Erynn Brook met a girl last night
April 5, 2019 10:47 AM Subscribe
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. The train was mostly empty. But then I noticed she was holding a laminated sheet of paper out.
At the top it said “my seizure plan”
Erynn Brook previously
At the top it said “my seizure plan”
Erynn Brook previously
"Accommodation is the bare minimum."
posted by ITheCosmos at 11:08 AM on April 5, 2019 [28 favorites]
posted by ITheCosmos at 11:08 AM on April 5, 2019 [28 favorites]
I am crying now. Beautiful writing.
posted by medusa at 11:15 AM on April 5, 2019 [5 favorites]
posted by medusa at 11:15 AM on April 5, 2019 [5 favorites]
God damn.
posted by penduluum at 11:16 AM on April 5, 2019 [2 favorites]
posted by penduluum at 11:16 AM on April 5, 2019 [2 favorites]
That was an enriching read on a number of levels. Thanks for pointing me at it.
posted by davelog at 11:20 AM on April 5, 2019 [1 favorite]
posted by davelog at 11:20 AM on April 5, 2019 [1 favorite]
That girl on my train, that will be my niece, if she makes it out of her mother's house at age 18. I live the on the other side of the country from her, so all I can do is hope that a fraction of the people she passes in a day be as humane as the woman who wrote the essay.
These are enriching reads and I hope they get wider, receptive audiences.
posted by crush at 11:24 AM on April 5, 2019 [9 favorites]
These are enriching reads and I hope they get wider, receptive audiences.
posted by crush at 11:24 AM on April 5, 2019 [9 favorites]
Dusty in here.
posted by evilDoug at 11:26 AM on April 5, 2019 [4 favorites]
posted by evilDoug at 11:26 AM on April 5, 2019 [4 favorites]
Ah man, those moments of connection this takes, learning to read who isn't so buried under layers of mental armor that they might help you, might answer a question or watch out for you, might know the stop you need to get to and might catch your eye to make sure you know when you get there, might make sure you know where you're going at least, or watch out for you while you have a seizure and walk you home at most. I'm from the Midwest, and I think I must still have a look of openness about me, because I still get asked for help by people who must think I seem nice. Increasingly I think this is a feature, not a bug of my personality.
It's rough out there, though, and you can always see people living on the edge. I was on the train coming home late at night a few days ago and a homeless guy woke up, knocking over his can of iced tea in doing so, and asked me what station we'd passed. I told him, and it turned out he'd just missed his stop. It was me and him, almost alone on a train car, and he yelled in frustration and threw his can on the way out at the next stop. I'm good in a crisis, but getting his raw emotions and the physical aspect of that was a bit terrifying, and people face stuff like that every day too. So of course people learn to shut everyone else out, because just being human to each other can feel dangerous.
I hope people can keep their hearts and minds open at least this much, though. It's what I'd want anyone to do for me, as they did when I yelled for help when I broke my ankle last year.
posted by limeonaire at 11:41 AM on April 5, 2019 [31 favorites]
It's rough out there, though, and you can always see people living on the edge. I was on the train coming home late at night a few days ago and a homeless guy woke up, knocking over his can of iced tea in doing so, and asked me what station we'd passed. I told him, and it turned out he'd just missed his stop. It was me and him, almost alone on a train car, and he yelled in frustration and threw his can on the way out at the next stop. I'm good in a crisis, but getting his raw emotions and the physical aspect of that was a bit terrifying, and people face stuff like that every day too. So of course people learn to shut everyone else out, because just being human to each other can feel dangerous.
I hope people can keep their hearts and minds open at least this much, though. It's what I'd want anyone to do for me, as they did when I yelled for help when I broke my ankle last year.
posted by limeonaire at 11:41 AM on April 5, 2019 [31 favorites]
Wow. I have been temporarily inconvenienced by a hip replacement and before that the pain that I was experiencing because of needing the hip replacement so I've been using a cane for a little over a year. People have generally been nice and accommodating (holding doors, reaching things on high or low shelves at the store, etc.) But, wow. That is a lot to think about.
posted by agatha_magatha at 11:53 AM on April 5, 2019 [2 favorites]
posted by agatha_magatha at 11:53 AM on April 5, 2019 [2 favorites]
So of course people learn to shut everyone else out, because just being human to each other can feel dangerous.
It's not even that it feels dangerous, or potentially dangerous - for me, at least, it's just that living in NYC I see thousands and thousands of strangers every day, and I must tamp down the part of my brain that wants to have human-to-human interactions with strangers or I would literally lose my mind. It's not fear or rudeness, it's just self-protection from total empathy overload.
But after living here for a long time, I did come to realize that this protective invisible barrier had a lot of downsides too. I had overcompensated - it was making me totally ignore my surroundings even when I didn't need to. So now, when I'm in a situation where the chance to have a tiny interaction with a stranger comes up organically - their dog sniffs my shoe, they trip when the train lurches, they ask me for a cigarette light, they're obviously-lost tourists - I jump at the chance to smile and be pleasant and helpful.
A friend recently noticed me doing this and said it must be the Southerner in me, but it really isn't. I didn't do this stuff nearly as much when I lived in the south. It's a way of balancing the necessary filtering-out of the people around me that comes with living in a big dense city.
posted by showbiz_liz at 11:57 AM on April 5, 2019 [53 favorites]
It's not even that it feels dangerous, or potentially dangerous - for me, at least, it's just that living in NYC I see thousands and thousands of strangers every day, and I must tamp down the part of my brain that wants to have human-to-human interactions with strangers or I would literally lose my mind. It's not fear or rudeness, it's just self-protection from total empathy overload.
