Choose Your Own Adventure?

Remember those books from when you were young? The ones that had you searching forDEs4lFYWAAUkvRI rainbow dragons or buried treasure? You’d read eagerly until you got to the decision point: Do you try to steal the opal? Or give it to the witch like she asks?

Well, do I have a surprise for you!!

I’m teaming up with eight other writers at my press to write stories on a brand new blog called Novel Concepts. Our tag line says it all: “where you’re heard until the final word.”

Novel Concepts is a tag-team, short story blog. Each Monday, one of us will post a portion of a short story. At the end of the segment, we’ll offer YOU, the reader, two options for what might happen next. You post a comment with your vote! The majority rules and the next writer will take that choice and move forward.

The other authors I’m working with are romance authors, so I’ll dabble my hand in this new-to-me genre and see how it goes.

If you go to website, you can follow our blog so you never miss a post! That way, your vote will always count! http://novelconcepts1.blogspot.com/p/what-is-novel-concepts.html And while you’re waiting, you can go to the “About Us” page to check out all the authors participating in this crazy endeavor.

Our first story starts TOMORROW!! Squee! Are you excited?? I am!

FLGSs (Friendly Local Game Stores): Our Travels

I’ve been quiet on my blog first because I was dealing with a family health emergency, then because we were on a long and wonderful vacation to northern California and southern Oregon.

And what does my family do on vacations? THAT’S RIGHT! We check out all the local game stores we can find. I thought I’d share something we found in one of the southern Oregon stores…

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…this AMAZINGLY COOL table that lives at Castle Hill Games in Grants Pass, OR. This table was one of the coolest, geekiest things ever I’ve seen. The store owner said that it’s made from multiple layers of epoxy resin set around dice. The crafters used a blow torch and a needle to get every air bubble out! They made it in a dust-free “clean room” and it took months. The edges are d6s; there are dice of every shape, size, and type. The pictures do NOT do it justice.

Castle Hill Games had a great selection of games, a huge number of MTG cards, and a great miniature war gaming area. They also sell dice rings made by CritSuccess…which three members of my geeky family bought, including me.

The owner was super nice, so if you happen to live by Grants Pass, check out the store.

Southern Oregon also houses Astral Games in Medford and FunAgain Games in Ashland, which also seemed like great FLGSs. Among other things, Astral Games features a room with tall tables dedicated to miniature wargaming with a wide variety of scenery, terrain, and other bits & sundry that help your scenario. FunAgain Games has nifty seating including old booths and they have cute demo stations for some games–like the type you’d see at GenCon. Both stores have lots of regular seating for board gamers and MTGers.

We saw lots more on our trip, of course–not JUST game stores–but I really wanted to share that table with you!

 

Waxing Moon – Coming 8/18!

Waxing Moon, book two of Calling the Moon, will be released on August 18th!

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Julie Hall thinks she has the hang of mothering her Werewolf baby Carson, until the night she wakes to frantic barking and finds her house on fire. Arson. Paranormal fire creatures want to kill Carson—and an unknown Were may be helping them.

As if fire-spawning Salamanders and a mysterious Werewolf aren’t dangerous enough, Julie soon faces even closer threats. Her trusted friend Eliza harbors a secret and Julie’s new understanding of Werewolves threatens to tear apart her team. Meanwhile, her relentless enemies will burn everything in their path, if they can’t get to Carson.

Will Julie’s efforts to protect Carson do more harm than good?


If you haven’t yet read book one, Dark Moon Wolf, this is a perfect time to check it out and be ready for book two! 🙂 Here’s the Amazon link.

Be on the look out for more blog posts this week, as I catch you up on the last busy weeks!

 

Hooray for 18th Place! :)

I’m not sure I’ve ever said that before.

I came in 18th in the NYC Midnight Short Story Challenge out of pool of 3,000+ writers. I know, I know…that’s not, like, 1st place or anything. But I am proud to be in the top 1% and I’m proud of all three stories I wrote during the competition!

My first round prompts were: science fiction, war veteran, and delivery in 30 minutes or less. I think my story “Abso” is my favorite from the competition this year–I’m pursuing publication for it now.

Second round was: suspense, a tutor and a funeral. My story “Special Things” is definitely one of the creepiest things I’ve written and it ended up feeling very tight and suspenseful.

Round three was an open genre with an undertaker and a sunrise. I went back to science fiction, one of my favorites, and wrote “Find the Light”–the title is what I like least about this one.

