My Horror: A True Story

My son was abducted overnight, July 12, 2015, 12:15 a.m. to be exact, he says. It wasn’t aliens or a serial killer. It was—is—a brain infection. It has taken me and my family 7 months of utter, unimaginable hell just to get it diagnosed. We are still battling to find him treatment.

His disease is called PANDAS, and it is so rare, that most doctors not only have never heard of it, those that have, don’t even believe in it, even though it is recognized by the National Institute of Mental Health as a medical/physical disorder expressed psychiatrically because of its location in the basal ganglia of the brain. Those that do believe in it are still hesitant to treat because they’ve never done if before.

Six months ago, our son was playing at the river with his friends, his dog, and family. He was eating hotdogs and smores, chasing water skippers, and catching salamanders. He was laughing and smiling. He was living.

Today, our son is unable to go to school. He wears his dad’s shirt pulled over his head, though at times, he goes nude for days. In January/December. He hides all the time because he’s afraid—of what, he can’t clearly define or make sense of. He doesn’t eat, has gone days without food, has lost substantial weight, and hasn’t touched/drank water in weeks. He barely sleeps, can’t touch anything, uses his feet and elbows to open doors and turn on lights, has incontinence, and his pupils are constantly dilated (demonic-like if I didn’t know better and some days I didn’t).

He performs elaborate rituals for the simplest of daily activities. He has a variety of tics (arm swinging, spitting, leg kicking, eye rolling, shirt pulling, head tilting), Tourette’s (it’s not cute or funny at all), and has patterns upon patterns, that if you can’t also follow along with (which is like walking the tightrope over Mt. Kilauea), he goes into an aggressive, psychosis state.

We’ve been to the ER six times. There are 75 holes in our walls, two the size of a cookie sheet, most caused by his own hands, feet, and body. It would be easier at this point to tear the walls down rather than fix them. His behavior has digressed, he acts like he’s four, but he’s eleven, yet sometimes unusually clever. Once very brave, he’s now terrified of everything. We have to circle the block before we go home if people are near our drive. The clock is set for numerous tasks, and no one can move during them or something bad will happen to us.

We’ve met with so many physicians, psychiatrists, counselors, nutritionists, and psychologists, that I have to keep a running log just to remember who I talked to and what was said. After a tip from a social worker, who told us to look into PANDAS/PANS: Pediatric Autoimmune Neurological Disorder Associated with Strep / Pediatric Acute-onset Neuropsychiatric Syndrome, we finally, after a ridiculous amount of phone calls and $1000, were able to order the Cunningham Panel from Oklahoma with lengthy instructions on a blood draw, test tubes, and ice packs included.

But it would pay off. My son tested dangerously high on five out of five of elevated levels of antigens in his body being hijacked by his own antibodies. He only needed to be high for one of them. We believe a scarlet fever outbreak ( a form of strep) brought this on. Hearing this news felt like a win. We found out what was wrong, but now, we have the harder task of finding a physician that will treat him. And fast. He’s redlining.

For all you wonderful people still reading my post – please keep PANDAS in mind. Look it up, read the symptoms, remember them, SPREAD THE WORD, because there are families out there right now suffering unbelievable horror and they have no idea what is even wrong with their child and no one can help them. They and their doctors have probably never heard of PANDAS, so they need every shred of help, advice, tips or guidance they can get.

As far as writing goes, I haven’t had time for fiction, but I am still writing horror. Lots of it.

PANDAS NETWORK

NATIONAL INSTITUTE OF MENTAL HEALTH

INTERNATIONAL OCD FOUNDATION

FOUNDER: DR. SUSAN SWEDO (video)

LATIMER, “One Size Doesn’t Fit All” (video)

 

Goodreads Giveaways

I’m giving away 9 books on Goodreads this October! All signed and sent straight to the lucky winners’ doors. OCTOBER 11-18. It’s free and easy to enter.
Luck be with you–


Grave Echoes: A Kate Waters Mystery (Book 1)

ENTER GIVEAWAY

October 11 – 18

Grave Echoes 2-11-15 Ghostly


Wicked Tempest: A Kate Waters Mystery (Book 2)

ENTER GIVEAWAY

October 11 – 18

Wicked Tempest 2-11-15 Ghostly


Feral Things: a werewolf novella

ENTER GIVEAWAY

October 11 – 18

FeralThings_150dpi_eBook

Story acceptance for ‘The Deep, Dark Woods’ anthology

I am grateful to have a new story acceptance in Christina Escamilla’s The Deep Dark Woods anthology, titled, “Forever, No More.” 

Forever to Jesse, and three other ghosts, is a locked crypt inside the dark woods of the Black Mountain Cemetery, that is until two young children set them free. The woods are about to get much darker, and for Jesse, her forever trapped in the cemetery is no more.

This short story was born the night I found my kids jumping on the trampoline, holding hands, and chanting, “Dead man, dead man come alive, come alive on the count of five, One, two, three, four, five, come alive!”

