Category: The Ramble (page 151 of 462)

As always, a spot-on post from Steven Spohn, COO of AbleGamers charity for gamers with disabilities. You can find him at his blog, or on Twitter @StevenSpohn.

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The Sun highlighted her light brown hair against the sand like a firefly illuminating a message of love. My arms wrapped around her tightly, holding on as if to let go would be the last I would ever see her. She giggles with the sound of a thousand angels, harmonizing joy right into my soul. Our bodies rolling together across the shoreline of our favorite beach. We laugh as hard as we love.

She stops, causing her body to end up on top of mine. I can feel her heart racing as she lies prone, pressed into my chest. Her eyes dilated, big and bright. I can see the universe. I can see everything in her eyes. I can see my future, and it’s everything I’ve ever wanted.

A warm smile overrides our laughter as the moment turns from play to serious. “I love you, Steve.” Her words breathe life into my mouth, filling my heart and my head with the most joy I’ve ever felt.

We kiss. My eyes close.

When they open again, the white stucco on my bedroom ceiling stares back at me, taunting. I awaken abruptly, realizing that I’ve had the dream again. My heart sinks, and a tear begins to form in the corner of my eye.

Have you ever had a dream that felt so real, so warm and welcoming that when you wake up the realization it was only a dream nearly shatters your spirits?

I’ve had that dream off and on for the last two decades, ever since I was a late teenager and began discovering the concept of love. Although the details change, the color of her eyes, her hair, and even our location, the feeling is always the same. Love in its most pure form and me being able to interact with her as I’d choose.

But it’s not love that shatters my reality. Despite being single now; I’ve been relatively blessed having been in two multiyear relationships that I would say were some form of love. Maybe not the kind of Hollywood writes about that lasts forever and you get your happily ever after, but real love nonetheless.

No, it’s not the love, it’s the physical ability to express that love. For those of you who don’t know me, I have an incurable and untreatable disease called Spinal Muscular Atrophy. SMA for short. Over time my muscles will continue to weaken, and I’ll lose the ability to do very basic things such as feeding myself, swallowing food, and even talking. As it stands, I’m already unable to walk, confined to a power wheelchair for mobility and on a ventilator to help me breathe.

Even with all of those challenges, I’ve managed to find love. Certainly not easily, but with the right person, love allows you to look past things like the challenges of disability to see the person and their true value.

Yet both relationships ultimately ended because of my lack of physical ability. Things that they wanted to do in life that I simply couldn’t participate in. Deal breakers, as they say.

And every time I have that dream I’m reminded of how close I can get to the elusive thing we call love, only to have it snatched away by an unlucky roll of the genetic dice.

Dawn Breaks

On December 23, 2016, a company called Biogen gave me the greatest Christmas present that I have ever received. The first treatment for SMA was approved by the FDA. This new beacon of light was called Spinraza. Studies done over the last five years have shown the amazing effects of the drug. Children who were stuck lying down, barely able to breathe and unable to sit on their own, were using walkers and breathing on their own after only a few treatments. For the first time in the history of humanity, the treatment would finally be available for one of the most aggressive and terminal infant-onset diseases. Spinraza isn’t a cure, but for many people it’s about as effective treatment as you can imagine.

The range of feelings I went through upon discovering that not only was the drug approved but the drug studies showing remarkable performance is almost indescribable. Imagine believing for all of your life that something you wanted with all of your heart wasn’t possible and then suddenly being told that it is possible and shown real, tangible, undeniable proof.

My head began swimming with possibilities. Would I become a dancer as I had always wished I could have been? Would I see if 36 is too late to join the Air Force as had been my childhood dream? Would I give up writing and become a lumberjack, hacking my way through the forest and looking really hot in my ripped plaid shirt?

Who knows. The possibilities are potentially endless. And I do look good in red plaid. The drug effects everyone differently, some regain more abilities than others. Meaning I could take the drug and only regain the ability to use my hand or I could become a salsa dancer. I simply won’t know until I began taking the drug.

But regardless of what the future will hold for my abilities, I now know there’s hope.

Golden Age of Salsa Dancing

A petite woman, 60+ years of age, sits in her manual wheelchair centered in the middle of the show floor. She beams with confidence like a lighthouse through the fog. Her eyes wander and find each of the audience members. As they lock, she gives a warm smile and nod of the head as if to say “you ready for this?”