But after living here for a long time, I did come to realize that this protective invisible barrier had a lot of downsides too. I had overcompensated - it was making me totally ignore my surroundings even when I didn't need to. So now, when I'm in a situation where the chance to have a tiny interaction with a stranger comes up organically - their dog sniffs my shoe, they trip when the train lurches, they ask me for a cigarette light, they're obviously-lost tourists - I jump at the chance to smile and be pleasant and helpful.
A friend recently noticed me doing this and said it must be the Southerner in me, but it really isn't. I didn't do this stuff nearly as much when I lived in the south. It's a way of balancing the necessary filtering-out of the people around me that comes with living in a big dense city.
posted by showbiz_liz at 11:57 AM on April 5, 2019 [53 favorites]
Some of the Twitter reactions were surprisingly negative. I kinda get the sense people may be potentially underestimating the number of people whose daily life this could describe. I'd bet the number of people having seizures on the train in NYC is probably... I'd bet more than dozens per day, probably not thousands, but a lot. (When you consider that NYC is probably one of the only cities in the US where you're not abnormal if you can't/don't drive.)
I had a friend living with me while she got her seizure meds straightened out. That shit is borderline alchemy. I'm not convinced that anyone has a really firm idea why most of them even work. And what works fine for one person can be horrific for another person, but you don't know until you roll the dice—here, try this for a month and we'll see how it goes—and then when you get everything dialed in right, you can still be utterly fucked when you change jobs and suddenly the drug that was covered now isn't, or the insurance company decides to switch to a new mail-order pharmacy and starts sending you weird generic drugs from some lab in India that do crazy shit, even though on the label they claim they're "equivalent" (well, "bioequivalent", which might as well mean "good luck!").
Doctors, in my experience, will push people surprisingly hard to stay on meds despite crippling side effects; a neuro pushed my friend to stay on one drug, despite it turning her from one of the most brilliant people I know, to someone who couldn't sort the goddamn forks and spoons into the right slots in the silverware drawer. He didn't seem to see how this could be a worse outcome than the occasional seizure, or even that it might not be totally compatible with holding down a job as a postdoc researcher. She wasn't having seizures, so roll out the Mission Accomplished banner.
We joked about her getting a "whatever you do, please DO NOT call 911" tattoo. Because yeah, those not-especially-useful trips to the hospital tend to add up quick. Not to mention taking a big chunk out of your day.
Ironically, bars are a pretty good place to have an absent seizure. Nobody calls 911 immediately if they see someone passed out quietly in the back corner of the bar. If they do anything at all, they'll probably say something to the bartender. So, you just explain the situation to the bartenders and if they're cool, they'll make sure nobody messes with you. You can tip well for this service, and still end up way ahead compared to ER copays. I used to joke that if they could figure a way to bill insurance for it, they'd make a fortune. And they're already in the applied psychopharmacology business anyway.
Anyway, yeah, welcome to America. This is just how we roll in 2019.
posted by Kadin2048 at 11:58 AM on April 5, 2019 [82 favorites]
I had a friend living with me while she got her seizure meds straightened out. That shit is borderline alchemy. I'm not convinced that anyone has a really firm idea why most of them even work. And what works fine for one person can be horrific for another person, but you don't know until you roll the dice—here, try this for a month and we'll see how it goes—and then when you get everything dialed in right, you can still be utterly fucked when you change jobs and suddenly the drug that was covered now isn't, or the insurance company decides to switch to a new mail-order pharmacy and starts sending you weird generic drugs from some lab in India that do crazy shit, even though on the label they claim they're "equivalent" (well, "bioequivalent", which might as well mean "good luck!").
Doctors, in my experience, will push people surprisingly hard to stay on meds despite crippling side effects; a neuro pushed my friend to stay on one drug, despite it turning her from one of the most brilliant people I know, to someone who couldn't sort the goddamn forks and spoons into the right slots in the silverware drawer. He didn't seem to see how this could be a worse outcome than the occasional seizure, or even that it might not be totally compatible with holding down a job as a postdoc researcher. She wasn't having seizures, so roll out the Mission Accomplished banner.
We joked about her getting a "whatever you do, please DO NOT call 911" tattoo. Because yeah, those not-especially-useful trips to the hospital tend to add up quick. Not to mention taking a big chunk out of your day.
Ironically, bars are a pretty good place to have an absent seizure. Nobody calls 911 immediately if they see someone passed out quietly in the back corner of the bar. If they do anything at all, they'll probably say something to the bartender. So, you just explain the situation to the bartenders and if they're cool, they'll make sure nobody messes with you. You can tip well for this service, and still end up way ahead compared to ER copays. I used to joke that if they could figure a way to bill insurance for it, they'd make a fortune. And they're already in the applied psychopharmacology business anyway.
