Dragonflies, Taylor Swift, and neon pink walking sticks
As a child, I hated P.E. For one, I was always the shortest and the slowest. While running, I would seemingly trip over my own feet, often not realizing that there had been a pebble in my path. Playing dodgeball, I’d get hit by the ball even if I wasn’t the person standing in the middle of the circle. With basketball, I luckily never had to do anything, because I quickly became known as the person you could not pass to. Even if the ball was aimed right at my waiting hands, it somehow just seemed to slip through my fingers.
With nobody passing to me, I would sometimes just sit on the bleachers. Nobody would notice. Eventually, trying to escape the fist-sized dragonflies near the bleachers led me to the girls’ bathroom during P.E. classes. Soon enough, I stopped showing up at all. Because my P.E. teachers didn’t know who I was, I even managed to secure an A from them on my report card.
When I had my first neurology appointment at the end of September 2020, I came prepared with what I thought was a full and comprehensive medical history — starting from when I fell off a horse and extending all the way to a new tingling in my fingertips I had noticed that morning. My doctor’s questions, however, went beyond that. “Did you ever have balance issues as a child?” “Did you ever notice numbness beyond the norm growing up?”
Slowly, it started to dawn on me, like flashbacks from an overly dramatic CW show. The reason I could never balance well enough to learn how to ride a bike. The reason I kept tripping on things that my feet should have been able to sense. The reason I never noticed that the ball had hit my hands and I should attempt to hold onto it. Turns out none of that was me being lazy — except for drinking juice boxes in the bathroom during P.E., that definitely was.
My doctor then explained that it was crucial that I start exercising more, because numb nerves need stimulation or they’ll get worse. Walks, he explained, were a good place to start, but I must make sure not to fall. Because telling a person not to fall prevents falling. I told him that every time I tried to walk, my foot would hit an uneven cobblestone and my numb ankle would twist without me realizing it. How was I supposed to go on walks without doing further damage?
Apparently, hiking poles were the answer. They would allow my brain to process information about the ground below through both my diminished-sensation feet and my diminished-sensation hands. Hopefully, the two halves would make a whole, and my brain could gain a good enough picture of what the ground felt like. And if all else failed and I tripped anyway, the sticks could catch me.
It seemed simple enough in the moment, but it was only when the neon pink sticks arrived in the mail that I realized that they were going to give visibility to my invisible disability — visibility that I didn’t want and wasn’t ready for. Maybe people would think I needed hiking poles because I was going on a hike. But if I’m just walking to the grocery store? Nobody’s going to think that’s a hike. There was a slightly more logical part of me that knew many people wouldn’t care. But I also knew that the subset of people that did would bother me.
So I brought friends along with me on my first few walks, thinking that maybe I could just walk behind them and nobody would see the sticks. It worked at first. My friend and I scheduled a weekly walk, and we’d go to a nearby garden or grab coffee, and while we were talking, I forgot to pay attention to how passersby were reacting to my walking sticks.
Eventually, though, I realized that I had to walk more frequently than once a week if I was going to get any better, and I couldn’t get a friend to tag along every time. So I set out alone. Some people pleasantly surprised me. A few friends I hadn’t seen in a while because of COVID passed me on the street and had wonderfully normal conversations with me. They didn’t even look at the sticks or ask about them.
Some, though, behaved exactly how I feared they would. Once, I ran into my friend’s dad and we exchanged pleasantries. I noticed that he wouldn’t take his eyes off my sticks. I wish he had asked about them. At least that way I would have been able to raise some tiny bit of awareness about peripheral neuropathy.
When I moved to Northern Virginia in July, one of my first walks was marred by a stranger in the street looking at me and doing some sort of weird monkey dance, imitating my hands moving back and forth with the sticks as I walked. He was saying something, too, but I’ll have to thank my headphones and Taylor Swift’s re-recording of Fearless for not letting me hear that.
So I grew wary and increasingly tense. I kept my headphones on and my eyes on the ground. If someone made eye contact with me on the street, I crossed to the other side, even if the eye contact was friendly.
One afternoon, though, a little old lady with her own walking sticks stopped me outside the grocery store. Pointing at my sticks, she asked, “Where did you get those from? Mine are such a boring color, I want bright pink ones like you have too!” And I launched into an explanation of how they fold up to half their size, have removable tips and inserts for snow, and how they come in five other colors. When I told her I got them off Amazon, she didn’t understand what that meant, so I showed her how to go to the website and search the company I had bought mine from. I hope she’s out there somewhere, with new walking sticks that are bright pink.
After that, some of my fear went away. Eye contact I made with people on the street was more defiant, and in my head I was saying, “Yes, I have walking sticks. Yes, I’m only 24. What about it?” Slowly, I started having more and more conversations like the one I’d had with the lady outside the grocery store. More and more strangers would see my sticks and realize theirs were boring. An elderly man even came up to me at a restaurant, saying that his grandson had convinced him to ask me where I got my walking sticks instead of wondering to himself.
With time, I started to notice that I was getting faster. With the sticks, I felt more balanced than I ever had. I started using them creatively, to jump over puddles and to take the stairs two at a time. And before I knew it, Taylor Swift had re-recorded Red, too, and I was passing by people so fast while listening to it that I didn’t even have the chance to wonder what they were thinking of me.
The lazy girl whose P.E. teachers didn’t know her name started to slowly fade away. Regardless of how cold it was, I went on my afternoon walk. Even with 10 inches of snow a few weeks ago, I walked. Last Monday, after a really stressful weekend, I noticed a smile that started to spread across my face as soon as my feet hit the ground outside my apartment building. As I continued along my path, it turned into a broad grin as I felt my stress start to ebb. (Very glad I was wearing a mask for that.)
Walking has turned from something my doctor said I had to do into something I enjoy doing. Sometimes, it’s the best part of my day. Recently, I went to California for a short vacation, and while my cousins were at school, I walked to a park close to their house. It had a lake, a creek, and redwoods, and I was so excited to walk to them all. I only managed two out of three, but that wasn’t because of the neuropathy. It was because I was faced, once again, with fist-sized dragonflies on the way to the creek. But two out of three isn’t bad at all for someone who, only two years ago, would have stayed in bed the entire time watching Netflix.
A few months ago, I met up with a friend in New York whom I hadn’t seen in person since my diagnosis. I had walked 80 blocks toward her apartment and was somehow still standing. As she walked toward me, utter shock was written all over her face, which caused apprehension to start to creep into mine.
“Diva, I have literally never seen you move this fast. It’s like the sticks were what you were missing this entire time.”
I liked that. I like thinking about it this way. Growing up, there was something I was missing. And now that I’ve found it, in the form of neon pink walking sticks, I’m whole again.
