Cyborg report ... ghosting the disabled

Ghosting isn't just something that just happens online. Over the last few years, because of my hearing loss, many people in my social and professional life found communication with me so difficult, they simply stopped talking to me. Not everyone, by any means, but quite a few people found interactions clumsy, and I'm sure part of their discomfort came from not wanting to offend me through some inadvertent faux pas.

I'm not even sure if they were aware of the ghosting. These are all good people, and I don't for a moment believe that their intentions were malicious. However, their uncertainty paralyzed them and often led to inaction.

Of course communication is a two-way street. I didn't help matters, because I was so nervous about mishearing a conversation I rarely interacted with them. In many ways I ghosted myself.

My sense of isolation grew and turned into depression. I felt trapped within my circumstances and my job. I was desperate to escape the haunted house my body had become, so during the first part of the year, I ramped up my online communications, because at least here, I felt like I could talk to people and understand their responses. 

Then over the summer, my audiologist's office recommended I try a new captioning phone that enables me to answer the phone in my home as well as place outgoing calls. With that phone came a new taste of freedom. However, the face-to-face communication issues remained. I've worn hearing aids since my mid-twenties, and my current audiologist has been with me for over twenty-five years. He had nothing to help me and has been advocating a cochlear implant for a couple of years.

Meanwhile, our library director has a friend who had recently gotten a cochlear implant. Like me, this lady had zero percent speech discrimination prior to acquiring her implant. I wrote to her online early in the fall of 2016, and she graciously shared her experience with me. I took the first steps to see if I was a good candidate for the implant. I knew if I hesitated, I might never go forward with the surgery. One thing led to another, and then things cannonballed in good ways.

In just the two weeks since my implant has been activated, I have known a remarkable difference in how I am able to interact with other people. I don't catch every word, and mumblers are still to be feared, but I feel much more confident in face-to-face interactions.

Last week, a lady spelled her name out loud for me, and I managed to pull up her record on our computer system. Prior to the implant, I never could have accomplished that simple task. Right now, I still use a combination of lip-reading and visual cues, but I have interacted with cashiers in the grocery store and students on campus in ways that I have not been able to do in years.

While these incidents might seem insignificant to many, the confidence induced by these interactions has lifted me out of the depression that engulfed me in 2016. I feel more empowered to take control of my life.

I've got a long way to go in my hearing therapy and a lot of hurdles to surmount, but right now everything feels possible. That little bit of hope sustains me. I don't shy away from social interactions, and while I'm not always one hundred percent successful all of the time, each interaction allows me to test my progress and adapt myself to new circumstances.  I am hoping that as my self-confidence increases, then maybe others will feel more comfortable being around me.

And while all of this is a marvelous success story in the making, I still want to talk about the ghosting. This post isn't about blame, because I don't think a lot of people even realize they're doing it. I'm hoping that if I talk about my experience, others might recognize ways they can help their disabled friends.

Living with a disability of any sort is already daunting enough. When you have an invisible disability like a hearing impairment, people often make assumptions: that you're dumb, or you're obfuscating to create problems, or that you're ignoring people because you're a snob. Those assumptions take a life of their own and become labels.

Frustration is already high given the amount of daily obstacles that must be navigated, so what the able-bodied might see as a minor slight--the lack of closed captioning on a movie trailer, or a closed handicapped ramp, or signage without braille--the disabled person, who has spent years staring down obstacle after obstacle after obstacle, sees the final straw that breaks the camel's back. Frustration causes us to lash out, and while sometimes we're heard, often we are ignored, and that just increases our distress.

When I become frustrated and cry out, it's not about you. It's about my own feelings of helplessness. The same is true of many disabled people. We talk and talk and talk, and when no one listens, we scream. Not all of us are famous enough to be heard. So we shout and watch our words drown and when no one responds, we withdraw and become ghosts.

We tend to forget we're worthwhile. We live on the margins. Sometimes we become depressed and that causes us to withdraw even more. We become ghosts.

But there are a few exorcists among you, dear people in my computer. There are the podcasters who, although they knew I am deaf, invited me to be on their shows nonetheless. Even though most of the time, I've had to turn folks down, the fact that people thought to ask me didn't offend me. You made me feel included with something so simple as an invitation.