Anyway, yeah, welcome to America. This is just how we roll in 2019.
posted by Kadin2048 at 11:58 AM on April 5, 2019 [82 favorites]
I want to know more. I bet there's a greater than zero chance that this woman has, or will have, difficulty affording her medication. At 18 she may still be on her parent's insurance or a student policy, assuming she has access to either. There's also a greater than zero chance that there are other medications (or surgery) available to her that could do a better job of controlling her seizures. I don't know for certainty, but often that's the punchline to these sorts of stories. At a minimum, I want her to get a service dog.
posted by cjorgensen at 12:00 PM on April 5, 2019 [7 favorites]
posted by cjorgensen at 12:00 PM on April 5, 2019 [7 favorites]
I also have a face that says "I'll help you" to many people, and I also think it is a gift. I met a woman on the bus who had taken her children out to dinner to get out of the house they were staying in - they were homeless, staying with a relative, and feared they were getting on the relative's nerves so they got out of the house. The woman cried on my shoulder telling me their ordeal. Then her kids read parts of my book aloud to me and guessed the endings of the short stories. They told me about their old house and their favorite pets. They have lots of dog names in mind for when they get a dog again. I ended up keeping track of the older ones while she dealt with a problem the youngest had. A lovely family. I think of them often. I hope they can get a dog and give it 27 names.
I have watched people's kids, dogs, laptops, bikes, drinks. I have made conversation with a stranger's kid to keep them entertained many times. I have given directions to absolutely everywhere - even once while I was biking to a person driving a car.
There is a joke on Seinfeld where George yells "We're living in a society!" avoid being helpful to him and that pretty well sums up my attitude sometimes. Like the time I got a terrible nosebleed at the grocery store and was trying to ask someone to give me a towel, and no one would make eye contact with me.
posted by Emmy Rae at 12:07 PM on April 5, 2019 [34 favorites]
I have watched people's kids, dogs, laptops, bikes, drinks. I have made conversation with a stranger's kid to keep them entertained many times. I have given directions to absolutely everywhere - even once while I was biking to a person driving a car.
There is a joke on Seinfeld where George yells "We're living in a society!" avoid being helpful to him and that pretty well sums up my attitude sometimes. Like the time I got a terrible nosebleed at the grocery store and was trying to ask someone to give me a towel, and no one would make eye contact with me.
posted by Emmy Rae at 12:07 PM on April 5, 2019 [34 favorites]
I'm not saying it's a common occurrence, or that I'm going to stop helping people in distress, but I am going to be a little more cautious when helping people, after what happened the last time someone seized on my bus home.
He seized and started to fall, and got tangled up in his scarf. The people sitting near him supported him and stopped him from falling, and got the scarf loose. He came out of the seizure disoriented, grabbed the woman who had moved the scarf by her throat, and started choking her. We pulled them apart, the cops and ambulance had to come, in short, the whole thing was a mess.
posted by zamboni at 12:14 PM on April 5, 2019 [2 favorites]
He seized and started to fall, and got tangled up in his scarf. The people sitting near him supported him and stopped him from falling, and got the scarf loose. He came out of the seizure disoriented, grabbed the woman who had moved the scarf by her throat, and started choking her. We pulled them apart, the cops and ambulance had to come, in short, the whole thing was a mess.
posted by zamboni at 12:14 PM on April 5, 2019 [2 favorites]
Kadin2048 - As someone who has absence seizures but doesn't drink.... the article rung a particularly resonate note for me. Being a single dude on a train waaaay past my stop and not in a position to self advocate got harassed by transit police twice in a month. Because, postictal, I still looked drunk.
I feel this young woman so hard I want to cry. Most days all I want to do is get home.... and hope I have food because the local grocer doesn't have a self checkout line, my french is terrible and by the end of the day it's hit-or-miss if I'll still have workable verbal english at my disposal. At some point most people just want to get home safe at then end of the day but it's often overlooked just how often that is more difficult than it would first appear.
This post making the front page as this one has made my week. I wish I was better at surfacing this kind of material.
posted by mce at 12:17 PM on April 5, 2019 [24 favorites]
I feel this young woman so hard I want to cry. Most days all I want to do is get home.... and hope I have food because the local grocer doesn't have a self checkout line, my french is terrible and by the end of the day it's hit-or-miss if I'll still have workable verbal english at my disposal. At some point most people just want to get home safe at then end of the day but it's often overlooked just how often that is more difficult than it would first appear.
This post making the front page as this one has made my week. I wish I was better at surfacing this kind of material.
posted by mce at 12:17 PM on April 5, 2019 [24 favorites]
Emmy Rae: Like the time I got a terrible nosebleed at the grocery store and was trying to ask someone to give me a towel, and no one would make eye contact with me.
Sometimes the easiest way to be left alone is to look like you're in need of help, or are "down on your luck." In college, I was a scruffy dude with a scruffy goat-beard (goatees are well trimmed and maintained -- mine was not). I wore a big, ugly jacket on a class trip and wandered off from the group to sketch something, and people seemed to be avoiding me. I looked at my reflection in a store window and laughed to myself -- yeah, I've avoided people who looked like me right then. Sometimes, I still have to remind myself to make eye contact with people who make me uncomfortable, because they're people who are dealing with something, and they deserve that respect, even if I can't support them.
posted by filthy light thief at 12:17 PM on April 5, 2019 [6 favorites]
Sometimes the easiest way to be left alone is to look like you're in need of help, or are "down on your luck." In college, I was a scruffy dude with a scruffy goat-beard (goatees are well trimmed and maintained -- mine was not). I wore a big, ugly jacket on a class trip and wandered off from the group to sketch something, and people seemed to be avoiding me. I looked at my reflection in a store window and laughed to myself -- yeah, I've avoided people who looked like me right then. Sometimes, I still have to remind myself to make eye contact with people who make me uncomfortable, because they're people who are dealing with something, and they deserve that respect, even if I can't support them.
posted by filthy light thief at 12:17 PM on April 5, 2019 [6 favorites]
@cjorgensen
Erynn Brook's about page says she lives in Toronto, so if this took place there then the girl would have OHIP (Ontario health insurance) which includes prescription drugs for anyone under 25 not already covered on their parents' drug plan. So at least there's that.
