she feels any better for it today.

I had other testing done, too. Remember those homocysteine levels my doctor still recommended we look at?  Well, despite my being heterozygous for C677T, I do NOT have high homocysteine.  If you are researching any of this, you will undoubtedly come across articles written by doctors and medical facilities telling you there is not enough long-term scientific data to support testing for MTHFR gene mutations, and that blood tests for high levels of homocysteine are all that is needed in order to recommend folate supplementation.  Here is an example from Cleveland Clinic, the very place I went for my MS testing.  If you don’t feel like reading another article, here’s the bit I’m referring to: “There is a genetic test for MTHFR variations. But there’s also a cheaper and more accurate way to test for whether MTHFR variations are causing disease. We simply check the levels of homocysteine in the blood. If levels are high, we can react appropriately. If homocysteine levels are normal — even if there is an MTHFR variation — then nothing needs to be done clinically.”  So, in my case, despite my high blood levels of B12 and folate, despite my family history, despite my worsening, downward spiraling symptoms including many that mirror MS, if my doctor were to look only at my labs and take the advice of this article, he would tell me to…do absolutely nothing?

This sounds a lot like a typical sestamibi scan or another lyme test to me; how many people have an MTHFR gene mutations and yet, just like me, do not have high levels of homocysteine? And how many of those people are chronically ill, perhaps even suffering from serious disability, yet are ignored and denied advice to avoid folic acid and begin taking methylfolate, simply because they failed that one test checking for high homocysteine?  Thankfully my doctor did more than glance at my labs and heed a line or two of textbook advice.  He looked at me.  He took into account my questions, my family history, and my long list of worsening symptoms and, instead of offering an anti depressant, like my previous doctors, he said, “What you’re going through is real.  This is not just in your head.  Let’s see what we can do for you.”  Can I take a moment to give some non-professional advice to all who may be suffering chronic health issues?  FIND A DOCTOR LIKE THIS!

To the medical community, I’d like to ask: wouldn’t it be more accurate to do as my doctor did and test for both homocysteine levels and MTHFR mutations? In the article put forth by Cleveland Clinic, the biggest reason cited for not doing so is cost.  I beg you to glance at the cost of all the testing I’ve undergone through the years, including multiple MRIs.  Had I been given the advice to try methylfolate a decade ago, I have no doubt that none of that testing would have been necessary.  Claiming that testing for MTHFR is neither cost effective or necessary sounds to me just about as ignorant as the out of date protocols for high-blood calcium, which claimed for years that levels as high as 10.7 were normal, no matter your age, even though we now know that children and teens can safely have much higher levels than adults, but as Dr. Norman has tried to make clear, adults should almost always have blood calcium levels in the 9s.  My levels were once 11, just .3 mg/dl higher than what my own doctors were told was normal, yet I was horribly sick and in my early 30s, already on the road to osteoporosis.

Using a child’s standard for an adult means that those suffering the devastating health effects of a parathyroid tumor are being told to watch and wait, essentially to do nothing at all, as I was.

Telling a patient that they do not have lyme disease, without explaining that a negative lyme test has a 50% chance of being inaccurate, is no better.

Doctors and medical facilities claiming testing for MTHFR is a waste of time and money are denying those of us with chronic health issues one more tool to use in assessing our health, especially for those with a family history of potential related medical conditions. No, many of the medical relationships to MTHFR gene mutations haven’t been proven, but I have a feeling many of them will be in the future, and what has been proven is that the gene defects for MTHFR do exist, and can be tested for.  Why wouldn’t we use that in our arsenal of testing, so long as it is explained that the associated risks and medical conditions are only potential, and the test is not a diagnosis of a medical condition?  Wouldn’t that be a bit more accurate data for a patient to come away with than to tell them, despite their suffering, despite their questions, to do nothing?

