Steven Spohn: The Real Value Of Hope

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.

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