The music comes on the loudspeakers. It’s soft, but you can instantly recognize it’s a salsa tune. The woman’s hands move to her wheels, and she begins shimmying, shaking the chair left and right. Then a man, who also appears to be in his 60s, walks onto the show floor. He’s aimed at her, walking with purpose. They meet just as the tempo of the music kicks into high gear.

They start dancing in a way that I’ve never seen before. She spins around him in circles. He bends and moves with her in a rhythm you would see from a professional music video. They are completely in sync. Simpatico in every way.

His arm slides along hers. Her chair glides effortlessly around him. The music slows as the dance becomes more passionate, more intense. Finally, with one swell of the beat, he drops to one knee in front of her chair, and they embrace.

The audience roars. Cheers and applause flood the arena. For just a moment in time, we are all one, amazed by this performance that just broke the stereotypical expectations many have for people with disabilities and advanced age.

They make it look easy because for them it is. They love dancing. They love each other.

Like an infusion of spirit, I can feel why they are so inspiring. They give you hope. Hope that you can still find love no matter your age. Hope that someone with physical challenges can dance like that and make you forget about their disability. Hope that anything is possible.

Love Isn’t All You Need, Hope Is

The Beatles got it wrong. Love isn’t all you need. Hope is.

Life is really hard. As of late, life has been even harder in these extremely politicized, tumultuous times. What gets us through these rough periods of time is hope that things are going to get better. While that may sound like a cheesy Hallmark sentiment or lifetime movie thesis statement, hope is what keeps us going.

When we don’t have hope that things are going to get better, when we don’t have hope that there will be good times after the bad, our minds begin to close as a self-defense mechanism to prevent the pain we think is coming. We start letting fear dictate our actions and letting anger influence our every behavior. The days get longer and the nights get colder.

Because if you don’t have any hope, getting up in the morning is much more difficult, moving forward is that much more difficult.

Watching a woman dance from her wheelchair with the love of her life is inspirational because it gives you hope. Your mind begins to latch onto the idea that love is real, even if you’re not feeling it right now, and love is real, even if times are tough right now.

I woke up from my recurring dream just the other night, and for the first time, I didn’t feel any sadness when I realized that the dream was just a dream. I realized that there is a chance I can wrap my arms around someone I love within the next few years.

Hope is your beacon of light during the darkest of times as the tiniest sliver of light shines brightest just before the dawn. The best advice I can give to you for the difficult days ahead is to find the things and people they give you hope. Follow them. Support them. Do what you can to ensure the things that give you hope can continue.

Do not go gently into that good night. Fight. Hold on to your hopes and dreams for the future. Art harder. Live bolder. Become the best and strongest version of yourself that you possibly can. Take care of yourself and your fellow humans.

Love with all of your might, but whatever you do, never give in, never lose hope.

Folks have asked, and I keep forgetting to update it here.

SO HEY HERE IT IS.

Where will I be so far in 2017?

LET US BEHOLD THIS WONDERLAND OF TRAVEL.

Feb 3-4th, Moravian Writers Conference

Feb 25th, Let’s Play Books, Emmaus, PA, Signing: Life Debt, Thunderbird — pssssst, you can order signed books from there and either pick ’em up or have them sent to you

March 31st – April 2nd, Wondercon in Anaheim, CA

April 13th – 16h, Star Wars Celebration, Orlando, FL

April 22nd-23rd, Los Angeles Festival of Books, USC campus

April 27th – 30th, StokerCon, Long Beach, CA

May 5th – 6th, Northern Colorado Writers Conference, Fort Collins, CO

June 3rd – 4th, Bay Area Book Fest, Berkeley, CA

More as I have it!

It is day 10, and the wheels are about to come off this bus.

We have collectively been reminded what history has long taught us: that fascism and corruption creeps in the shadows for a long time, tip-toeing along, but when it’s ready for its big day, boy does it move fast. It’s like a leak in your pipes — maybe you see it, maybe you don’t. And if you let it go long enough, next thing you know, the whole ceiling is coming down, moist with rot. Or, perhaps a better metaphor: it’s like cancer. Ignore the little warning signs for too long and then?

Metastasis.

We are now witnessing an aggressive cancer.