There are the well-intentioned friends who have listened to me when I become frustrated. Others have offered me solutions--some of which have worked and others I have known about. No matter if I've tried the same thing dozens of times without success, the fact that someone took time from their busy schedule to alert me tells me that you are kind. It truly is the thought that counts. Still others have championed my cause with something so effortless as an RT when I advocated for change. Those small kindnesses add up to daily dosages of hope, and hope keeps the ghosts at bay.

I can only speak for myself, but it's okay for you to acknowledge my disability. You may ask me questions. You may ask me how you can help me. I am not ashamed of my disability any more than I am ashamed of my hair color or my height. Being deaf is a part of me, and I'm delighted to teach you ways to keep myself and others from becoming ghosts, because take it from me: ghosts are unhappy creatures and isolation is no fun.

Cyborg report ... activation

This morning at 9:00 a.m., we activated my implant and programed my processor. Things are interesting right now. I think my brain has forgotten how certain noises are supposed to sound, so it's filling in the blanks with a ringing sound very similar to tinnitus. According to my audiologist, this is not unusual. Some people report hearing a wah-wah sound, others hear a very mechanical sound.

Me ... I get ringing.

For example, the dial tone on my phone sounds like an episode of severe tinnitus. If I listen hard, I can distinguish the buzzing of the dial tone from the ringing noise. Initially, typing gave me little spurts of ringing that is now turning into clicks. Speech is still difficult, because voices come with that annoying ringing.

Except for the ringing, people sound natural to me and so does music. I watched Flamenco, Flamenco on Netflix and I can hear the clapping and the softer taps ... guitars and pianos ... fingers snapping ... a woman's voice ... a sigh.

I heard my cat cry. There is a humming sound in my house ... maybe the refrigerator ... I'll figure it out.

I went for a walk on our nearby walking trail. I was reminded of Mark Lawrence talking about a young boy, who had just had his implant activated. He ran down the hospital halls, making noise to hear the sounds he could make. That was me on my walk today.

Today I heard leaves rustling in the wind, and the wind roaring through the trees. I heard the swish and crunch of leaves underfoot ... water rushing over stones ... leaves ... footsteps on the soft earth ... from somewhere nearby, a tractor ... the wind, rustling through the trees.

And ringing ... although I think the ringing was the sound of birds ... I can't remember how birds sound, but I might someday soon.

Cyborg report ... week 4: Movies watched

Cyborg report week 4: Watching movies, reading, and recuperating has been the name of the game, although I have once more begun writing in something akin to my old routine. In between, I have spent a great deal of time catching up on movies and various series that I've missed over the last year. Today's post will cover the movies, so here are a few that I've watched:

KURONEKO (Kaneto Shindo): In war-torn Japan, a mother and daughter-in-law are murdered by marauding samurai. They swear their souls to the spirits so they can have the power to return as ghosts and take their vengeance on all samurai--that is until the daughter-in-law's husband returns as a samurai. Rather than murder him, the daughter-in-law gives her soul to the spirits and descends into Hell for a chance to love her husband one more time.

Like Kurosawa, Shindo is the master of mood with gorgeously shot scenes and entire sequences where the emotion is conveyed without a word being spoken. My favorite scenes were when the daughter-in-law seduces the samurai in order to murder them. While she makes love to the men, the mother dances in the shadows. During the killing of random samurai, the mother's movements are sharp and decisive, her gaze is hard. But when the daughter-in-law seduces her son again, the mother's movements are sad and slow. It is a magnificent performance by Nobuko Otowa.

ONIBABA (Kaneto Shindo): More war-torn Japan for you, but where KURONEKO was a ghost story, ONIBABA is true horror. The film is set within wind-swept marshes in a remote location, where a mother and her daughter-in-law murder lost samurai for their armor. The pair dump the corpses down a deep, dark hole, and then sell the armor for grain. The story takes off when a bedraggled neighbor returns from the war and tells the daughter-in-law that her husband is dead. The neighbor then seduces the daughter, drawing her away from her mother-in-law, who cannot survive without the girl's help.

When people discuss horror, they rarely use the word lyrical, but I've found some of the most evocative and memorable horror has combined the power of poetry with dark symbolism. Shindo uses the rustling reeds to evoke everything from dread to erotica, and the emotional entanglement of the characters tightens like a noose in every scene. The supernatural aspects don't show up until late in the film, and rather than detract from the story, the ill-gotten demon mask is made more horrific by the mother's descent into madness.