posted by troutontitan at 12:18 PM on April 5, 2019 [8 favorites]
Erynn Brook's about page says she lives in Toronto, so if this took place there then the girl would have OHIP (Ontario health insurance) which includes prescription drugs for anyone under 25 not already covered on their parents' drug plan. So at least there's that.
posted by troutontitan at 12:18 PM on April 5, 2019 [8 favorites]
My 1 year old son has a severe, intractable epilepsy syndrome that will be lifelong. We have the laminated seizure plan too. We carry it with us. Once he was diagnosed last fall, following genetic testing, seizures went from "panic and call 911 because we don't know what's happening" to an unfortunate routine part of our lives; at this point if a seizure goes on so long that we have to call the ambulance for extra help, our local paramedics just wait patiently for us to to tell them what to do and if there's a new guy on the crew we'll hear the experienced ones quietly telling them "just let them handle it, they know what they're doing." It's a very strange world to live in.
So we carry his seizure plan with us in the diaper bag, and some day in a handbag or backpack, and if the other effects of his seizure disorder (or the cocktails of maybe-helpful sedating drugs that become common as the seizures become more and more resistant to medication) don't take his cognition from him, then eventually it'll be up to him to carry it with him and hand it to strangers who "seem nice".
Anyway I read this last night and felt this complex array of emotions, from icy terror at the thought of my son some day navigating life with nothing but a laminated piece of paper and faith in humanity, to empathy for that 18 year old girl living her life despite her setbacks and hope that my son will actually be able to do that some day, to a visceral gratitude for the woman tweeting who did what she was asked and followed the girl's plan rather than trying to know better. Would a man have followed the girl's lead equally well, or have "known better" and ruined the girl's night (or even finances) by calling an ambulance? If the girl weren't white, would a white bystander trust her enough not to level up on the intervention? I've had only the slimmest beginnings of real insight into the world of disabled people and the degree to which disabled folks are trusted to know their own needs varies so vastly with their relative privilege in a situation and... holy shit. Holy shit. Determining who "seems nice" in those situations is fraught with all kinds of baggage. I imagine this girl has to go through this mental exercise every time she walks into a store or a train car or classroom or whatever - who here looks nice? Who can I ask for help when I start to have an aura? What a mental load to carry on top of everything else.
Anyway, I have all the feelings about this thread, and as the mother of a kid with epilepsy I just wanted to emphasize that if you read this and have any kind of reaction at all where you think "well yeah but if I were in this situation maybe I would "know better" and call an amublance" please, please don't. Follow the seizure plan. It will say when it's time to call for more help. If things don't reach that point, then just don't. It can cause more harm than good. (literally. An uninformed paramedic or ER tech giving my son the wrong rescue medication -- ones that are common but are contraindicated for his very specific type of epilepsy -- could send him into a multi-day seizure state that is life-threatening)
posted by olinerd at 12:18 PM on April 5, 2019 [90 favorites]
So we carry his seizure plan with us in the diaper bag, and some day in a handbag or backpack, and if the other effects of his seizure disorder (or the cocktails of maybe-helpful sedating drugs that become common as the seizures become more and more resistant to medication) don't take his cognition from him, then eventually it'll be up to him to carry it with him and hand it to strangers who "seem nice".
Anyway I read this last night and felt this complex array of emotions, from icy terror at the thought of my son some day navigating life with nothing but a laminated piece of paper and faith in humanity, to empathy for that 18 year old girl living her life despite her setbacks and hope that my son will actually be able to do that some day, to a visceral gratitude for the woman tweeting who did what she was asked and followed the girl's plan rather than trying to know better. Would a man have followed the girl's lead equally well, or have "known better" and ruined the girl's night (or even finances) by calling an ambulance? If the girl weren't white, would a white bystander trust her enough not to level up on the intervention? I've had only the slimmest beginnings of real insight into the world of disabled people and the degree to which disabled folks are trusted to know their own needs varies so vastly with their relative privilege in a situation and... holy shit. Holy shit. Determining who "seems nice" in those situations is fraught with all kinds of baggage. I imagine this girl has to go through this mental exercise every time she walks into a store or a train car or classroom or whatever - who here looks nice? Who can I ask for help when I start to have an aura? What a mental load to carry on top of everything else.
Anyway, I have all the feelings about this thread, and as the mother of a kid with epilepsy I just wanted to emphasize that if you read this and have any kind of reaction at all where you think "well yeah but if I were in this situation maybe I would "know better" and call an amublance" please, please don't. Follow the seizure plan. It will say when it's time to call for more help. If things don't reach that point, then just don't. It can cause more harm than good. (literally. An uninformed paramedic or ER tech giving my son the wrong rescue medication -- ones that are common but are contraindicated for his very specific type of epilepsy -- could send him into a multi-day seizure state that is life-threatening)
posted by olinerd at 12:18 PM on April 5, 2019 [90 favorites]
I swear to Christ, it's really weird, but most of the time I get offers of help with my wheelchair I'm like, chugging along. One woman said to me, "I tried to catch up to you to push you but you were going too fast."
But then there are the incidents I can remember with SEPTA where I've fallen and the SEPTA operators are looking at me and eyeing each other because it's like *well there's a lady writhing on the ground that's some fucked-up shit with much we must deal*
It's just really really weird, I swear to God, when I actually do need help? That freaks people out. When I'm like speeding like some weird wheeled superhero that's when I get all the MISS DO YOU NEED HELP.