I know what most physicians would say to that, “We don’t want to cause undo worry.” I’d like to remind doctors that a patient who is coming to you with long term chronic illness is already experiencing undo worry, and any and all accurate information, along with the necessary advice from a doctor, is much appreciated.  We shouldn’t have to do all of this on our own—patients aren’t the ones with accurate data and resources at our fingertips (no offense, Google).  And just because we don’t have a medical degree does not mean we are incapable of understanding a physician’s interpretation of our lab results.  I wish doctors would quit worrying about scaring patients and start empowering us to know as much as possible about our health, so that together we can decide if taking a different supplement and avoiding a synthetic form of a vitamin might be something we can safely try.  Because if a doctor’s motto is still to do no harm, then please understand that for many, by doing nothing, doctors are doing a hell of a lot of harm.

I understand the need for proof, for long term studies. Let’s do them!  Meanwhile, count me as one iota of data—nothing statistically significant, of course, but your patient, none-the-less.  I am heterozygous for an MTHFR gene mutation, I have high blood levels of B12 and folate, I have blood clots and heart problems in my family, and I am NOT well.  So what that my homocysteine is normal?  It’s time I do what I safely can to start feeling better.  It’s time to try supplementing with methylfolate, and stop consuming synthetic folic acid.  And my doctor agrees.  In fact, in my search for a safe multi vitamin, I have found that others agree as well.  SmartyPants Vitamins is now switching from folic acid to methylfolate in all of their products, recognizing the fact that so many of us MTHFR folks cannot tolerate folic acid.

So where am I at? After four weeks of avoiding all sources of synthetic folic acid and three weeks of supplementing with methylfolate, in combination with natural treatment for potential lyme disease (since it can’t really be proven one way or another and I can’t find any harm in doing things like sweating daily to remove toxins, greatly reducing sugar intake, consuming Milk Thistle herbal tea among others to help with detox and boost antioxidants, continuing to eat a diet rich in various leafy greens and herbs, including raw garlic) I have experienced both a worsening of fatigue and a reduction in digestive issues(all that relentless abdominal pain is almost completely gone!).  Most amazingly, I have noticed a reduction in both frequency and severity of visual disturbances; my vision is astoundingly clear, now, and I hardly notice the visual tremor, though it is not completely gone.  I am also no longer experiencing heart palpitations (so far, anyway) or symptoms of low iron.  And best of all, despite occasional deep fatigue, I have moments—hours, actually, of feeling remarkably clear-headed and, dare I say it, healthy.

I cannot say for sure, but it is possible that the worsening fatigue I’ve experienced could be a symptom of die-off from chronic lyme or some other associated microorganism, or it could be a side effect of my body’s adjustment to methylfolate after years (a lifetime, actually) of folate deficiency. The advice of many who have experienced this is to go slow, adjust your dosage as needed and keep a dialogue going with your physician.

I believe I have made very sane, if sometimes difficult, decisions for my body and my health. My doctors have not always given me the best advice in every circumstance, so I have learned to do my own research; I have also learned not to trust everything I read.  I do believe there are naturopaths and doctors out there who will take advantage of people who are suffering, whose previous doctor’s have quite frankly failed them.  But I also believe that there is merit in blood tests and lab results, combined with an individual’s family history and personal symptoms and good, sound advice from a qualified physician.  I also believe in multiple second opinions and faith in one’s own intuition.  I know I did the right thing by ignoring my first endocrinologist’s advice to “wait and watch” my high blood calcium levels.  I also know that ignoring my high B12 and folate blood levels and avoiding all vitamins was not the right thing to do, while being proactive and taking a methylfolate supplement is the right thing to do.  It may take a few months for me to get to a place of true health, but I believe I do have a chance at it for the first time in my life.

Between my doctors’ advice, the research of those who are dedicated to finding and sharing answers, and my own ability to make intelligent decisions, I will find a path to better health. Like the Buddhist advice to walk in moderation, this path will be a middle road; not the stagnant route of indecision, listening to those doctors who would have me follow their textbook protocols and do nothing despite warning signs simply because there isn’t enough long-term evidence behind making any changes, and neither the route of the those who swear off all medical advice of doctors who have failed them, despite the fount of valuable scientific data doctors have to back their advice.

No, I will travel the road where science and medicine are combined with my own intuition, symptoms, and family history. I have an appointment with a hematologist in order to discuss MTHFR testing for my children, since their pediatrician was not comfortable ordering it herself, but did think based on family history that we should have it done.  I will see a neural opthamologist for my shaky vision per my doctor’s request, even though it is improving, and will continue to take his advice.  But I will also give my own experience a bit of credit as well.