In the last week, we’ve seen a heinous display from Comrade Dumpkov and the Secret Real President, Commandant Gin Blossom. It started off weird and embarrassing, with the administration trying to convince us that optical illusions and variations in the time-space continuum clearly prove that the small inauguration crowd was actually the YUGEST CROWD SIZE EVER. And it ended with a proposed wall and an enacted ban, both designed to keep people out, to wall us up, to isolate us. Children were separated from parents. Citizens were prevented — are still prevented — from coming here. We shut the doors on refugees from countries where they’re trying to escape nightmares — sometimes, nightmares we have helped to foment, by the way, so essentially it’s like burning down your house and then locking our door because we don’t want you in ours. Refugees are vetted. Refugees want to come here because this is — or is supposed to be — a great country. They want to be a part of it. And we’re closing the door on them, on children, on families, on Iraqi translators, on anyone who wants to have a hand in the American Experiment. And, for a bonus round, now we’ve got an Executive Branch who doesn’t want to heed the Judicial Branch. We’ve got institutional knowledge taken off the table and replaced with Commandant Gin Blossom. We’ve got white supremacists writing policy while experts are sidelined and ignored.

This is it. This is the moment. This is our test.

The American Experiment is short-circuiting on the table in front of us. And make no mistake: this is still an experiment. Never before has it been so clear that this democracy of ours is still in its testing phase. We have long treated it like it is a patriotic bulwark, a massive redwood whose presence in the forest is justification enough, whose pillar-like strength is eternal, inimitable, irreplaceable. But now we see: even the biggest tree can have rot in the roots. Even the biggest tree can be damaged by madmen with axes. Even the biggest tree is fragile and needs to be protected if we are to see it stand tall and remain as king of the forest.

This is our test.

For our Democratic politicians, it’s a test to see if you can become what you have not traditionally been: obstructors, warriors, defenders. You have, sometimes to your credit, been the adults in the room. You have been a party of compromise. You have had a big tent with a lot of ideas. But now, though the tent must remain big — bigger than ever — it has become clear that compromise is just a kind of acquiescence. Compromise is appeasement. You don’t convince the monster to leave your village alone by feeding it just a few children. We don’t want Cool Obama. We want Luther, the Anger Translator. We’re mad, and we want you to be mad right along with us. People aren’t protesting for nothing. They’re a giant human Bat Signal, a crowdsourced cry for someone to come and give our voice a vote. The test for Democratic politicians is, will you stand up, stand tall, and stand together? Will you treat this presidency as woefully illegitimate — not merely illegitimate because of the popular vote loss, but also because we have seen evidence of tampering from an enemy government, and because we have seen the structures of command and the architecture of democracy already undergo a grave dismantling. The administration we elected are not builders. They are termites. The test can be, will the Democrats obstruct? Will you say no to everything? Because you have to. You do not negotiate with a cancer.

For our Republican politicians, it’s a test to see where your loyalties truly lie. Are they with a man who barely represents the party, or are they with the nation? Stop scrambling for table scraps, trying to figure out what you can get out of this deal — the ship is sinking, so don’t take time to rob it, take time to try to keep it afloat. Now is not the time to curry favor. Now is the time to have a spine, to put a little steel in your blood. This is no conservative administration. If this were happening to any other country you’d call them a danger, a potential foe. You don’t conserve by making the rich richer but by draining our wallets in order to build some asinine wall. You don’t conserve by selling off our national parks or saying fuck you to endangered species. This administration is overreaching already in its size and power — what happened to your idea of smaller government? The test is, how long will you ignore this overreach? How long will you bow and stoop and scrape, spineless as a slime mold, while this administration steps over you and worse, steps over us, the American public? The test for you is: will you only follow orders? On what side of history will you be? History has shown us what may come, so be wary.

For our press, it’s a test to see if you will pick up the mantle that has been placed upon your shoulders already: you have been called the opposition party, and so it is time to own that with pride, with rancor, with two ink-stained middle fingers thrust up, up, up in a vigorous defense of truth. Up until now, I assume you thought it possible that this was business as usual, that maybe you could cajole access out of this administration, but make no mistake: you are their enemy. This isn’t the usual state of affairs. You can’t just do puff pieces. You can’t give credence to a divergence from facts as it’s all oh ha ha agree to disagree. If given a magical lever to open trapdoors beneath your feet so you could plunge into gator-infested waters, Comrade would not hesitate to pull it. He rails at you daily. He calls you fake news — a moniker earned specifically when you tell the truth. Do your jobs, because if he could take them away, he would.

For the companies of this country, the test is, do you believe only in unfettered profit? Are you in this for the short game or the long? Because the long game means keeping this country around. Money is not neutral. You spend it in one direction or another. The test is, will you stand for what’s happening? Speak up. Speak out. Give to causes. The long game is about keeping this country around — so invest in the hearts and minds of those on the side of good. Do right by us, and we will do right by you. But give into craven tactics or profit-grabs and we’ll boot your ass to the curb and know you were complicit.