NIGHT AND FOG (Alain Resnais): A thirty minute documentary, which was filmed ten years after the liberation of the Nazi concentration camps, NIGHT AND FOG combines images from the overgrown camps with Nazi footage of the active camps. Resnais creates a poignant memorial to those who died while juxtaposing the past with the present as a warning to future generations.

RAN (Akira Kurosawa): This is one of my favorite Kurosawa movies, but not so much for the King Lear story trajectory. The true joy of RAN is Lady Kaede, played by Mieko Harada. She is not seen until about a quarter of the way into the movie, and then her role is small; however, as the plot progresses, Lady Kaede's role grows into a malignant flame that consumes everyone with her desire for revenge. She is patient as an adder and just as deadly. Her knowledge of human nature allows her to manipulate the men and achieve her goals. Mieko Harada is positively riveting in the role. The movie is a must-see for her performance alone.

KUNG FU PANDA 3 (Alessandro Carloni, Jennifer Yuh Nelson): Don't judge me. It was cute. I haven't seen the first two movies, so I can't really contrast them against the third, but KUNG FU PANDA 3 did have a few laugh out loud moments.

Eating Authors & Booknest's Fundraiser

If you're like me and navigating the post-holiday gluttony, there isn't much you want to do but sit and surf the Internet for some good things. Here are a couple of posts that won't bring you down:

This morning, I am at Lawrence M. Schoen's blog for his weekly Eating Authors post, where I talk about one of my most memorable meals. While you're there, Lawrence is also hosting a giveaway for a copy of his novel Barsk, which will be released in paperback tomorrow. You have until December 29th to enter Lawrence's giveaway. Pop over and say hi ... we'd love to see you there.

In other news, I have joined 99 other authors for Booknest's Fabulous Fantasy Fundraiser for Doctors Without Borders (Médecins Sans Frontières). Donate as little as a pound for a chance to be entered in a raffle for to win books--lots and lots of books--and to give money to this very worthy cause.

The winners will be drawn on New Year's Day. You can check out the list of authors and more details about the fundraiser here.

I'll be around later this week with another cyborg report for you. 

2016 award eligibility post

The following publications of mine are eligible in the novella and collections categories:

THE SECOND DEATH

Novella

The Second Death was published March 29, 2016 and is eligible for the NOVELLA category in all awards.

Save the world, or save his family…

For Diago Alvarez, that’s the choice before him. For unless he wants to see his son Rafael die, he must do the unthinkable: Help the Nazis receive the plans to the ultimate weapon.

And while Diago grows more comfortable not only with his heritage, but also with his place among Guillermo’s Los Nefilim, he is still unsure if he truly belongs amongst them.

In a frantic race to save the future of humanity, Diago is forced to rely on his daimonic nature to deceive an angel. In doing so, he discovers the birth of a modern god—one that will bring about a new world order from which no one can escape.

The Second Death is the final chapter in T. Frohock’s haunting and lyrical Los Nefilim trilogy, which bestselling author Mark Lawrence has called “a joy to read.”

LOS NEFILIM

Omnibus

Los Nefilim (April 2016), which contains all three novellas--In Midnight's Silence (May 2015), Without Light or Guide (November 2015), and The Second Death (March 2016)--will only be eligible for any awards that allow for a COLLECTIONS category. The Locus Award is one of the few that has a category specifically for collections. Likewise, the Lambda Literary award allows for collections to be entered in its various categories.

Collected together for the first time, T. Frohock’s three novellas—In Midnight’s Silence, Without Light or Guide, and The Second Death—brings to life the world of Los Nefilim, Spanish Nephilim that possess the power to harness music and light in the supernatural war between the angels and daimons. In 1931, Los Nefilim’s existence is shaken by the preternatural forces commanding them … and a half-breed caught in-between.

Diago Alvarez, a singular being of daimonic and angelic descent, is pulled into the ranks of Los Nefilim in order to protect his newly-found son. As an angelic war brews in the numinous realms, and Spain marches closer to civil war, the destiny of two worlds hangs on Diago’s actions. Yet it is the combined fates of his lover, Miquel, and his young son, Rafael, that weighs most heavily on his soul.

Lyrical and magical, Los Nefilim explores whether moving towards the light is necessarily the right move, and what it means to live amongst the shadows.

To the best of my knowledge there is no category within the Hugos or the Nebulas that allow for collections, so if you see the Los Nefilim omnibus popping up there, you might want to double-check the category and the award rules prior to voting.