Count me as one tiny statistic anomally, if you will. A loose cog in the system, maybe even a freak.  But don’t discount my very real experience, nor the experience of all the other wrinkled peas out there.  As my doctor said, even if we don’t have all the answers yet, what I’m going through is real.  I don’t need an anti depressant or to be told to wait around for my lab results to spontaneously correct themselves.  In fact, all I ever needed was a doctor who listened.

 

CHAR Release Day

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Thanks to all the hard working editors and staff at World Weaver Press, today my fantasy novel, CHAR, has entered the world of published books!  In short, Char is the story of a Fae woman, and her dangerous desperation to save her shape-shifting race.  In honor of my book’s birthday, I thought I’d share a little sneak peek.  You can read a longer excerpt from Char on World Weaver Press.  Happy Reading!

Sneak peek:
Surbas watched from the rafters as the child approached the hearth, his talons piercing the aged wood. The girl was robed in scarlet for the convenience of her caretakers, and appeared from his vantage as a small garnet set within the silver ring of thrones. There were seven of them–there had always been seven, and if the child was who they thought, the Circle would be complete at long last. But was she?  He dove through her memories, plucking them up like frightened mice on the bare rock of her youth. They were dominated by a man, as dark as she and just as mute. He, too, had fire in his eyes, but his image was fleeting.

CHAR is a stand alone novel, second in the Fae of Fire and Stone Series, and sequel to OPAL.

Fire is never tame—least of all the flames of our own kindling.

Raised in isolation by the secretive Circle of Seven, Luna is one of the few powerful beings left in a world dominated by man.  Versed in ancient fairy tales and the language of plants, Luna struggles to control her powers over fire.  When her mentor dies in Luna’s arms, she is forced into a centuries-long struggle against the gravest enemy of all Fae-kind—the very enemy that left her orphaned.  In order to save her people, Luna must rewrite their history by entering a door in the mountain and passing back through time.  But when the lives of those she loves come under threat, her rage destroys a forest, and everything in it.  Now called The Char Witch, she is cursed to live alone, her name and the name of her people forgotten.

Until she hears a knock upon her long-sealed door. 

Interwoven with elements of Hansel and Gretel and The Seven Ravens, Char is the stand alone sequel to Opal, and second in the Fae of Fire and Stone trilogy.

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A Spring’s Respite

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Spring, what a fickle time of year!  We wake to robin song, a bit irritated that they always burst into tune just before the alarm goes off, but happy to hear it still.  The first hints of green unfurl tiny fists beneath leaden skies.  The geese are sounding their party horns and there’s a pair of mallards waddling down the drive.  We start to get the hint, and after a few bright, almost-balmy days, we get around to setting out the patio chairs just in time for snow.

For me, it’s this very season that sets my black thumb to throbbing.  Oh, the things I could plant!  I can’t help myself and pick up a bag of peony bulbs, pining for that heavenly aroma and those perfectly pink, voluminous blooms.  And then I remember that I have to plow the soil somehow, which is overgrown with all the dead of last year’s mistakes.  And because of the multitude of deer that left tooth marks on my seed feeder and ate my newly sprouting giant sunflowers before they had a chance at becoming more than miniature, I’ll have to put up some kind of mesh or wire fencing.  Not to mention the fact that the ideal spot for gardening is half a mile from our spigot, leaving me lugging pails of water across the yard all day.

And so I end up slumped by the window, a mug of tea in hand as I watch Mother Nature’s relentless industry from the temperature-controlled comfort of my own abode.  And that’s when I spot her, a little tuft of soft gray, as still and sober as I, nestled in amongst new growth in the little diseased tree out my kitchen window.  I fumble for my binoculars, then for my camera, amazed that the little Junco has stayed still long enough for me to peer into her tiny, dark eye and wonder.  She starts to perk up after a bit, and lifts her head into the wind, suddenly alert as I snap a quick photo.  Was she napping?  Do Juncos nap?  Could it be that she was as weary at the prospects of labor as I?  Is the daunting business of nesting, laying and long hours of feeding helpless young causing her a moment of stillness, a long sigh in the face of spring?

