Many people who take public transportation frequently know that we’re always in our own worlds. We don’t usually pay much attention to other people who are commuting alongside us. But, many times, when we do stop and look around—there are people who need our help.
Recently, writer Erynn Brook shared an experience she had while riding on the train home. She was approached by an 18-year-old girl and the story is so touching—we’ll let Brook tell you herself.
I’m waiting on kitty ultrasound results and trying to distract myself a little bit so I’d like to tell you a story about something that happened last night, in the hopes that I can process my feelings around it.— Erynn Brook (@ErynnBrook) April 4, 2019
I met a girl on the train last night.
Brook explains she had a lot on her mind and was on the subway when a young girl stands up across from her.
I was on my way home after work. It’s about 10pm, and the subway is pulling up to my stop. I’ve been stressed about my own stuff for days now and I’m in my little bubble and just as I stand up the girl across from me starts talking.— Erynn Brook (@ErynnBrook) April 4, 2019
She asked Brook if she was getting off the train soon—and, then handed Brook a sheet of laminated paper.
She’d been looking at me and I hadn’t really noticed. Her lips were barely moving, but I took out one earbud and said “pardon?” And she said “are you getting off soon?” And I said yes.— Erynn Brook (@ErynnBrook) April 4, 2019
The train was mostly empty. But then I noticed she was holding a laminated sheet of paper out.
The paper said on top: my seizure plan.” Brook asked if she was having a seizure at that moment, but she said she was about to—due to an indication from a monitor she had on.
At the top it said “my seizure plan”. I blinked at it then looked up at her. “Are you having a seizure now?” I asked.— Erynn Brook (@ErynnBrook) April 4, 2019
“No, but I’m about to.” She looked down at the monitor on her finger. “Can you sit with me until your stop?” She asked.
The girl told Brook that her stop was 3 stops away. Brook offered to ride with her—but the girl did not want to be a burden.
She mentioned her stop was 3 stops away. I asked if she would like me to ride with her to her stop. She said she didn’t want to bother me. I asked what she would do when I got off, she kinda shrugged and said “ask someone else. Maybe her? She looks nice. Can you ask her for me?”— Erynn Brook (@ErynnBrook) April 4, 2019
The girl started having a seizure right there on the train. She had already had her scarf ready to catch her head. Brook read her seizure plan and learned that she is only 18.
Then she seized. She had already moved her purse out of the way and folded her scarf in a place to catch her head as she slumped over. I sat next to her and read her seizure plan.— Erynn Brook (@ErynnBrook) April 4, 2019
I check my phone and start timing her seizure. I sit down. My stop comes and goes.
Brook told the girl she would stay with her until the end of the line if need be.
I tell her I’m just going to ride the subway with her to her stop, and if we miss it, don’t worry, I’ll sit with her until the end of the line if need be and we’ll just make the trip back together. She thanks me. I ask if she has her medication on her. She says she has one left.— Erynn Brook (@ErynnBrook) April 4, 2019
She reads the seizure plan that is detailed enough to plan out every moment of her seizure.
This seizure plan paper is like an anchor. It says what to do, what not to do, how long seizures might last, what medication she takes if they last too long, what steps to take if she becomes non-responsive. She comes out after 3 minutes.— Erynn Brook (@ErynnBrook) April 4, 2019
Brook was trying her best to find the right thing to do—reading the seizure plan to make sure she followed the steps.
She mentions that she needs to get a prescription refill. I say prescription refills are so annoying. She nods a bit, tells me a little bit about how the monitor on her finger works, and seizes again. I go back to reading the seizure plan. I’ve already read it but it’s an anchor.— Erynn Brook (@ErynnBrook) April 4, 2019
Brook was blown away that she gets seizures 1-4 times a day, which can last anywhere from 10-60 minutes each.
It says she gets these seizures 1-4 times a day, and each episode lasts 10-60mins.— Erynn Brook (@ErynnBrook) April 4, 2019
Just think about that for a second. Think about being randomly completely vulnerable multiple times a day, and this is just... every day.
Brook decided to get off the train with the girl, who said she just wanted to go home.
