A Few Hundred Sunsets
It was January 3, 2023. I’d been talking with a guy on Hinge for about a week, and he had asked to take me on a date right after New Year’s. I chose the place to meet—a little rooftop bar called HG SPLY CO, a staple hangout for twenty-somethings here in Dallas. At the time, rooftop bars were my favorite. I was a big fan of happy hour and loved sitting on a heated patio, watching the sun go down over the skyline. So I put on my cutest outfit and headed out the door, singing to Taylor Swift the whole way there. When I arrived, he was waiting for me in the lot. I hugged him hello, and we walked down the street to the bar, chatting about our holidays along the way.
Once we arrived, we walked up the massive set of 50+ steps to get to the rooftop. I didn't prefer stairs, but they weren’t impossible. We both ordered drinks, and I got my favorite: ranch water. Tequila, sparkling water, and lime juice. During the conversation, the sun began to set, and the sky exploded with colors. We stood there in awe of it, taking pictures and talking about our shared love of the night sky. In what felt like an instant, four and a half hours had zoomed by, and we were both smitten. When saying goodnight, he told me he was deleting Hinge. He didn’t want to date anyone else. I was shocked! It was only our first date, and I was a serial dater. So it was even more surprising when I realized I actually felt the same way. He was so brilliant, thoughtful, funny, and kind. I couldn’t imagine pouring a single ounce of energy or time into anyone else.
The rest was history, and before we knew it, it was January the following year. We returned to where it all started—the same rooftop bar. But this time was a bit different. My body had changed over the last year. My legs couldn’t carry me like they used to. My LGMD had progressed, and I had to face the most obnoxious reminder of it: that staircase. Those stairs I’d casually scaled the year before looked like they had multiplied 100-fold. My heart sped up as I looked around for an elevator. Surely one had to be installed somewhere? Why didn’t I think of this? I could feel my cheeks getting warm. We asked, and the hostess just sighed and shook her head. She pointed at the small indoor tables on the bottom floor. No sunset. No skyline. No fireplaces and no picnic tables. I took a deep breath. "We've got this. We'll take it slowly,” he said to me… And slowly we did.
He held one arm as I grasped the banister and inched my way up the stairs. And to be clear, this is not just a regular staircase. You know when you look through a pair of binoculars from the other end, and the room stretches…stretches…stretches for what seems like forever? That’s this staircase. It's a Santorini-level staircase. Steep and dooming and infinite. My lower half felt like spaghetti that had caught on fire. I was kicking myself for taking the year before for granted. But we made it. I got to the top. The sunset was beautiful, the ranch water was divine, and we celebrated the best year of our lives.
And then, a few hundred sunsets later, January had rolled around again. Last week. The date was scheduled in our joint Google calendar, and we got ready in the home we now share together. I was so excited for that sunset. But this year had changed drastically from the last. And the Amanda from two years ago? Little Miss Rooftop Bar? I didn’t even recognize her. Neither did he.
"We don't have to do this," he said, securing the last button on his shirt. "There are so many stairs. I don’t want you to flare up. It's not worth it.” But it was. It was so worth it. Looking back, I'm not sure whether it was more about the anniversary or the muscular dystrophy, and seeing if I could even get up the stairs. Either way, my mind was made up. We were going.
So there I stood, another January at the bottom of those steps. Those backwards-binocular, Santorini, infinite, dooming steps.
"Ready?" he asked.
I inhaled deeply.
"Lean back.”
... Ugh, our new stair-climbing tactic. I grasped the railing as he stayed five or six steps behind me, grabbing me by the hips, gently lifting me, and pushing me forward. It wasn’t exactly the most graceful sight, but still better than a piggyback ride in a fancy dinner dress. And I certainly couldn’t walk up them by myself anymore. We finally made it to the top, and I tried to shake off the funk from that frustrating staircase and awkward entrance. As we approached the bar, I went for my classic ranch water, but then quickly remembered that it triggers my migraines now. I ordered a vodka-something and slowly sipped on it. It was fine. The sky was gray. The weather was cloudy. We waited for the sunset.
And the sunset never came.
I stared out at the horizon, once again wishing I hadn’t taken the year before for granted.
And I’ll be honest, all of this together—it just kinda sucked. The sunset. The clouds. The ranch water. The stairs. The realization that I am, in fact, changing. So slowly, but so surely. It sucked.
But then, we spent the next hour and a half reminiscing about the beautiful life we’ve built together. We recapped our favorite moments from 2024—time with our families, adventures with our dog, and special moments with each other. We talked about the incredible trips we’ve taken, the movies we’ve seen, and the date night spots we’ve discovered. We reflected on everything we’ve done and all the dreams we still have. And just like that, it turned into one of my favorite dates with him.
There’s a quote from The Office that I think of quite often:
“I wish there was a way to know you're in the good old days before you've actually left them.”
I’ve spent much of my life, especially through the progression of this disease, grieving what’s behind me and worrying about what’s ahead. But if there’s one thing these Januaries (and that damn staircase) have taught me, it’s the importance of living in the present. It’s appreciating memories before they become memories. It’s knowing you’re in the good old days before you’ve left them.
On January 3, 2026, I’ll stand at the bottom of those steps again. I don't know if I'll make it to the top, but I know the moments that brought me there and the person beside me will mean far more than the view.
Be well,
Amanda