I don’t know if I’ll get around to planting those peonies or not, but it’s moments like these that drive me back to my books.  What is life like for one little Junco?  What I can’t glean from Cornell Lab and Wild Birds Unlimited, I try to imagine.  If that little bird could have told me all her worries and woes, her vast hopes for a future generation, or given some insight into all the life-altering decisions she would have to make in the weeks to come, what a story that would be!  Such are the inspirations that feed my fantasy series, Fae of Fire and Stone, where I give voice to nature through the lives of human-like shape-shifters that can turn into bird, tree or newt at will.

And so the bag of bulbs sits neglected while I plunge into new research.  What can I say, I’m more dreamer than doer, which only deepens my regard for all the busy little denizens of a cruel and ever fickle setting–one that’s right outside my window.  I’ll get to planting soon.  Just as soon as I finish this next scene…

The Goodreads giveaway for CHAR, a stand-alone in the series, ends tomorrow at midnight.  Kate Wolford of Enchanted Conversation is also giving away two copies in a contest on her fairy tale website.  But if you miss either of these, don’t worry–the book will be available on Amazon, Barnes & Noble and other online retailers April 26th.  You can save it for those blustery days when you just can’t rise to robin song or take flight from your armchair, and find yourself longing to take refuge in your eReader instead.  Take the advice of a little bird, and give yourself a moment’s respite.

Junco2

the little dark eyed junco out my window

Cheeseburgers on the Menu

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Cheeseburgers is what my son called Asperger’s before he quite knew how it was pronounced (and before I knew just how much of an impact it would have on our lives).  “You know, that thing I have that sounds like a cheeseburger?” he’ll say, on the rare occasion he brings it up.  “Yes,” I’ll say, “The thing that gives you super powers?”  Which is our way of discussing his “super senses.”  But these cute little code names hardly hint at the darker side of a syndrome he, and I, will forever have to live with.  Being that April is Autism Awareness Month, and Asperger’s is the misunderstood second cousin of the Autistic super star, I thought I’d take a moment to tell the world a bit more about it, through the eyes of my son and I.  And not, I promise, in any cutesy codes.

This isn’t a blog post for children, but for the adults that pretend to know how to parent them.  So let’s get real for a moment.  It’s all too easy to portray the image of perfection as a parent today.  What with Pinterest photos of ideal birthday parties, parenting articles on how to pack the most nutritious (and most adorable) lunch, and Facebook posts by parent peers showcasing various awards and straight A report cards–it’s enough to make those of us with real children want to hurl our boring lunches all over someone’s party shoes.  And then pop an anti-depressant or two for dessert.

Sure, I can brag, and every once in great while, I do.  And with good reason!  My son has gotten an A on just about every spelling and math test he’s ever taken; he practically taught himself to ride a two-wheel bike when he was five; his teachers all tell me he is the politest child they’ve ever known; and he knows the birthday and age of every member (human AND canine) of our extended family.  Take that, Facebook!  But excellent fact recall, mastering skills through repetitive behavior and obsessive rule following are all common “symptoms” of Asperger’s.  These aren’t things he’s made some great effort to achieve– in fact, he can’t understand why his little brother still needs training wheels and doesn’t yet know how to do simple multiplication (his brother, by the way, is five).

What you won’t hear me (or any other parent of an Aspie) bragging about is how he can fly into a rage if someone looks at him while he’s eating; how he worries himself sleepless over the smallest schedule change; how he can stare at a rotating fan or the minute hand on a clock for half an hour while jumping in place out of sheer excitement; how he gets a huge kick out of tricking people and flat out lying; and that he sometimes struggles to comprehend even basic spoken and written directions or ideas.  What I rarely admit to anyone, even the closest of friends and family, is how often I have to dig deep to find something, anything, to praise him for during a 24 hour period, during which he has tormented his brother and I to the point of tears several times over due to his obsessive worrying over tiny details, his need to interrupt and talk over every conversation, his streaks of uncanny meanness, and his absolute inability to keep any part of his body still and to himself for more than a nanosecond.