She comes out close to her stop. I ask her if she wants to get off. And she says “I’m just so tired, I want to go home.”— Erynn Brook (@ErynnBrook) April 4, 2019
The worst thing I could’ve done to this girl in this moment was call emergency services. She’s so close to home. We get off at her stop and sit for a bit.
Brook decided right then and there she would not leave this 18-year-old alone.
She places her folded scarf on the back of the chair and positions herself just so. She tells me “if it gets real bad I may have to lie down on the floor.” And seizes again. I put my stuff down and stand so I can catch her if she slips off the chair.— Erynn Brook (@ErynnBrook) April 4, 2019
I’m a big sister and a woman in the world. I’m either sitting with her until she’s completely ready to get up and walk away on her own or we’re gonna move together in shifts until she gets to her front door. There’s no way I’m leaving an 18 year old on a subway platform alone.— Erynn Brook (@ErynnBrook) April 4, 2019
She just needs to make it up the stairs. She says her condo is right outside the exit. Offer to walk her up the stairs, at least. She asks if I’m sure and says again that she doesn’t want to bother me. We go slow and chat. This is her first seizure today, but yesterday she had 2.— Erynn Brook (@ErynnBrook) April 4, 2019
Brook decided to try and get this girl back home safely.
We get to the barrier and I say. “I’d like to walk you to your building door if you’ll let me.” She protests again, but not much. I reassure her that I don’t want to come inside or anything, I’d just like to make sure she gets home safe and I’ll leave once she’s in the building.— Erynn Brook (@ErynnBrook) April 4, 2019
A few times she mentions how tired she is, and how close to home she is. Going up these stairs we keep an eye on her monitor. A train goes by and she covers her ears. Loud noises are a trigger for her. I ask if fluorescent lights are too, she nods. We make it out of the station.— Erynn Brook (@ErynnBrook) April 4, 2019
She also learned that this girl has multiple seizures a day—one happening at the gym just the day before.
She tells me that one of her seizures yesterday happened at the gym. THE GYM! I don’t even go to the gym and I have way less barriers to either getting to or being at the gym than she does. This girl is just living her life with a laminated paper as her only defense.— Erynn Brook (@ErynnBrook) April 4, 2019
I walk her to her building door and open it for her. She says “thank you for staying with me and getting me home safe.” I say “of course”, and we wave goodbye. Her scarf is draped around her shoulders now. She waved through the lobby window as she walks, slowly, to the elevator.— Erynn Brook (@ErynnBrook) April 4, 2019
After the two part ways, Brook said she couldn’t stop thinking about the scarf, and how the girl had worn it to prepare to fall and catch her head.
I have so many feelings. And they keep coming back to that scarf. That’s the image I see. How it was pre-folded before she even asked for help. How she positioned herself to fall on the scarf pillow again and again.— Erynn Brook (@ErynnBrook) April 4, 2019
She was fully prepared to go it alone. I didn’t help her, not really. My job was to make sure that no one interrupted her getting to her door. She was just trying to get home.— Erynn Brook (@ErynnBrook) April 4, 2019
Brook wanted to share the story to showcase how brave this 18-year-old is, who was ready and willing to go through the seizures again and again—alone.
It’s not a story about me being a good person. It’s not a story about how brave she is (though she clearly is), it’s a story about human needs, through the lens of disability, and how accessibility is not the same as acceptance or community care.— Erynn Brook (@ErynnBrook) April 4, 2019
We’re taught to call 911 when something looks bad and we don’t know what it is. And if I hadn’t heard her, if she didn’t have that laminated paper, maybe I would’ve done that when she started seizing.— Erynn Brook (@ErynnBrook) April 4, 2019
And this girl who’s just trying to go home because this is her daily life, would’ve been burdened with loud noises and fluorescent lights and maybe an ambulance trip further from her destination and a hospital bill and who knows what else, when she just needed to go home.— Erynn Brook (@ErynnBrook) April 4, 2019
This girl has seizures more reliably than I eat breakfast.— Erynn Brook (@ErynnBrook) April 4, 2019
And she’s just out there living her life as best she can.
I’d be lying if I said I didn’t think about all the ways she was vulnerable, in public, alone, at night, all the dangers we associate with those things.