Anyway, the writer was awesome (hope her cat's okay) and young woman she helped, well, that woman is by definition a warrior
posted by angrycat at 12:24 PM on April 5, 2019 [65 favorites]
But then there are the incidents I can remember with SEPTA where I've fallen and the SEPTA operators are looking at me and eyeing each other because it's like *well there's a lady writhing on the ground that's some fucked-up shit with much we must deal*
It's just really really weird, I swear to God, when I actually do need help? That freaks people out. When I'm like speeding like some weird wheeled superhero that's when I get all the MISS DO YOU NEED HELP.
Anyway, the writer was awesome (hope her cat's okay) and young woman she helped, well, that woman is by definition a warrior
posted by angrycat at 12:24 PM on April 5, 2019 [65 favorites]
I’m a big sister and a woman in the world.
Oh, man. That line is the one that got me: we are all big sisters and little brothers and in between, to every and each of the rest of us.
I get asked for directions a lot, probably because I look vaguely harmless. (I usually need to look it up, and often give directions that only gets them partway. This even happened a lot when I used to travel abroad.) Who says no to someone when the aid is clear, direct, and simple?
The Reddit story referred to as "Today you, tomorrow me" is an example of how, when we open ourselves to be aided -- to be vulnerable -- we can become better and stronger and more whole people.
I kind of hate that the young woman even has a card that has to be carried and a need to be helped...but I am also very glad that she feels strong and brave and prepared enough to go out with just that card and get her shit done.
posted by wenestvedt at 12:29 PM on April 5, 2019 [11 favorites]
Oh, man. That line is the one that got me: we are all big sisters and little brothers and in between, to every and each of the rest of us.
I get asked for directions a lot, probably because I look vaguely harmless. (I usually need to look it up, and often give directions that only gets them partway. This even happened a lot when I used to travel abroad.) Who says no to someone when the aid is clear, direct, and simple?
The Reddit story referred to as "Today you, tomorrow me" is an example of how, when we open ourselves to be aided -- to be vulnerable -- we can become better and stronger and more whole people.
I kind of hate that the young woman even has a card that has to be carried and a need to be helped...but I am also very glad that she feels strong and brave and prepared enough to go out with just that card and get her shit done.
posted by wenestvedt at 12:29 PM on April 5, 2019 [11 favorites]
Like the time I got a terrible nosebleed at the grocery store and was trying to ask someone to give me a towel, and no one would make eye contact with me.
Oh right, that reminds me of the woman at the train station on the other end of my journey earlier in the week, who had just fallen and cut open her thumb and was trying unsuccessfully to get the bleeding to stop in the bathroom. I ended up getting her a whole roll of toilet paper to wrap around it, then continued on to my destination. Maybe it's the codependent in me, but it just seems so basic to me to try to help someone in that situation. It might not always work out, but I err on the side of being human.
posted by limeonaire at 12:30 PM on April 5, 2019 [9 favorites]
Oh right, that reminds me of the woman at the train station on the other end of my journey earlier in the week, who had just fallen and cut open her thumb and was trying unsuccessfully to get the bleeding to stop in the bathroom. I ended up getting her a whole roll of toilet paper to wrap around it, then continued on to my destination. Maybe it's the codependent in me, but it just seems so basic to me to try to help someone in that situation. It might not always work out, but I err on the side of being human.
posted by limeonaire at 12:30 PM on April 5, 2019 [9 favorites]
Incredible story
posted by greenhornet at 1:09 PM on April 5, 2019
posted by greenhornet at 1:09 PM on April 5, 2019
CJ: If she is formally considered disabled by the Federal Government, she automatically receives Medicare, regardless of her age.
posted by Brocktoon at 1:22 PM on April 5, 2019
posted by Brocktoon at 1:22 PM on April 5, 2019
Erynn Brook's about page says she lives in Toronto
Oh, wow I missed that. I thought for sure she was in NYC for some reason. Doesn't really change that much, though. (Though I guess it might make it more likely that the young woman has access to healthcare and has already mix-maxed the seizure risk vs. drug-side-effect equation, as opposed to just not being able to access it at all.)
mce: Yeah the irony of my friend hanging out in bars was that, at least for much of the time because of her meds, she didn't drink. She was basically just using it like a Starbucks, but where nobody cared too much if she occasionally passed out or acted like she was half in the bag (she also came across 'drunk' for the first few minutes postictal). It helped that she wasn't combative, though. (Also, bar wifi at 3PM >> coffee shop WiFi.)
I feel bad for people who get combative when they're postictal. I've had a couple of folks take a swing at me when I've been in the back of an ambulance, and to a one, they've always been super apologetic afterwards. One guy told me he accidentally slugged his mom once.
Someone advised me, years ago when I was training to be an EMT, to always try and back up a bit when you notice someone is coming around from a seizure, just so they don't wake up with a bunch of people waaaaay up in their space. (Puts your face a bit out of reflex insta-punch range, too.) Always seemed like good general politeness to me.
when we open ourselves to be aided -- to be vulnerable -- we can become better and stronger and more whole people.
