spinal muscular atrophy writer

Lisa B.

Adult with SMA

Navigating the train

I grew up in Brooklyn. My first job was in an office in Manhattan. The trip to the train station meant that I had to walk one block and one long avenue to get to the train, then I had the arduous task of climbing 3 flights of stairs to get to the elevated platform.

01/2019

The thunderous sound of the trains overhead set off my anxiety as I walked toward the Ditmas Avenue station. People rushed by me, some running toward the stairs in hopes of getting to the top before the train doors chimed “ding dong” and closed in their faces. I tried to leave early because rushing wasn’t an option. When my muscles were achy from the walk or stiff from the cold winter air, I walked even slower. I carried a sense of anguish as I approached the staircase. It was my Mount Everest, and I needed to conquer it daily.

Once I arrived at the mountain of steps, I’d hold on to the handrail and rest before ascending. The steps were concrete with metal tips and were speckled with black spots of discarded gum. The dirty tallow banister was my lifeline as I clutched onto it and pulled myself up each step, one by one. I had to be careful where I held on because it was another popular place for used gum. I rested in intervals, trying not to draw attention to myself. I looked out toward the street at the people hastily walking toward the station, pretending that I was looking for someone. I evaded eye contact so that no one would ask me what was wrong. If someone did ask if I was alright, I forced out a smile and a nod because there was nothing they could do to help me. I preferred they run ahead of me and get on the train without noticing me.

Although I wished to be unseen, the reverse would occur. Sometimes passengers would find me sluggishly climbing or resting, which made it impossible for them to pass me if other commuters were filing down the other side of the staircase. I would stand up against the railing to try and make room for them to squeeze by. Occasionally, the sucking of teeth and snide remarks demonstrated their annoyance as I obstructed their path. New Yorkers are always in a rush and probably couldn’t imagine why I was standing there or moving so slowly when there was a train to catch. Once I managed to get up to the last few steps of the final flight, I could rest before the train came. Occasionally, I’d make it up just before the train pulled out, prompting a thoughtful person to hold the door for me while passengers looked on, waiting for me to rush in so the doors could close and they could be on their way. By then, I was too exhausted to hurry and would wave them on and say, “No thank you. You can let it go.” I was too late for that train but early for the next.

As I stood behind the thick yellow line that was painted on the edge of the platform, I’d look down the tracks to see if I could get a glimpse of the next train. With the worse part of my day behind me, I enjoyed a sense of accomplishment. As I waited for the train, I could see a new set of commuters just coming up the stairs. They didn’t see how I had struggled to get up there. I felt normal in their eyes. They were the ones that I didn’t have to be invisible to.

If I didn’t get a seat on the train, I held on to the pole tightly because the fast moving train would jerk me around and threaten to knock me to the floor. If I did get a seat, anxiety would set in as I neared the end of my journey. I would stand up one stop before reaching my destination to ensure I had enough time to get up out of the low seat and make my way to the doors before they closed. Sometimes, as I followed the moving crowd, I’d find myself in front of an out-of-service escalator. The steps were so steep that I had to turn away and find a staircase to climb. Once I made it to the street, I found it difficult to keep up with the fast-moving crowds. Like a scene in a movie, I was walking in slow motion while a mob of commuters rushed past me. I walked close to the buildings where less people passed. I would pretend to be window shopping as an excuse to rest. In the winter, I’d take a different route so that I could travel underground to avoid the harsh weather. I was always fearful of fast-moving travelers who weren’t aware that a quick brush from a shoulder or a heavy bag would be enough to knock me down.

Once I arrived at work, I was as normal as anyone else and no one knew the hardship I had endured to get there. Going home was easier because gravity made going down the stairs less difficult. As long as I held on to the banister and watched my step, I could descend quickly. Although the stairs were a thorn in my side, I never thought of quitting. I accepted the struggling as part of my life.

A few years later, I visited a friend in Washington, DC. I was amazed at how accessible the subway station was there. They had elevators and escalators at every stop. I always hoped that maybe NYC would update their subway system to a totally accessible one.

It’s been 31 years since I’ve rode on a train. I became untethered when I got my driver’s license. I still hope that the traveling needs of people with disabilities will one day be considered. Out of 472 subway stations in NY, approximately 117 are accessible, leaving 355 inaccessible to people with disabilities such as SMA.

Other posts by Lisa

Finding work-life balance

For the first 20 years of my life, I was oblivious to what SMA was. At a young age, I realized that I was different and wondered why my body failed me. I was in college earning an Associate’s degree with plans to go on to obtain my Bachelor’s when I got my diagnosis.

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