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! 🙂

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.

And 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.”

 

And this is the last week, folks, so breathe a deep sigh if you’re tired of reading about Parkinson’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.

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 the 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.

Here’s more of Parkinson’s by the alphabet! April is PD Awareness Month, so I’m doing my part to share information about the disease, its symptoms, and its treatment. 

H is for History. In 1817, James Parkinson, a British apothecary published a treatise called, “An Essay on the Shaking Palsy.” The name Parkinson’s Disease caught on in the 1860s. Since the 1990s, researchers have isolated several genetic components of Parkinson’s. Not all PD seems genetic; not all pretty-obviously-genetic PD has any of the already-discovered genetic components. PD is most likely an umbrella term and we will continue to discover more. The hope is that we may be able to develop targeted treatments for certain genetic variations.

I is for Insomnia. Parkinson’s can lead to all sorts of sleep disorders–insomnia, excessive daytime sleepiness, and/or REM sleep behavior disorder. The latter means that people with PD may act out their dreams by punching, kicking, talking, yelling, and otherwise moving in their sleep.

J is for Michael J. Fox (kind of–J is hard). His foundation spends 88% of every dollar directly to PD research and he’s been a great spokesperson for PD. Hopeful some of the research will pan out for more treatments and delay of disease progression!

K is for Karegiver. (I know. It’s not. Deal with it.) Gary and I usually use the term care partner, because sounds more like a give-and-take and less one-way. I don’t have PD, yet I live with it everyday. When I call to talk to Gary, I can judge what type of day he’s having from the sound of his voice within the first 20 seconds–how symptomatic he is, etc. I understand his disease and symptoms better than anyone else who doesn’t live inside his body. I remind him to take meds. On bad days, I do a lot more around the house and for the family than either of us wish I had to–and I try to do so with a willing and open heart, though that’s not always successful. We cope with all the emotions together. We plan for contingencies. We figure out the best way to address new symptoms and challenges. We process the fact that there will always be new symptoms and challenges–our lives together will need to continually adapt so we can snatch the most joy possible. I never imagined dealing with an incurable, degenerative neurological disorder (ain’t that a grand phrase?), yet sometimes life means we have to step up and find ways to deal with the unexpected. On bad days, it’s exhausting and overwhelming and my anxiety can run away with me. On good days, there’s a pureness and beauty to the fact that we hold tight to love in the midst of struggle.

L is for Levodopa. Levodopa is the main “gold standard” drug treatment for PD. It converts to dopamine in the brain, which allows your brain to give messages to your muscles (and other things). If you’re taking levodopa, you need to take carbidopa with it–carbidopa prevents the levodopa from being broken down before it reaches the brain. The main PD medicine is a combination of levodopa and carbidopa in various proportions and strengths. You may have heard of “Sinemet” or “Rytary,” which are both different types of levo/carbi-dopa.

M is for Mental Health. PD causes a host of mental health issues such as depression, anxiety, and apathy. This isn’t “I’m depressed because I’m sad about having PD” kind of thing or “I’m worried about what will happen with my PD”–this is depression and anxiety as primary symptoms of the disease itself, due to the physical changes in the brain. Same with apathy, which is like depression’s less-understood cousin. For some PD patients, the mental health symptoms can be the most severe symptoms of all. They can also be harder for caregivers to understand and cope with. Many folks with PD take anti-depressants and/or anti-anxiety medications. ECT, electroconvulsive therapy or “shock therapy,” is also a particularly efficacious treatment for depression related to PD. Today’s ECT isn’t like the images you may have in your head from “One Flew Over the Cuckoo’s Nest,” though it is nevertheless scary to think about one’s brain being shocked until it causes a seizure. One doctor likened it to a hard reboot of a computer, resetting the brain to its normal equilibrium. There are real risks with ECT, most notably memory issues, but it’s something that doctors consider depending on the severity of PD-related depression.

N is for Neurologist. If you have PD, you should see a Movement Disorder Specialist, not just any neurologist. An MDS will have the best ability to help manage symptoms and understand the disease. If possible, go to a Parkinson’s Foundation Center for Excellence. We travel 2.5 hrs each way to see an MDS at Vanderbilt and it’s worth it. Many people–especially younger patients–wait a long time for an accurate diagnosis, since even many neurologists may not think about Young Onset Parkinson’s as a first option. If you have some of the early warning signs I discussed under E, then do consider finding an MDS from the beginning. You’ll eventually need a team of doctors dealing with various aspects of the disease, but the MDS is the most important. Find a doctor who treats you with respect and caring.

Imagine the joy of the snail when it finally gets there!

I’ve sent off my “final” edits for Waxing Moon, book two of Calling the Moon. We’ve had the book blurb and tag line approved.

Now to continue progress on book three!

Hi folks! April is PD Awareness Month, so I’m using my blog to re-cap some of the other social media postings I’ve done on PD so far.

Let me start simple: Parkinson’s doesn’t just affect old people. About 2% of the folks with PD are under the age of 40. If you’re diagnosed under the age of 50-55 (varies by doctor and by research study), it’s considered Young Onset PD. My husband Gary was diagnosed at 30, about 5.5 years ago.

A is for Akinesia, the loss of voluntary muscle movement. With PD, muscles become stiff and difficult to move. Legs, neck, and shoulder muscles are often the first affected. You’ll notice most people with PD lose their natural “arm swing” when walking–one (or both) arms will hang stiffly down at their side instead of moving with the rest of the body. When akinesia affects the face, someone with PD can have a “masked” appearance and it can be hard to read someone’s tone–are they mad? Was that sarcasm? Was that a joke? Who can tell!

B is for Bradykinesia, slowness of movement. If you see someone with PD moving very, very, very, very slowly, thinking slowly, talking slowly, that’s bradykinesia. It can take someone whole minutes to stand up out of a chair–you can practically watch the steps. Shift weight. Shift weight more, move hands to brace self. Close fingers on armrests, put weight on toes, lever up slowly so slowly, straighten legs, straighten back, etc. That’s bradykinesia.

C is for Cognitive. PD isn’t just a movement disorder; it also affects cognition for many people. People with PD may experience issues with executive functioning, memory, slow thinking, difficulty finding words, etc. Executive functioning includes attention/focus, organizing tasks and behaviors, decision-making, planning and prioritizing, impulse control, and working memory. One common problem is that people with PD can have a hard time remembering to take their own medication, which then leads to a symptom spiral and even more difficulties. (This is something Gary and I struggle with; we’ve gone through many systems to try to make it easier for him to take his meds on time.)

D is for Dyskinesia, involuntary body movements (often repetitive) that can look like twisting, dancing, swinging, or rocking. Dyskinesia happens when a person with PD has medication levels that are too high. It’s a medication side effect, not a primary symptom of PD. The “gold standard” treatment for PD involves a combination of levodopa/carbidopa to increase dopamine levels in the brain. Dopamine is the compound necessary for the brain to send messages to the muscles and tell them to actually move. PD kills dopamine-producing cells. Because of the ways medication is absorbed in the body, levels of dopamine ebb and flow with medication. When they are too low, you have things like akinesia and bradykinesia (which I discussed for A and B). When they are too high, you have things like dystonia. If you remember the picture of Mohammad Ali lighting the Olympic torch with his arm swinging back and forth, back and forth, that was most likely dyskinesia. If you watched the footage of Michael J. Fox at the Oscars, you will notice he has his hands in his pockets and is kind of shifting his weight from side to side. I believe that’s most likely his way of controlling the appearance of dyskinesia.