In group today, there’s a guy in his late fifties who introduces himself as Scott Rodriguez, so he must be the guy Emily was talking about at the last meeting. In the circle introductions, he mentions being out with a relapse and that his neurologist wants to try switching treatments. His disease is more progressed than mine. He’s been using a manual wheelchair regularly, and he sings praises of how helpful it’s been.
Tapping his fingers along the side of the chair, Scott says, “I used to think something like that meant you were stuck and limited.” With a shake of his head, he continues proudly, “I didn’t realize thata wheelchair meant freedom to go places and do things. I leave my house more now than I have in the last few years.”
Once we’re dismissed, when everyone is still hanging around for a while, Scott notices my eyes lingering on his wheelchair. “Are you nervous about this?” he asks.
“Sorry, I didn’t mean to stare.”
“No, I get it. I was in your shoes not too long ago. Don’t worry; not everyone ends up needing one. I fought it for such a long time, but if I could go back, I’d talk some sense into myself. This chair saves so much of my energy. I can get through the day without being completely depleted. Or tripping all over the place.” He gives a wide grin. “Plus, remember when you were a little kid, so, you know, like three years ago for you…”
I laugh, putting us both at ease.
“Don’t you remember thinking that wheelchairs looked kinda fun? Well, they can be. Do you wanna try?”
“Are you sure?” I ask apprehensively.
“Yeah, why not.”
He rolls beside a chair and, with one shaky step, carefully transfers himself to the seat. “Ay, Dios mío, it’s a miracle,” he jokes, taking a deep breath to steady himself from the exertion. “Really, though, gotta be careful who sees you get up from a wheelchair or things can get strange fast.”
I take a seat, realizing I’m supposed to grab the rims attached to the wheels rather than push the wheels themselves. Around the conference room floor, it takes a bit of energy to get going, but once I’ve got momentum, it’s fairly smooth sailing. After a spin around the room, I return to Scott. “You’re right; it’s not that bad.”
“Come on; go faster!” He puts a hand to his hip.
During a second loop, I garner enough momentum to have some wind in my hair. “That could get dangerous going down a hill.” I chuckle.
“Oof, been there, done that.” He shrugs. “But only when I’m looking for a little excitement in life and with the power-assist attachment to help me get back up the incline.”
I bring the wheelchair over to him and stand. I’ve been dreading what my future could look like if I lose functionality in my legs, but seeing how Scott feels about using the chair, I realize it wouldn’t be like I thought.
“You know how some folks here really lean into that ‘MS warrior’ language?” Scott asks as he eases himself back into the chair. “To each their own. It can be a way to reclaim your power.”
I can tell from his tone there’s a catch. “But it’s not for you?”
“Nah.” He pauses, giving me an encouraging look, then drops some more advice. “I’m not in a war. It’s a series of good days and bad days and possibly progressively worse ones. But no amount of sheer willpower will change it, right? You can do everything ‘right,’ ” he says, with air quotes, “and yet your body won’t get the memo to cooperate. So if I wake up each morning feeling like I’m fighting a losing battle, that might begin to grate on me after a while, mentally. And as hokey as it sounds, a positive attitudeiseverything.”
That all makes sense. I haven’t had long enough to think about the nuances of all this. I’m really glad I came to these meetings. “What’s worked best for you?”
Scott holds up a finger. “Keep stress at bay.” He nods and continues, “Took me too long to figure that one out. Find what makes you happy and don’t waste time on things that don’t. Because who knows what it all means in the grand scheme of things…”
“Yeah, I’ve got a lot to figure out.”
“You’ve got plenty of time, kid.”
I’ve…got time.At least, more or less the same amount of time I had before I found out that I have MS. The diagnosis might have stopped me in my tracks, but I don’t have to have it all figured out yet. If anything, there’s a fire lit under me to make sure I use my time in the best way possible.
After saying goodbye to Scott, I leave the meeting and find Ellie waiting for me in the lobby, and it’s like I see everything clearer. Being with her makes me happy.
She notices and jumps up with a spare to-go cup in her hands. “It’s hot chocolate! With oat milk if you can’t do dairy now. I tried to time it just right, but I wasn’t sure when your meeting would end, so it might be a little bit cold, but here…”
I eagerly take a sip of the lukewarm drink. “It’s still good. Thanks.”
“How’d it go?” she asks, putting back on her jacket.
“Really well. It’s like things are getting back on track, you know?” The words pour out of me like I’m willing them into being true. “Maybe I’ll even get back behind the wheel soon. Once this snow lets up in the spring, I’ll see if my cousin can take me practicing some more.”
“Oh, that’s nice.” But Ellie’s face drops. “I guess I’ll just see you at school, then.”
Crap, I didn’t mean it like that. “Maybe soon I can drive to you.”