Something that I try to keep in the back of my mind is that in a town of 30,000 people, on any given day, somebody is having the single worst day of their life. If you happen to run into that person, the least you can do is not make it worse, and maybe try to make it slightly better if you can.
posted by Kadin2048 at 1:23 PM on April 5, 2019 [36 favorites]
Oh, wow I missed that. I thought for sure she was in NYC for some reason. Doesn't really change that much, though. (Though I guess it might make it more likely that the young woman has access to healthcare and has already mix-maxed the seizure risk vs. drug-side-effect equation, as opposed to just not being able to access it at all.)
mce: Yeah the irony of my friend hanging out in bars was that, at least for much of the time because of her meds, she didn't drink. She was basically just using it like a Starbucks, but where nobody cared too much if she occasionally passed out or acted like she was half in the bag (she also came across 'drunk' for the first few minutes postictal). It helped that she wasn't combative, though. (Also, bar wifi at 3PM >> coffee shop WiFi.)
I feel bad for people who get combative when they're postictal. I've had a couple of folks take a swing at me when I've been in the back of an ambulance, and to a one, they've always been super apologetic afterwards. One guy told me he accidentally slugged his mom once.
Someone advised me, years ago when I was training to be an EMT, to always try and back up a bit when you notice someone is coming around from a seizure, just so they don't wake up with a bunch of people waaaaay up in their space. (Puts your face a bit out of reflex insta-punch range, too.) Always seemed like good general politeness to me.
when we open ourselves to be aided -- to be vulnerable -- we can become better and stronger and more whole people.
Something that I try to keep in the back of my mind is that in a town of 30,000 people, on any given day, somebody is having the single worst day of their life. If you happen to run into that person, the least you can do is not make it worse, and maybe try to make it slightly better if you can.
posted by Kadin2048 at 1:23 PM on April 5, 2019 [36 favorites]
A lab-mate in Grad school is married to a woman who has very similar issues. "Normal" life was possible for her only with a lot of help from her husband and all of her friends---we all were given instructions very similar to the "Seizure Plan"; what might happen, what to expect during and after, what to do if things went south. She never went anywhere without someone who knew her condition and what she might need in terms of help.
Having seen this only for a few years and around the edges, I still can't imagine how hard it must be to do all that alone and without a support network. It seems impossible.
posted by bonehead at 1:27 PM on April 5, 2019 [5 favorites]
Having seen this only for a few years and around the edges, I still can't imagine how hard it must be to do all that alone and without a support network. It seems impossible.
posted by bonehead at 1:27 PM on April 5, 2019 [5 favorites]
I've always identified SO strongly with the woman helping.
I can't deal well with being the one needing help. I resent it deeply.
Vulnerability sucks. Totally.
It's so NICE helping those in need! You can feel GOOD!
posted by Goofyy at 2:36 PM on April 5, 2019 [5 favorites]
I can't deal well with being the one needing help. I resent it deeply.
Vulnerability sucks. Totally.
It's so NICE helping those in need! You can feel GOOD!
posted by Goofyy at 2:36 PM on April 5, 2019 [5 favorites]
Something that I try to keep in the back of my mind is that in a town of 30,000 people, on any given day, somebody is having the single worst day of their life. If you happen to run into that person, the least you can do is not make it worse, and maybe try to make it slightly better if you can.
HOLY SHIT! That's true! If an average modern lifespan is 80 years, that's 29,200 days, give or take, and in today's America I doubt the average is that high. One of those days has to be the worst. So out of 30,000 people, there's a good chance that one of those people is on that worst day at any given time.
Thank you Kadin, that's a really helpful thing to point out. My goal when out in the world is always to not make anyone's day worse, but that's a particularly useful information for perspective.
posted by Caduceus at 3:05 PM on April 5, 2019 [12 favorites]
HOLY SHIT! That's true! If an average modern lifespan is 80 years, that's 29,200 days, give or take, and in today's America I doubt the average is that high. One of those days has to be the worst. So out of 30,000 people, there's a good chance that one of those people is on that worst day at any given time.
Thank you Kadin, that's a really helpful thing to point out. My goal when out in the world is always to not make anyone's day worse, but that's a particularly useful information for perspective.
posted by Caduceus at 3:05 PM on April 5, 2019 [12 favorites]
Oh, wow I missed that. I thought for sure she was in NYC for some reason. Doesn't really change that much, though.
Plus the ambulance just costs $75 cdn instead of $800 usd plus mileage.
I have a fuck you I'm angry face and an unkempt hobo beard so people don't ever ask me for help but if I see somebody who looks like they need help, even if they are just slightly lost looking, I offer it because so many strangers have helped me out at various times that I have a big debt to pay forward.
posted by srboisvert at 3:14 PM on April 5, 2019 [4 favorites]
Plus the ambulance just costs $75 cdn instead of $800 usd plus mileage.
I have a fuck you I'm angry face and an unkempt hobo beard so people don't ever ask me for help but if I see somebody who looks like they need help, even if they are just slightly lost looking, I offer it because so many strangers have helped me out at various times that I have a big debt to pay forward.
posted by srboisvert at 3:14 PM on April 5, 2019 [4 favorites]
One of my loved ones has seizures and a few times that I know of (I'm sure there have been others) his life has been saved by people who were going about their days and were probably wondering in the moment whether or not just to mind their own business. He is extremely brave, that's a given, but so are they.
posted by sophieblue at 3:28 PM on April 5, 2019 [4 favorites]
posted by sophieblue at 3:28 PM on April 5, 2019 [4 favorites]
I'm epileptic, but my seizures happen on a yearly or, at worst, monthly basis. I can't imagine having to deal with them multiple times a day. My God.
posted by brundlefly at 5:05 PM on April 5, 2019 [4 favorites]
posted by brundlefly at 5:05 PM on April 5, 2019 [4 favorites]
Gosh, what that young woman must go through.