Social media tends to spin Aspies as charmingly offbeat individuals–that dateless, nerdy, college-age male whose hyper-intelligence often causes him to be the butt of every joke.  Or the sweet kid no one has the heart to bully once they realize he’s not quite “on the same planet” as the rest of us.  Don’t get me wrong, the whole Wrong Planet idea is a great start in discovering how the world might feel to a person with greatly heightened senses and a lack of an intrinsic understanding of social cues.  But you can’t lump individuals with a common disorder into some sitcom version of reality.  They are still individuals, and if you haven’t spent any real time with an Aspie, don’t spread myths.

For example, many people will tell you that Aspies have no empathy, which is entirely false.  When I nearly sliced my finger off, my Aspie was the first to retrieve a SpongeBob Band-Aid for me, and if ever I am ill and nauseous, his little arms are wrapped around me, because he, too, hates to puke.  How you feel might not always be as obvious to someone with Asperger’s, but when it is, they get it!  Also, I’ve heard it said that Aspies don’t have a sense of humor.  But you aren’t there with us in the car when I hold out my hand for his and I get a foot within a dirty shoe in my palm instead, and giggles erupt from the backseat, are you?

The thing that I most wish everyone would understand is that Asperger’s is really just the extreme version of normal.  Does the sound of nails scraping a chalkboard bother you?  My son is unnerved by the brush of a finger across the page of a book or the sound of skin against certain types of fabric– so much so, in fact, that he will immediately loose his place while reading and get extremely angry with whoever is making such obscene noises.  Would you be worried to the point of distraction if you thought tomorrow you might loose your spouse, your job, or your home?  Well, if my son’s teacher is out sick, who’s to say he won’t get sick, or that the substitute won’t know when to bring him in from recess and he and the other kids will be left outside all day, or that she’ll try to put him on the bus when he’s supposed to be a pickup, and what can he do about any of it, if his normal teacher isn’t there?  And who’s to say his normal teacher is ever coming back, or that the school itself won’t be shut down or set on fire, or a bad guy break in, or…  This is called anxiety.  We all suffer from it at times, but it varies by level for each person.  And for a person with Asperger’s, it is often quite heightened (as it tends to be in those who have to deal with it as well).  An Aspie’s keen senses are also heightened, so that a sound or smell that you or I might not even notice has the ability to literally knock my son out of his chair.

The other thing that most people seem to forget (or never think about) is the fact that all of this doesn’t just make life extra challenging for those with Asperger’s.  What about those with those with Asperger’s?  Parenting a child with Asperger’s is like being thrown a baby to raise, asked to learn a second language and take a night course in psychology, learn the jargon of a doctor, a lawyer and a special educator (IEPs, anyone?) and adopt the patience of a saint all while forgoing your own (obsolete) emotions and personal needs.  Oh, and doing all this from the confines of an isolation ward, because who wants to hear about your problems?  And even if they did, who, out of the rest of the “normal” population with their Pinterest-perfect children, could ever even conceive of problems such as these?  Did I mention I have another child as well, who does not have Asperger’s and who has his own needs, expectations and motivations, which are often vastly different from his brother’s?

Although the knowledge about, and resources for, those living with Asperger’s has greatly improved since the days of Temple Grandin’s childhood (God bless that woman and her amazing mother!) I, personally, still feel most days like I am living in a kind of black hole in terms of support and understanding.  And with the rates of Autism and Asperger’s rising exponentially, I know I’m not the only one who feels this way.  We’ve got a lot of catching up to do, and I will be the last to brag about my understanding of this specific set of nuances, despite all the specialists’ opinions and the multitude of books and articles I’ve sifted through.

While I can only hope that we all continue to grow in knowledge and compassion when confronting those on the spectrum, in the meantime, I’d like to tell the world that Cheeseburgers aren’t so bad.  Having it on the menu day after day can get a bit tiresome at times, both for me and for my son, but we’re making do.  He’d like you to know, though, that his favorite food is actually pizza.  Technically pepperoni and sausage pizza with onions, banana peppers, jalapenos and a healthy dash of red pepper flakes.  Or, in his own code, “Pizza with all the extra spiciness.”  And that is just about the best description of Asperger’s I can give you.  Because he’s really just your typical pizza-lovin’ kid.  And then some.