Anyway. Happy 18th place to me! 🙂

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A Wonder to Me

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Like many others who’ve written about the new Wonder Woman movie, I was blindsided by the strength of my reaction to the movie. During the early scenes on Themyscira, I blinked away tears caused by the visual impact of a screen full of women focusing on what their bodies can DO, instead of how their bodies LOOK. I eagerly absorbed every moment of Diana’s idealism, her integrity, her compassion, and her code of ethics that refused to let her turn away when she could DO SOMETHING TO HELP.

What a message.

In Diana, we see a person whose tremendous compassion is a source of strength and resolve, instead of something that makes her overemotional, incapable, weak, or naive.

At the end of the movie, I found myself wracked with sobs–literally unable to contain my tears. My husband Gary said, “Are you okay? Are you…are you that happy?”

Yes. Yes, I was that happy. This movie stars a woman who stands for idealism, caring, a belief in love, a belief in the power of beliefs–things which, personally, I have been MOCKED for (and I’m not alone)–and turned those things into a portrait of strength, empowerment, and respect.

This movie showed a beautiful woman and focused on what she can do, not how she looks. I have never been so conscious of the male gaze as I was when watching this movie where it was ABSENT. We see no lingering shots panning Diana’s body. We have no shots up her skirt or down her cleavage. We have no shots framed between her legs. These things were simply not part of the movie–and they are such a commonly-used sign of “here’s your sex object” that we barely notice them, until they are removed. When Diana leaps into the air during the final fight scene and slams back to ground, landing on her feet in victory, her thigh shakes with the force of impact. Unedited. The movement of her thigh, her force, the importance of what she just accomplished–the reality of her body–all these are highlighted, instead of transforming her into a sex object.

We’re trained to think the male gaze is just how women are seen–until they’re not. This movie’s focus on empowering and respectful visual images dismantles any possible argument that objectified images of women are somehow natural or unconstructed, that the camera simply records what is, that the vision BEHIND the camera doesn’t influence what ends up on the screen.

I finally watched a superhero movie and saw myself on screen.

wonder-woman-movie-artworkAnd it was so powerful. SHE was so powerful–not in the sense of possessing power over others (though she kicks a tremendous amount of ass), but in the sense of being completely empowered within herself and respected by others because of who she is and what she does.

Representation matters. Representation creates possibilities. Representation affirms what’s important.

Some people may pick apart Wonder Woman and they may have valid points. I’m not saying it’s the best piece of cinematography ever created.

But I’m saying it’s perfect. I’m so very thankful.

“So I stay, I fight, I give for the world I know can be.”

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Week 4 of Parkinson’s Awareness

And this is the last week, folks, so breathe a deep sigh if you’re tired of reading about 1238f8c1e97790f9900e02bddf7ca22cParkinson’s and you have already reached “Unagi.”

V is for Variable. I like to think of Parkinson’s as a “boutique” disease. Everyone person’s Parkinson’s Disease is designed specifically for them; no one has the exact same set of symptoms and issues. It’s as if some (awful, nefarious, hateful) supernatural being said, “Hmmm, for this one, we’ll go heavy on tremor, pain, and loss of executive functioning. That one will get stiffness, constipation, apathy, and depression. The one over there? Let’s see. We’ll give them hypersensitivity to all PD meds, combined with slowness of movement, tremor, rigidity and hallucinations.” Yes, there’s a larger set of symptoms that most folks with PD experience some of the time, but on the day-to-day, people can have VASTLY different lived experiences with their Parkinson’s. Parkinson’s can also progress at different rates and with symptoms developing at disparate times.

Parkinson’s is likely to be an umbrella term. As we dig into genetic reasons for PD and learn more about which brain areas lead to which PD symptoms, we will probably be able to discuss specific PD sub-types and (HOPEFULLY) target them with specific therapies, including gene therapies.

W is for Walking and gait problems. Parkinson’s often leads to issues with walking, postural instability, and balance. People with PD may have a short, shuffling gait and be unable to lift their feet off the ground normally. When highly symptomatic, people may take very small, quick, shuffling steps, but lean their body precariously forward–like they’re trying to move faster, but their feet are unable to keep up–which can lead to falls. PD also affects balance, so people are more likely to trip, to fall when turning, to have difficulty on stairs. When walking, people with PD may “freeze,” like their feet are stuck to the floor, and be unable to get their feet to start moving again. This freezing is especially common when they are moving from one walking surface to another–like from a carpet to a tile, from one color carpet to another, across any sort of visible dividing line, or even across a threshold. Putting on music or a metronome (or even clicking your tongue in a rhythmic fashion) can help someone start moving again if they are frozen. (Isn’t that interesting?) Falls are one of the biggest risks in advanced Parkinson’s.