For those who were or are Trump supporters, who voted for him, the test is to see how long you feel like this is really working. This bull is bucking hard. Still got a grip on its sweat-slick hide? Do you still feel like this is really where you want to be? Happy he’s made it more costly for some homeowners to actually own homes? Happy he’s going to pluck your wallet to build an impossible wall? Pleased that millions will end up without healthcare — which will only cost all of the rest of us more even as people die? For those who have experienced or expressed regret, good. The test now is, what will you do about it? Will you stand up? The rope is slipping through all our hands, and goddamnit, we need you to close your fists and grab it before it’s gone. For those who have no regret, who see no problem here — the test is one you are failing. Because this is above partisanship. This is beyond two parties. This is somewhere else, some interstitial place beyond the stars and stripes, beyond the America we imagine in our heads. As the old saying goes, if you’re not angry, then you’re not paying attention. And a corollary to that: if you’re not angry at these monsters, then you might be a monster, too.

For the rest of us, well.

For us, the test is not only how we survive, but how we help others to do the same.

The test sometimes is small: finding a calm state, managing to sleep at night. Eating, breathing, taking some time, drinking some water, trying not to drink the whole fucking liquor cabinet or eat every gallon of ice cream in the surrounding dozen zipcodes.

The test sometimes is bigger: protesting, donating to the ACLU or the IRC or CAIR, making your calls, keeping your head on straight for the values that this nation purports to possess. It’s about not being drowned by the noise and the despair and finding some optimism. And optimism is there, some hope is present, if you reach hard through the darkness. The ACLU on average gets ~$4 million in donations per year; this weekend alone, they received $24 million through 350,000+ people (a number that easily eclipses the inauguration attendance). Protests too have been epic, because people are showing up. They’re standing tall, arm in arm, and making it clear that such malevolence does not have our complicity. This weekend there came a moment when I thought, I am ashamed to be an American. But then I thought back to the Women’s March, and I think to all the people I know who are active and engaged, and then I realized: I’m not ashamed to be an American. I’m proud of Americans. I’m ashamed of my government. I’m ashamed of this administration, not of the nation it leads. Ten days in and the president is the most unpopular president in history. It proves that you are not alone. We are not alone. And if we make it out of this — if we can stop this bubbling septic shit-stew from boiling over — then we will have been delivered a timely and necessary reminder that our democracy is not shallow, but deep. That it is not simple, but complex. That even in its pillar-like presence, democracy is vulnerable and demands vigilance and the foreknowledge that axes and rot can still bring down this beautiful tree.

This is it.

This is our test.

And I don’t know what happens if we fail, so study up. Gird your loins. Get clear. We cannot pass it alone, and we’re going to have to hold each other — more to the point, we’re going to have to hold our politicians, our press, our institutions — accountable. It’s bad, but it’s not dire. Not yet. But the checks are unchecked, the balances are imbalanced. Vote. Protest. Support. Obstruct. Demand better. Do better.

And be good to one another.

Today’s challenge:

Write about rebellion.

That can mean whatever you need it to mean for the context of the story. Any genre is doable. As personal or as impersonal as one cares to make it.

You’ve got the standard 1000 words.

It shall be due by noon EST, on Friday, February 3rd.

Post at your online space, then give a link below. Do not post the story in the comments, and please do not email me the story. Just find a place to deposit it online, and drop a link for the rest of us.

Please to rebel.

I received a helpful — sorry, “helpful” — email that asked me to, and I quote, “get back to the writing advice, please.” The core idea of the email being that I’m spending too much time on the blog talking about other things (cough cough the bread and circuses of politics) and not enough time on talking to you about characters and commas and how to defeat the bleak unrelenting despair of being a creative human being.

Or, put differently, I am a monkey doing the wrong monkey dance.

So, though I’ve responded to this sort of thing before, I thought I’d take another moment to discuss this request and provide my response to it.

First, this blog is not a writing blog. It’s not any kind of a blog. It’s just a blog, which is to say, it’s a platform for me to squawk and gibber into the void. Further, like with most blogs, it’s free to you — though, be advised, it costs me a pretty penny to run. Free to you, not to me. Now, my books? They’re the opposite. Those are free for me to write, relatively, and cost you. Which is why my books are for you, and my blog is for me.

