It didn't happen all at once. It has been finger by finger, joint by joint, slowly taking away my ability to use my hands and body the way I once could. While the disease itself is considered stable, my body is not. Every day is a physical roller coaster, and something I could do yesterday is not automatically something I can do today.

Each movement can feel like your body does when it is completely exhausted, but you're still pushing to finish that last rep. For me, that last rep might be getting out of bed or moving my leg 12 inches so I can step into my house.

The best way I can explain it is that my body feels like it is filled with bags of wet cement that are half-solid and stiff. Sometimes my muscles are strong enough to push through the spasticity. Other times, they aren't, and I have to compensate. I grab the leg that is stuck or failing and physically move it with my hands. More times than I'd like to publicly admit, I need someone else to help me complete the task.

And when I say "task," I don't mean work or an assignment. I mean standing up, taking a step, or getting into my own house.

That probably sounds like a strange place to begin a story about show posters, but it's the reason they, and art in general, mean so much to me now.

The path I stopped walking

I had always drawn when I was younger, and for my age, I was okay. I understood enough to build a foundation, but I never fully grasped some of the concepts needed to move beyond it. Eventually, I stopped trying to add new skills and followed a different path.

That path mostly involved having my head buried in a computer. I helped clients fix their technology, studied programming and coding on my own, and bounced through college programs that went from graphic design, to architecture, and finally to web design. My life revolved around technology. In many ways, it still does. I still find joy in LEDs, smart technology, and seeing what new things can do.

For a long time, technology was both my interest and my occupation. Drawing was something I had done when I was younger, but not something I seriously believed would become an important part of my life.

As MS made it harder to use a computer as an occupation, drawing was still there.

It was the path I had started down years earlier but never fully followed. Returning to it gave me another chance to learn the skills I never developed the first time. It gave me something I could continue working toward, even while my body was making it harder to participate in the world around me.

One night, one venue, one band

Somewhere within that journey, my interest in show posters grew into something more. I had always loved how an artist could take one night, one venue, and one band and turn them into a piece of art people wanted to keep long after the show ended. Over the years, I started following the artists behind the posters just as closely. Their individual art releases became every bit as appealing to me as the posters themselves.

I follow as much as I can, but I still feel like I know only one percent of what there is to know and experience in that art scene. I see artists creating work for concerts, tours, festivals, and other events, and I wonder how they reached that point. I wonder how you break through and get someone to trust your art with an experience that means so much to so many people.

I haven't designed an official poster for anyone yet, outside of entering a few open-call contests. I've spoken with some of the bigger artists who create art for music and other events, and I've seen how far an opportunity like that can go. Someone like Ben Kwok can have his artwork selected for an entire Dave Matthews Band tour, including tour passes and the band members' personal badges.

To me, that would be incredible. It isn't only about having my name attached to a poster. It's about creating something that becomes part of a memory, something people take home from a night that mattered to them.

Planning a smaller world

My physical world has become smaller and requires more planning than it once did. Thankfully, I'm fortunate enough to have access to modifications that make my home easier to live in. I've also learned how to plan my public existence. Before going somewhere, I need to know where the bathroom is, whether I can physically get to it, and whether it is actually large enough to accommodate my wheelchair. If I've been somewhere before, I can plan around it. If I haven't, I'm taking a chance.

I was reminded of that recently after my dad passed away.

My family went to discuss cemetery plots. I had never been to this particular place before because, well, graveyard. I was already carrying an enormous amount of mental stress, which naturally made everything more difficult physically.

While we were there, I needed to use the bathroom. A worker pointed me toward it, but when I reached the restroom, the room wasn't large enough for my wheelchair to fit completely inside, let alone allow me to shut the door behind me.

So there I was, lifting my legs with my hands and placing them where I needed them to act like peg legs. I balanced myself using the stall wall for support and as a makeshift grab bar.

Don't worry, I gave it the good shake test first to see how firm it was.

Good enough.

I managed to stand up and sit down. It wasn't until afterward that I realized I had forgotten to figure out how I was going to get back up. There was no grab bar, and I couldn't depend on my legs to do it by themselves.

I grabbed the front corner of my wheelchair because it was the strongest point I could reach. Remember, I had already tested the wall. Between pulling on the chair, pushing against the wall, and rotating myself, I eventually managed to plop backward into the wheelchair with both knees hyperextended and locked straight.

After sitting there for a few moments, I used my hands to lift each leg high enough to make it release. Once it unlocked, I could slowly lower it onto the wheelchair's footplate.

All of that was just to use the bathroom while discussing where my dad would be buried.

Why I keep drawing

I don't share stories like that very often. They aren't easy to explain, and I don't want my life or artwork to exist only as a story about MS. But experiences like that are part of why drawing gives me something I desperately need.

Art gives me a purpose outside of doom-scrolling. It keeps the phone out of my hand. I'm not a psycho, I still use it for reference photos, but it keeps me engaged in the physical world during a time when my existence seems determined to remove me from it.

When I'm drawing, I'm not thinking only about the things my body can no longer do. I'm thinking about the next line, the next color, and the next skill I'm trying to learn. I'm still building the foundation I started when I was younger, except now I'm actually trying to see where it can take me.

Maybe one day it will take me to the poster I haven't made yet.

I don't know how to reach the point where my art is good enough to be selected for a Dave Matthews Band show or tour. I don't know if it will ever happen. But given my condition, I figure I have the rest of my life to keep trying and learning.

Until then, I'll keep drawing birds, animals, and whatever else makes me want to pick up a pencil. I'll keep following the poster artists whose work inspires me. And I'll keep creating because art allows me to stay connected to a world that is becoming physically harder for me to move through.

I don't know if there is one specific point to this post. I don't share my struggles very often, but I wanted to offer a glimpse into something many people will hopefully never have to experience.

Maybe the point is simply that life took me away from drawing once, and MS pushed me back toward it.

Now I'm trying to see how far it can take me.