X is for eXam. When neurologists do a physical exam to assess someone for Parkinson’s, here are some of the things I’ve seen them do:
– Have the person walk, to see if one arm does not swing, to check for small, shuffling steps, to observe how fast they can walk.
– Watch the person tap their thumbs and forefingers together on both hands as quickly as possible. Do both sides move the same? Can they tap quickly?
– Ask the person to write. Is the writing small? Does it taper off through the length of a line?
– Can the person draw a spiral, from the outside to the center?
– Assess the person’s balance by pushing on their shoulders gently while they are standing. Do they stumble or stagger a step? Can they resist the push?

CAUTION: Unless you’re a neurologist, do not try to diagnose someone with Parkinson’s by doing these things. 🙂 I just think the physical exam is very interesting and I thought you might like to know what it’s like. If you or your loved one has PD and you’ve observed an assessment, what other things have you seen?

Y is for Yes.

Yes, if someone tells you they have Parkinson’s, it’s okay to talk about it and to ask questions. If they don’t want to talk, they’ll let you know! (But it’s weird when someone finds out and then is all HOW ABOUT THOSE METS, because they are super uncomfortable with the idea of disease and disability–feels like a rejection.)

Yes, it’s okay to ask me how I’m doing and how Gary’s doing–even better if you really want to know, if you want to know how my heart is feeling.

Yes, it’s also okay to NOT talk about Parkinson’s sometimes. You can help me compartmentalize and focus on other things.

Yes, it’s okay to complain about whatever’s going on in your life or bitch about some small partner-related annoyance. I don’t have the monopoly on life struggles. If you say, Wow, I wish X would do the dishes, so frustrated, I promise I won’t say, OH YEAH, WELL GARY HAS PARKINSON’S SO SHUT UP YOU LUCKY FOOL. 😉

Yes, it’s also okay ask us to do things, even if you’re not sure if we can. And it’s even better if you understand that we might need to change plans some of the time.

Yes. All if it is okay, as long as you approach me, Gary, life, and Parkinson’s with compassion and understanding.

Z is for Zzzzzz. Sometimes dealing with Parkinson’s is so wearying for both of us. Not just on a physical level, but on a mental and emotional level. I would love a day when I didn’t have to remember to remind Gary about his medications. A day when I didn’t have to consciously stay in the moment to prevent myself from worrying about the future. A day when I didn’t notice and monitor symptoms.

No matter how wearying it is for me, I know it is more wearying for Gary.

I wish we could just have a vacation from Parkinson’s. Like, just a day. A week. Too bad that’s not a thing. But it’s not, so. Day by day.

Last post for Parkinson’s Awareness Month: April may be over, but some of us live with the reality of PD every month, every week, every day, every hour. Thank you for supporting us by reading my posts, by trying to understand, by sending your love, by helping when you can.

Please share your own lives and struggles, so I can offer the same to you!

Be hopeful, my friends.  Life is short and we have not much time to brighten the lives of those around us. Be swift to love, make haste to be kind.

Week 3 of Parkinson’s Awareness

Hi folks, Continuing my April tradition of Parkinson’s Awareness. This year, by the letters. Check out my earlier blog posts to see the beginning of thparkinsons-awareness-month_1e alphabet.

O is for Obsessive, or impulse control disorders. Dopamine agonists are one class of drugs used to manage PD. Agonists act on dopamine receptors in the brain and take the place of dopamine (which the brain is no longer producing). They are prescribed instead of or in addition to the meds that provide dopamine (levodopa/carbidopa, discussed under L). For many people, they can be an effective part of treating the disease. However–and this is a HUGE however–they can lead to extreme impulse control disorders behaviors, such as compulsive gambling, sexual behaviors, shopping, eating, and other things. This major side effect happens in at least 1 in 7 people on a dopamine agonist–and perhaps much more, because it is often hidden from doctors and researchers, due to the shame surrounding the behaviors. Before this was recognized as a problem, there are stories of people literally spending their entire life savings and ending up hundreds of thousands of dollars in debt from gambling. This is an extremely serious problem and everyone who knows someone on an agonist should be vigilant in watching for signs of compulsive and destructive behavior.