Second, I am presently wrapping up the writing of a new book (current title which is likely to change: DAMN GOOD STORY). It’s a crunchier, meatier book on storytelling than what you’d normally find here — it’s still silly, occasionally, but it’s a book that tries very hard to make sense of the art of storytelling. And that means I’m expending a lot of my writing/storytelling advice on that book — so, harder to muster it here, because it needs to go there.

Third, and I dunno if you’ve noticed this, but things are really going slippery in this country. We’re all in a tractor-trailer driving across a frozen lake, man. The back end has gone wobbly. We’re fishtailing here and the ice is fracturing underneath us as we rip forward. I don’t open the news and find much good there — it’s hard to say, OH, THANK GOD THEY’RE PUTTING GAG ORDERS ON VITAL GOVERNMENT DEPARTMENTS TO MAKE SURE THEY DON’T TALK TO THE PUBLIC, YOU KNOW, THE DEPARTMENTS THAT THE PUBLIC FUCKING FUNDS WITH OUR PUBLIC FUCKING MONEY. Our president and his press secretary get up there and spout easily disprovable lies (remember: the duck is a dog, you traitor).

I respect you not wanting me to talk about this.

Honestly, I don’t wanna talk about this shit either.

I’d rather talk about literally anything else. Otters! Bees! Cool new sex moves! Books I’ve read, movies I’ve watched, ancient beasts that I have hunted through eldritch wood! I would much rather talk about writing, or cursing, or arting harder, or poop jokes, or pee jokes (though at least there, our current president allows me to pull double-duty). But I wake up every day and I just peek at the news with one half-lidded eye through gently lifted Internet blinds and boom, it’s like that scene in Terminator 2 where the nuclear blast annihilates everything. OH GOD CHRIST IN SOCKS IT BURNS, IT BURNS. The news isn’t good. It’s not, “Hey, Congress did something nice today.” Or, “Wow, Trump gave a kitten some milk.” Instead you get WALLS FRAUD LIES MUSLIMS ILLEGALS TOMBSTONES OBAMACARE CARNAGE SEND IN THE FEDS.

I don’t want to talk about any of this.

I don’t want any of this.

Some of this is normal run-of-the-mill bad. Some of it is a guttering transmission bad.

Some of it is existentially bad.

So, on the one hand, I get what you’re saying. You want to come here, and maybe you want a vacation from the horror show. I grok that. I do. I want to be that port in your storm (wait that sounds sexier than I intend it). I want to be safe harbor from Satan’s Orgy. (Actually, let’s not diss Satan like that. This is much worse, and Satan’s probably pretty cool — after all, he hosts orgies.)

On the other hand, sometimes it feels like when I get these messages, what you’re saying isn’t that you want an oasis in the shit-show, but rather, you want me to shut up about stuff. Because sometimes your emails have that vibe of disagreeability, as if it’s less that you don’t want to hear about politics and more you don’t want to hear my politics. You want me to do the monkey dance you like, not the monkey dance you don’t.

And while I respect that, I gotta do my monkey dance. Not yours.

So.

I’ll make a deal with you.

I’m going to keep talking about this stuff because, c’mon. This affects me and it affects people who are far more vulnerable than me, and it feels right to talk about. We have a Russian puppet Tyrannosaurus Rex barreling down on us — flanked by a Congress of eager velociraptors — and you want me to talk about something else? You’re telling me to shut up about the T-Rex, and I’m trying to warn you about the T-Rex. So, I’m going to keep talking about it — and if that bothers you that much, you are welcome to leap into the maw of the beast and end up as dinosaur shit.

The offer I’ll make is:

Yes, I’ll keep talking about other things, when I have them to talk about. And even when I’m shrieking and freaking out and loading the DINOSAUR TREBUCHET, I’ll still try to be funny or weird or otherwise “me” about the whole thing. I mean, hell, even this post has all the hallmarks of a good Wendig post, doesn’t it? Poop. Satan. Orgies. Dinosaur trebuchets. I’ll try to keep it all at least a little bit funny, because if the laughter dies, our souls die with it.

I’ll get back to the writing advice, relax. The monkey dance will evolve.

But I’m also gonna keep doing what I’m doing, and if you don’t like that, here’s your money back.

*opens pouch, upends invisible and non-existent coins into your open hands*

*last thing out of the pouch is a middle finger*

*and bees*

*so many bees*

Sometimes I get on Twitter and I have a little fun.

Because if I can’t laugh, I’ll chew through this belt I keep biting.

Please to enjoy.