I have apparently become the perfect intersection of the sets of "looks like she probably comes from the Midwest and is nice" and "seems to know what she's doing and where she's going in the city," which means I get asked for help/directions/etc. a lot. (I know. Some of you are laughing.) I really do try, but I can't completely abandon my street smarts. A young girl like that is probably the easiest--even if she's working with a pickpocket, they're unlikely to be out to beat the crap out of you or anything. It's a lot harder when someone who's much bigger or looks like an infinite well of need approaches you. I do give change to people on the street, but not to people who approach me, and it can be hard to judge whether they're coming in for the usual begging or a specific request for assistance.
posted by praemunire at 8:09 PM on April 5, 2019 [4 favorites]
I have apparently become the perfect intersection of the sets of "looks like she probably comes from the Midwest and is nice" and "seems to know what she's doing and where she's going in the city," which means I get asked for help/directions/etc. a lot. (I know. Some of you are laughing.) I really do try, but I can't completely abandon my street smarts. A young girl like that is probably the easiest--even if she's working with a pickpocket, they're unlikely to be out to beat the crap out of you or anything. It's a lot harder when someone who's much bigger or looks like an infinite well of need approaches you. I do give change to people on the street, but not to people who approach me, and it can be hard to judge whether they're coming in for the usual begging or a specific request for assistance.
posted by praemunire at 8:09 PM on April 5, 2019 [4 favorites]
I too am an epileptic, but I'm one of the lucky ones; my medication stops me from having seizures, full stop. I have never needed to carry around a seizure plan.
I'm glad that women like this are there to help people like me, but less fortunate than me.
posted by vernondalhart at 12:44 AM on April 6, 2019 [1 favorite]
I'm glad that women like this are there to help people like me, but less fortunate than me.
posted by vernondalhart at 12:44 AM on April 6, 2019 [1 favorite]
I’m a big sister and a woman in the world.
Yes, yes you are.
posted by chavenet at 1:48 AM on April 6, 2019 [2 favorites]
Yes, yes you are.
posted by chavenet at 1:48 AM on April 6, 2019 [2 favorites]
I was sitting shoulder-to-shoulder on BART in San Francisco a few years ago and the pregnant woman next to me started seizing. I had no idea what to do and looked up at the woman standing in the aisle next to me and said: "help me."
Fortunately, that woman knew what to do and the woman came out of her seizure while I was still there.
posted by bendy at 3:24 AM on April 6, 2019 [4 favorites]
Fortunately, that woman knew what to do and the woman came out of her seizure while I was still there.
posted by bendy at 3:24 AM on April 6, 2019 [4 favorites]
I'm that guy who can be walking through some neighborhood in a city and see 4 people in front of me walk past a guy next to the wall and him not interacting with them at all, but when I get there, "hey, man, you got a smoke?"
I have a giant grey beard and barbered short hair (usually wearing a cap) but there's something about me that draws people. I have the strangest experience standing in line for concerts when people I have no idea who they are suddenly greet me warmly. Turns out I was in line with them (either to get in or for concessions) at a previous show. It's weird to be recognized like that.
posted by hippybear at 3:32 AM on April 6, 2019 [3 favorites]
I have a giant grey beard and barbered short hair (usually wearing a cap) but there's something about me that draws people. I have the strangest experience standing in line for concerts when people I have no idea who they are suddenly greet me warmly. Turns out I was in line with them (either to get in or for concessions) at a previous show. It's weird to be recognized like that.
posted by hippybear at 3:32 AM on April 6, 2019 [3 favorites]
I swear to Christ, it's really weird, but most of the time I get offers of help with my wheelchair I'm like, chugging along
I get most offers (and also the situations where someone has just decided to push me whether I want them to or not) when I'm going up ramps. I try to tell people, "This is a workout for me! I'm working on arm strength!" A lot of times my 11yo is at the top of the ramp cheering me on: "You can do it, mom! Go, go, go, go! You got this! Just a little farther!" and then we have a big ridiculous celebration when I make it to the top.
posted by Orlop at 5:26 AM on April 6, 2019 [8 favorites]
I get most offers (and also the situations where someone has just decided to push me whether I want them to or not) when I'm going up ramps. I try to tell people, "This is a workout for me! I'm working on arm strength!" A lot of times my 11yo is at the top of the ramp cheering me on: "You can do it, mom! Go, go, go, go! You got this! Just a little farther!" and then we have a big ridiculous celebration when I make it to the top.
posted by Orlop at 5:26 AM on April 6, 2019 [8 favorites]
...but, as I think about it, maybe those spotting me as an ex-Midwesterner are right, because, in a situation where I did feel it was safe (and not just infeasible--people can't just not show up at work, nor can you just hand strangers the week's budget), it wouldn't occur to me to do anything else but help. It's so ingrained that one of my close friends, who has vision problems, had to gently but firmly ratchet me down on the general helping ("praemunire, ME DO!"). (I do work now to be extra careful to be respectful in this area; sorry to anybody disabled I got this wrong with in the past!) This isn't saintly, it's just...living in a society?
posted by praemunire at 11:07 AM on April 6, 2019 [1 favorite]
posted by praemunire at 11:07 AM on April 6, 2019 [1 favorite]
What's haunting me about this story is the repeated "I don't want to bother you".
The resignation to her situation, the acknowledgement that she's placing a burden on strangers that might be unwelcome, the sense I get that she's living as damaged goods in a world full of mostly good people who will help her but she knows asking is a risk every time...