Brook shared some insight about society and the way in which we’ve set up this girl to go through things alone.
[cn/tw: assault]— Erynn Brook (@ErynnBrook) April 4, 2019
There is no policy or program structure that addresses the high rates of assault for disabled folks. Sexual violence, violent crimes, domestic violence, are all statistically more likely to happen to people with disabilities.https://t.co/xLbCttZsf5
I’m already pre-wired to go into big sister/soccer mom mode anywhere, any time, for anyone. If I had a bus I’d just be DD and make sure everyone got home from the bar okay. But... we don’t build our world that way. We build it this way.— Erynn Brook (@ErynnBrook) April 4, 2019
We built a world where an 18 year old who gets seizures 1-4 times a day, is taking the subway home, alone, and she folds her scarf into a pillow before asking a stranger to sit with her until the next stop. Not her own stop. Not to help her home. Just enough to not inconvenience.— Erynn Brook (@ErynnBrook) April 4, 2019
We built a world where I could hit an emergency alarm button and walk off at my stop, feeling like I just saved this girl’s life, who didn’t need saving, without losing a minute of my day, if I wanted to.— Erynn Brook (@ErynnBrook) April 4, 2019
We built a world for convenience, not community.
Don’t get me wrong, emergency services are great and we should use them when we need to. That’s not the point of this thread.— Erynn Brook (@ErynnBrook) April 4, 2019
The point is that scarf. That piece of paper, and the way she said “I’ll ask someone else when you leave. Maybe her? She looks nice.”
“She looks nice.”— Erynn Brook (@ErynnBrook) April 4, 2019
It took maybe 30 minutes out of my day to make sure she got home. And she didn’t need me at all. She got there on her own.
I guess I looked nice too. But she didn’t want to ask too much. She didn’t want to ask me to stay with her an extra 3 stops.
Accommodation is the bare minimum. If I sat with her until my stop and then left, that’s what accommodation looks like.— Erynn Brook (@ErynnBrook) April 4, 2019
It’s not good enough. Not for me, not for her, not for community and not for our world.
Build something better, folks. Build a better world. 💜
Many people online thought that both Brook and the 18-year-old girl were powerful, brave, and an inspiration to everyone. Many people with epilepsy and other disorders that cause seizures told Brook how amazing it was to know that there are people in the world that will help and not just call 911 right away.
I am a paramedic, and I will never judge a call to 911 when people are scared, vulnerable, or unsure. But I recognize and am sad about how many people meet us because no other hands have caught them. What do we owe each other? This. We owe each other this. Thank-you ♥️— Liz B-B (@tweetthisasfact) April 5, 2019
Tell your Mom & Dad they did a great job raising their daughter. Construction of a better world- thx for sharing your experience ...— John Mitchell (@JohnMAlpine) April 7, 2019
She sounds pretty effing remarkable...so do you. I’ve seen a lot of seizures and seizure plans ( retired special ed teacher). You did calm, attentive support. It is really hard to think about how vulnerable and resourceful she is. Yay community.— Paula Fallon (@PollyNewton) April 5, 2019
i was diagnosed with epilepsy at the age of 14 and though i am so, so lucky that my medication controls my seizures, this made me cry. so much of my disability revolves around fear,, i can’t express how much it means that you were able to listen to her instead of calling 911— lil homunculus (@lanadelreyquaza) April 5, 2019
Thank you for paying attention to her instructions. I've walked *medical professionals* step by step through what would happen when I was about to experience a trigger, only for them to treat me for fainting, which my seizures superficially look like.— Umbra Quies (@UmbraQuies) April 5, 2019
Thank you for sharing this, and thank you for being you. I come from a culture of community care and this world is definitely in need of a lot more of it.— Michelle Shining Elk (@MShiningElk) April 6, 2019
It's hard in this divisive hate-filled Trump world, but we got to be more kind to one another.
Thank you for sharing this.
Thank you, Erynn. The hardest thing about having epilepsy is the utter lack of control and the vulnerability it forces upon you. Thanks for your compassion, and for shedding light on the subject.— Cora Carmack (@CoraCarmack) April 5, 2019