Waiting for the Sun to Rise

Those of you who’ve followed my column for a while know I try to be honest about what I’m going through. I don’t pretend my life is perfect for many reasons, one being that … it isn’t. As nice as it is to curate a “life” on social media, with just the right amount of natural light to make the green leaves of my miraculously healthy houseplants pop against my spotless white walls, it’s not real. I’m just as much of a mess as everyone else. My desk is perpetually cluttered, my glasses are always smudged, and I can never seem to make any headway on my to-do list, especially lately.

This is a modern-age dilemma. Everyone on social media has experienced that brief moment of reflection: “Should I share this? Should I be this honest?” Some people swear by honesty, while others think it’s a bad idea, that performing vulnerability online will eventually come back to bite you. Personally, I’ve always veered dangerously toward oversharing, at least with certain things. Not a lot of people know what it’s like to live with a disability, so I keep this column as real as possible to help people understand — the ups, the downs, the days of coasting. I’m all right with being in the spotlight if it means lessening some of the ignorance surrounding disability.

Seeing someone talk about the tough stuff reminds me that I’m not the only one going through a hard time, that hard times are a part of life, and that everything is temporary. I will get through this, just like I always have. So, when I do go through a hard time, I try to be honest about it in the hopes that someone, somewhere, might benefit from it.

I say all this because it has been a very rough couple of weeks.

The body gets worn down so easily in times like this, so I’m trying to be mindful of how I’m feeling. My sinus infection is finally starting to go away (maybe, hopefully), so I’m being overly cautious about pushing myself too far. I sleep in when I can and drink as much water as I can tolerate.

And I’m trying to take care of my mind, too. Last week, my dad and I got ice cream in the middle of the day, just because we wanted to. I haven’t been the best at keeping up with my writing, but I’m slowly remembering how to be creative again, how to create things purely for my own enjoyment.

It’s not easy. I don’t want to make it seem like it is. My cat died last week, and to cheer myself up, I watched “Star Wars: The Last Jedi” for the first time since seeing it in theaters. It was significantly better than I remember it (hit me up on Twitter if you want to have in-depth discussions on Star Wars lore), and one exchange really stood out to me.

One of the characters (who will remain unnamed, for those of you who haven’t seen the movie) had just volunteered to sacrifice herself. Leia, played by the late and great Carrie Fisher, initially refused to let her go through with it. “No more losses,” she said. “I can’t take any more.”

In response, the other character smiled. “Sure you can.”

It’s not as poetic as some of the other quotes in the movie, like Leia’s fantastic aphorism: “Hope is like the sun. If you only believe in it when you see it, you’ll never make it through the night.” But I keep coming back to it. When I feel like I can’t take any more, Leia materializes in the space behind my eyes, wizened and regal. Sure you can. And so I keep going.

Life isn’t easy. Not for any of us. And it’s almost painfully characteristic of me to look to a galaxy far, far away for hope. But it’s helped me, and I hope that if you’re going through a hard time, it’ll help you too. You’re not alone. We’re in this together. And when you find yourself at your breaking point, you may just find it within yourself to take one final loss before the sun rises.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.