Those six words, as I sit several hours after having read this piece, are breaking my heart.
posted by hippybear at 11:29 AM on April 6, 2019 [9 favorites]
The resignation to her situation, the acknowledgement that she's placing a burden on strangers that might be unwelcome, the sense I get that she's living as damaged goods in a world full of mostly good people who will help her but she knows asking is a risk every time...
Those six words, as I sit several hours after having read this piece, are breaking my heart.
posted by hippybear at 11:29 AM on April 6, 2019 [9 favorites]
"I don't want to bother you".I can't speak for this young lady and I don't want to that guy who makes the thread about him but personal experience gives me a slightly different shade, a little tint of colour on this.
I can't speak for her but this is my life. I'm an adult, educated, working with a broad and deep skillset that isn't easy to replace. But every couple of years my seizures go from a couple a week to a couple a day and I'm unemployable. As it is I can't drive, don't cook by myself, need to bring an advocate to get reasonable healthcare, can't afford travel insurance that will actually be honoured. And medication side effects mean that I give hope of ever having a "good day" that lasts more than 12 hours for the hope of not having more than 2-3 "bad days" a week. Maybe. The people I know laugh a little (I'm semi-infamous for packing all kinds of crap around with me) but it's hard not to overcompensate for being a little flakey, a little absent minded, a little unreliable by simply being prepared for anything. The EDC threads are my guilty pleasure.
Above and beyond playing for Team Guess the constraints no one else can see mean that "I don't want to bother you" a very important piece of my plan for being an independent adult. Not just someone who contributes and can be relied on, but someone who I can rely on. Everyone has good days and bad days and, generally, drifts back and forth across their personal spectrum. Me I just get blackout drunk several times a week and spend part of nearly every day hung over. And I don't drink. I work in para sport - it's a "non qualifying" permanent impairment.
"I don't want to bother you" can speak so many words in a many-layered pastiche. They are 6 truly heartbreaking words and should be a call to action for all of us; in any context.
posted by mce at 1:12 PM on April 6, 2019 [15 favorites]
I once had a random bout of low blood pressure that made me pass out three times in the street in London in quick succession. By the third time, my face was pretty bloody from me landing on it. Every time I woke up and got up again, I just kept thinking “I just need to get home,” until I passed out again. Partly because I didn’t want to bother anyone, but also from a powerful, laser-focused “I need to crawl into a quiet hole on my own and be hurt” instinct.
But by the third time, I realised getting home was not realistic. Some teenagers were walking past me and one of them, bless her, simultaneously gave me a horrified “I don’t wanna get caught up in this mess,” look, and asked if I was all right.
Fortunately for us both, at that moment, another woman appeared as if from nowhere, probably only aged about 20 herself, with her arms outstretched, and said: “Come with me.”
She led me across the road to her house, where her bedridden grandfather spent his days sitting in the window watching the world and had seen my bumpy progress down the road. They called me an ambulance, her mum bought a spotless white towel soaked in water to hold to my bleeding face, and off I went to Homerton A&E (which was another nightmarish story in itself, but not nearly as nightmarish as the US healthcare system - at least the whole escapade didn’t cost me a penny).
I took the young woman some flowers and a thank you card afterwards, and I still think so warmly about the sheer relief with which I saw her outstretched arms sweeping towards me as she took charge when I’d realised I was no longer capable. And even of the horrified-but-knowing-she-should-help teen.
Weirdly, it’s not a traumatic memory at all - I think partly because I was generally healthy and in my 20s and this felt like a minor blip in my fortunate life of feeling generally safe and invincible, but also because the warmth of my Good Samaritan has overwritten the fear of being hurt and helpless in the big city.
It’s nice to be nice.
posted by penguin pie at 3:47 PM on April 6, 2019 [12 favorites]
But by the third time, I realised getting home was not realistic. Some teenagers were walking past me and one of them, bless her, simultaneously gave me a horrified “I don’t wanna get caught up in this mess,” look, and asked if I was all right.
Fortunately for us both, at that moment, another woman appeared as if from nowhere, probably only aged about 20 herself, with her arms outstretched, and said: “Come with me.”
She led me across the road to her house, where her bedridden grandfather spent his days sitting in the window watching the world and had seen my bumpy progress down the road. They called me an ambulance, her mum bought a spotless white towel soaked in water to hold to my bleeding face, and off I went to Homerton A&E (which was another nightmarish story in itself, but not nearly as nightmarish as the US healthcare system - at least the whole escapade didn’t cost me a penny).
I took the young woman some flowers and a thank you card afterwards, and I still think so warmly about the sheer relief with which I saw her outstretched arms sweeping towards me as she took charge when I’d realised I was no longer capable. And even of the horrified-but-knowing-she-should-help teen.
Weirdly, it’s not a traumatic memory at all - I think partly because I was generally healthy and in my 20s and this felt like a minor blip in my fortunate life of feeling generally safe and invincible, but also because the warmth of my Good Samaritan has overwritten the fear of being hurt and helpless in the big city.
It’s nice to be nice.
posted by penguin pie at 3:47 PM on April 6, 2019 [12 favorites]
I had my first (fortunately, one of very few) panic attack in a Sainsbury's in Oxford. I had to sit down, right there in the checkout line. I still remember the irritation with which I realized people were reacting to me more as a violator of social convention than as someone clearly having some kind of minor health emergency.
posted by praemunire at 6:31 PM on April 6, 2019 [3 favorites]
posted by praemunire at 6:31 PM on April 6, 2019 [3 favorites]
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posted by bleep at 10:59 AM on April 5, 2019 [13 favorites]