This creeped me out. My children never hold each other’s hands because that’s ‘so disgusting’. Moreover, it’s a creepy-ass chant when sang by a small chorus of children on a waning-moon dusk. And when asked where they heard it, I was told by my daughter that Sally’s friend taught her it. Sally is my daughter’s invisible friend. For me, invisible friends having invisible friends is a notch up on the horror factor.

Follow me or Christina on Facebook for news about the release date.

New Publication- Triangulation: Lost Voices

Triangulation Lost VoicesI received a copy of one of my favorite anthologies in the mail last week, Triangulation: Lost Voices. Better news than that, I’m in it with my story, “Not All Their Own.” Here’s a little sampler,

Helen came up to me the next day wanting to discuss an urgent ‘matter’. I left Sheli to play in the yard with her doll. Helen pulled me to the side of the house where she’d been gardening and said something was wrong with Cole.

“It’s not him. It is his body, but he is not his own. His voice is distant, as if he’s still beneath the waves,” she said, pointing to the sea. Her eyes grew wild. “There’s something else in him or he’s missing a piece of himself.”

I saw Cole over at the barn. He waved to us. We both waved back, Helen awkwardly so. “He seems fine to me. Are you sure?”

She nodded. “Yes. I’m telling you, he says things that are different. Cold-minded things.”

The first time I’d seen Cole after his return, he helped carry Ezra’s bag of vegetables home, something he would’ve done before too. I remembered studying him then, amazed at how he’d returned and how lucky Helen was.

“He’s probably still getting used to being back. We don’t know where he was or what it was like when he was gone. It might’ve been too awful to speak of. That could be the darkness you see.”

“But he acts as though he never even died.”

“Maybe that’s how it should be.”

She chewed at her lip. “You don’t understand, Lyssa. But you will.”

This year, Triangulation was edited by the talented Jamie Lackey. Other authors include, Melissa Mead, Sean Jones, B.C. Matthews, Jennifer Crow, Alexandra Grunberg, Michael Nayak, and more.

Available now: Kindle | Paperback

In the Works…writing update and other things

It’s true, I’m still writing, though my writing blog has taken back seat to my food blog, not yet made public, “So Easy, A Zombie Can Cook It” (you may have noticed an accidental post on Wilted Winter Greens earlier this month). I’m hoping to have the blog public by fall, but I need to catalog a few more recipes, and they all need to be tested true, preferably with a pic accompanying each. Here’s a snapshot of my latest entry,

“Tropical Smoothie”

Tropical SmoothieSome say happiness is a state of mind. I say you can suck it through a straw.

INGREDIENTS:

  • 12 ounces coconut water
  • 4-6 bite-sized chunks of pineapple
  • 1/2 mango, peeled, about 2/3 cup
  • 1/2 banana (the banana is needed for the tropical flavor of this recipe so wouldn’t work well to swap out with avocado, but maybe a spoonful of vanilla yogurt)
  • 1/2-1 cup ice

Turn on Jimmy Buffet. Throw everything but the fingers into the blender and enjoy!

So, back to writing:

I’m kicking through some projects and starting new ones.

  • New story. Just started and finished a short story that’s been brewing in my head for two years! I told myself that this was going to be the summer to finally write it. It is a little different from my usual, more fantasy than dark fiction, and takes place in an Aztec village in the 1500’s. Not really my thing, but the story persisted in a dark corner of my head and after letting it brew there for two years, 3 days and 4K words later, it turned out to be pretty damn nifty. Still no working title.
  • Dark Island (formerly known as Terror on a Tiny Island, and if you know me, this will probably change again) – currently in the polishing phase. I was trying to meet a 6/30 deadline, but I really think it needs to cool another month before the last sweep through. It’s a bit of a thriller, subtle horror, and complete at 15K. Another one to hit submissions soon.
  • The Dead in Two Creeks Forest (working title) – I’m 1/4 of the way through the 3rd edit, and it’s looking good so far at 65K. This is a classic horror with lots of characterization, and will hopefully hit submissions next spring.
  • The Sickle Moon Tarot: short horror story, 6K. Completed in May, but I’m still undecided if I want to submit or self-publish this one. Better consult the oracle.
  • Kate Waters, Book 3: I have only two written pages, 348 to go!, but will hit the 1st draft pretty hard this coming winter. No set publication date, though if it’s anything like the other two, roughly two years.
  • Shortlisted works: I am keeping my submissions up as best I can. Lots of submissions equals increased chance of acceptances. Currently, I have 4 stories shortlisted with some exceptional markets, and another ten pending. Crossing fingers, toes, and knees.

On the home front:

What I’m reading: Stephen King’s Revival, John Ajvide Lindqvist’s Little Star, Richard Chizmar’s anthology, Dead Harvest, and all the usual mags, Nightmare, Apex, Black Static, The Dark, Lamplight, Clarkesworld, Fantasy Scroll, Grimdark, etc.

Also, it’s been beautiful in Portland. So much sun, I’ve a 100K new freckles, so it actually looks like I have a tan. This is the summer I’ve dubbed as ‘The Summer of Teeth’. Between our three, we’ve had one tooth pulled and lost 7 others so far. I’m not feeding them nails, but these three are of the sort that would probably eat them. Of course, all these teeth and bloody gums is only brewing another story.

Happy Summer!