Dopamine agonists can also lead to hallucinations and psychosis in some patients. Agonists are often used as a “first step” medication by some neurologists who want to delay starting levodopa/carbidopa therapy. (There’s no great research to suggest delaying levodopa/carbidopa therapy and our doctor is very vocal about using medications that work best to provide quality of life from the beginning–talk to your doctor.) They are also used to supplement levodopa/carbidopa to avoid side effects of higher levels of those meds. However, the compulsive behaviors MUST be monitored very closely–this is very serious.

P is for Pain. Like every other PD symptom, pain can vary greatly. Some people with PD may have little to no pain; for some, pain is their most debilitating symptom. PD can cause muscular/skeletal pain from tight and cramped muscles or bad posture, but it can also involve various types of neuropathic pain. Pain can be invisible, so many doctors don’t treat it seriously enough. Living with chronic pain is exhausting and depressing. It can contribute to a lack of movement and exercise, which in turn causes more muscular/postural issues and worsens the pain in a vicious cycle.

Q is for Questions. Ask me any of your questions about Parkinson’s, Young Onset Parkinson’s, or being a caregiver/carepartner! I will answer all questions.  Tweet me @sessiesarah or post on my FB: Facebook.com/sarahestevens.author

R is for Rage. I feel rage at the universe because Gary has Parkinson’s and my dad has Parkinson’s and Gary’s dad has Parkinson’s. Does EVERYONE HAVE TO HAVE Parkinson’s? I feel rage toward people who don’t understand, who look askance at Gary or treat him differently. I feel rage at people who don’t understand how hard it is, how much this impacts our life, who take their able-bodiedness and the able-bodiedness of their partners for granted. I feel rage at Gary when he forgets to take his medicine or when I think he’s not taking care of himself. I feel rage at myself for feeling rage and for not remembering that it could be much, much worse. I feel rage that scientists haven’t yet managed to find better treatments or a cure. I feel rage when our health insurance refuses to pay for a drug that could help him. I feel rage about the things we have lost.

I don’t like rage. I’m not good at allowing myself to feel it. I’m even worse at expressing it. I swallow it whole and allow it to become sorrow
and depression and grief.

Sometimes it’s good just to say it. I am full of rage that Gary has Parkinson’s. It’s not fair. It is so not fair.

S is for alpha-Synuclein, a protein in the brain that clumps to form Lewy bodies. Researchers are focusing on learning more about alpha-synuclein, how it clumps, why it clumps, where it clumps, what the effects are. The discovery of this protein and its role in Lewy bodies has helped understand the wide variety of PD symptoms and that PD affects many areas of the central nervous system, not just one area. Studies are looking at the genes that cause alpha-synuclein aggregation, as well as ways to prevent clumping or even “vaccinate” against clumping. We’ll be learning more about alpha-synuclein, but right now, we know that it’s a major cause of PD, but we don’t know what to do about it.

T is for Tremor, of course. Tremor is the first symptom people think of when they think about Parkinson’s disease. It’s often one of the early symptoms that lead people to get a diagnosis. Most people begin with a tremor on one side, which then spreads to both sides as the disease progresses. Tremors usually start in the thumb/forefinger or in the pinky finger, but some people notice it first in their foot or other places. External tremors are visible to other people, but PD also causes internal tremors, which the person can feel, but are invisible to others. Any muscle can develop trem
or. As PD progresses, tremor affects both sides, all four limbs, and can affect muscles in the face and other places. Early in the disease, tremors are “resting tremors” and actually stop when the person grabs an object or does something with the affect hand. Later in the disease and when tremors are back, tremors can occur during rest and during use.

U is for yoU. How can you help people with Parkinson’s?

Cultivate compassion. When you see someone with symptoms/abnormal behavior/something you’re not sure about, consider they may have a disease–instead of jumping to the conclusion they are on drugs, coming off drugs, are “drug-seeking,” are “faking it” or exaggerating to be on disability. Realize if you’re in a public situation with someone who has a disability, you are likely seeing them on their BEST day, not their worst.

Love and support the people you know who struggle with disease–and their care partners.

Consider donating to research: https://www.michaeljfox.org/get-involved/donation2.php

Consider signing up for clinical trials as a healthy/control volunteer: https://clinicalconnection.com/study-participant/join

It takes a village. Thanks for being part of our village.

#PDAwarenessMonth