by Marlena Chertock
#1 on my packing list when I headed to Taiwan was a raincoat. I knew January was after monsoon season, but it’s often rainy in the capital city of Taipei. #2 was my cane. This was my first trip to Asia, and I didn’t want to let my finicky joints get in the way.
I live with a bone disorder called spondyloepiphyseal dysplasia. It causes short stature, arthritis, scoliosis, joint inflammation, chronic pain, and other issues. It’s actually a form of dwarfism; I just happen to be on the taller end of the spectrum at 4’6”.
Because of my height and without a cane, I’m not visibly disabled. I can blend in. But I’ve been using a cane for the past year to walk longer distances and help my stamina. Some days I feel like an imposter. I don’t need it, I can walk just fine. Then the temperature will drop, my hips freeze up, and every step feels like icicles jabbing my side.
First on the travel agenda is the airport. The whole airport process isn’t easy for anyone, but people with disabilities frequently face discrimination when traveling. We’re questioned about our disabilities, told we don’t look disabled enough so we shouldn’t need a wheelchair or other assistance, yelled at, have our equipment mishandled, and told to pay extra to have our basic needs met. These are things we shouldn’t have to think about or navigate when the stress of travel often makes our disabilities more painful.
Trekking through airports, standing in lines for check-in, security, immigration, boarding, de-boarding, and more increases my pain. These easy things that everyone else seems to be able to do with ease, albeit annoyance when there’s long wait times. I’m often amazed by the amount of pain my body can contain. If my body was a bottle, it would be overflowing. So now, depending on how I feel, I book wheelchair assistance to travel from check-in, through security, to the gate. I’m allowed to board flights first. All of this greatly helps.
With these obstacles trying to keep me from exploring, I managed to walk nearly 5 miles in Taiwan every day, which may not seem like a lot, but my typical work day tends to be under a mile. So I felt like I was making the most of my time there, even if others typically travel farther and keep going longer than I can.
When my pain spikes, I have to sit and rest. Sometimes I ate or sipped tea. But other times I just waited until my pain became more manageable and I could continue. One great part about traveling in Taiwan, at least in Taipei, was that there are tons of benches and parks. Even in the underground Taipei City Mall, where kids and adults play arcade games and use the vending machines lining the walls to buy Pokémon and other toys, there are benches every few steps and a nice spot to rest with wisteria vines hanging down.
I hate to end up sitting more than wandering, but that’s the nature of traveling with chronic pain and a bone disorder. That comes with the territory.
Being disabled in Taiwan was, in many ways, easier than in the U.S. The MRT (metro) has lots of elevators and bathrooms inside the stations. Main stations have wheelchair queues and priority queues in front of the MRT doors and elevators, alerting people to let those with disabilities and strollers on first. On the crowded MRT, people often offered me their seat.
Sometimes I feel like being disabled makes me rude. I can’t offer my seat on the metro or bus to the elderly or other disabled people because I need to sit. Otherwise I might get injured and have even more pain. Chronic pain has a way of shrinking your world to just yourself. In traveling, I wanted to do my best to broaden my world and think outside myself.
Throughout the MRT, there are signs showing a woman sitting on the train who may not be visibly disabled, but may need to sit anyways. I’ve never seen signage informing passengers about invisible illnesses or disabilities before. Passengers can sign up for a button to wear that lets others know they need the disability seats. This is such a wonderful, accessible, translatable concept — one we should transfer to America.
Out in the Beitou District, I soaked my aching bones for hours in hot springs. An experience I highly recommend to anyone. My fingertips swelled into prunes in the varying degrees of hot water.
In Maokong, after a gondola ride up the mountain, I ate at a lovely teahouse and had several cups of lavender oolong. Afterwards, I asked to use the restroom. It was located down several flights of stairs, so the waiter said he could get permission for me to use the store next door’s bathroom. Time and time again, the Taiwanese were very kind and accommodating. Often before I even asked for assistance.
In Shifen I navigated narrow sidewalks and inhaled the smells of street food. My friends and I decorated a lantern for good luck, and released it over train tracks. In Jiufen’s Old Street, called the Santorini of Taiwan, I somehow climbed steep neverending staircases and bought way too many Miyazaki trinkets. (View photos from my trip at instagram.com/mchertock/).
After a full day of walking and traveling, when my knees and hips are throbbing, I try to step outside myself and give myself an imaginary gold star. You climbed all those stairs, I’ll reflect. Or, remember how beautiful the lanterns were lining the streets during sunset. Distraction sometimes helps. Other times, it’s harder and I lay there telling myself how proud I am that I managed to wander as much as I did. It’s important to give yourself a hug. Your body is so incredible, as little or as far as it can travel.
Marlena Chertock has two books of poetry, Crumb-sized (Unnamed Press, 2017) and On that one-way trip to Mars (Bottlecap Press, 2016). She lives in Washington, D.C. and serves as the poetry editor of District Lit. Marlena is a graduate of the Jiménez-Porter Writers’ House and uses her skeletal dysplasia and chronic pain as a bridge to scientific poetry. Her poems and short stories have appeared or are forthcoming in Breath & Shadow, The Deaf Poets Society, The Fem, Paper Darts, Wordgathering, and more. Find her at marlenachertock.com or @mchertock.