About that Twitter thread with the girl having seizures on the train

A few days ago, a woman on Twitter posted about her experience the previous evening. (Here's the easy-to-read version she blogged later) She was on her way home on the train when suddenly an 18 year old girl sitting across from her asked if she was getting off soon, handed her a laminated sheet, informed her that she was about to have a seizure, and requested that the woman just keep and eye on her and follow the laminated seizure plan until the woman had to get off. The woman ended up staying with her until the girl's stop and walking her home. Go give it a read.

My job was to make sure that no one interrupted her getting to her door.

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 M 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.

We have one of those laminated seizure plans. It hangs at home on our freezer and travels with me on the airplane. We have another, unlaminated one we keep 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 the laminated one with him and hand it to strangers who "seem nice".

Once M was diagnosed with the SCN1A mutation, all of the seizures he was having went from terrifying events which we didn't understand to things which were still scary, but which had a root cause, and we knew to expect them and how to respond to them, and they became in a way routine. It's a shitty routine, but routine nonetheless. When we call an ambulance now it's only because a seizure has gone on for a long time without responding to rescue medication, an exception rather than a rule, but we're at the point where the dispatcher will ask "Oh, you're the ones with the long driveway, right?" and when my husband recently called an ambulance there was a new guy on the crew and my husband overheard the other paramedics telling him, "just follow his lead, he knows what he's talking about." It's a strange side of the looking glass to be on when the people you previously relied on to take authoritative charge of scary situations are now the ones waiting for you to make the tough calls. It's a shitty side of the looking glass where this is just life. But it is life now, and we can't (and don't) treat every event as the emergency the same event happening randomly would seem to other people.

One thing that stuck out to me, reading it, was the woman's willingness to follow the girl's lead, and the degree to which that must have played into the girl's evaluation of who "seemed nice" on the train. She didn't insist on knowing better or going against the plan she was given. Would a man have followed the girl's lead equally well, or have "known better" and ruined the girl's night (or potentially even finances, if she were in the US) 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? Who will do exactly as I ask and not try to insert their own judgement? Who can I trust that I will be safe with while I'm incapacitated? What a mental load to carry on top of everything else. What a mental load M may have to deal with some day.

Anyway, I have all the feelings about this woman's story, 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 ambulance" please, please don't. Follow the seizure plan. Get the person through the event and hopefully to a safe place that they can recover. A seizure plan 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.

And I do mean that literally. An uninformed paramedic or ER tech giving M the wrong rescue medication -- sodium channel blockers, which are common for seizure rescue but which are contraindicated for his very rare type of epilepsy caused by a sodium channel mutation -- could send him into a multi-day seizure state that is life-threatening. When we call an ambulance or go to an ER, we're armed with documentation describing what his condition (and treatments, like keto) mean for the care he would receive. I've been looking at ways to make all this info more portable or easy to find if my husband or I aren't available - there are special embroidered seatbelt covers that will hold emergency medical information, bracelets that indicate unique conditions and point helpers to where rescue medication is stored, etc. That's all in our future. But it all relies on the people who want to help trusting the information they're given - and I hope if that's you some day, you'll trust the person who needs help to know exactly what it is they need, and you'll be the helper they need to just get home safe.