Sunday, November 7, 2010

First Responders & Me.

One of the topic suggestions I was given was "how to handle any paramedics or police officers who should happen to arrive during a seizure". This is very much a my-preferences entry. Other people will have different protocols. Some of them may even involve not being terrified of first responders and law enforcement and hospitals.

Let's say it's a partial complex seizure, since even the police officers who stop me for Walking While Autistic can manage to not fuck up too badly in face of a generalized tonic clonic. I hope.

So you're walking down the street with me and my eyes go all vacant and I'm doing the hand thing and all I can say is "I dunno". You're not letting me walk into the street, and I appreciate that. You're calm and not making sudden movements or touching me suddenly and anything like that. Then, a wild police officer appears!

He probably addresses me and asks if I'm alright. Assuming he isn't so aggressive I turn and run, the answer will be "I dunno". That's where things get bad for me really quickly. That's when his (or her, but all the ones who stop me for WWA seem to be male, hence the pronoun) cop reflex jumps from 'different' to 'seriously fucked up'.

The single best thing someone can do for me at this point is to tell the officer that I have epilepsy, this is a seizure, everything will be fine as long as no one gets in my face, thank you for your concern. If you can make him go away, so much the better, but I don't know how to make that happen. Getting in my face-which law enforcement officers DO-is just asking for a bad situation. Under no circumstances let him get in my face or touch me. The self preservation reflexes that are still active are the kind of things that get people tazed. I carry identification that say I have epilepsy for a reason, and this is one of them.

Now let's say the cop happens across us walking down the street when I'm postictal. I'm kind of surprised this hasn't happened already, since there comes a point that I am bone-tired but have access to almost-coherent speech. If I don't want to walk, or am disoriented and afraid to walk, I'll whine and that's a whole bag of "that doesn't look right". Tell them that I have epilepsy, I am recovering from a seizure, and I'm probably still pretty disoriented. I don't know if I'd actually talk to them or not at that point, and if I just had a seizure I can only sign (and am probably not so OK with the walking at a normal rate thing. And will pretty certainly flip my shit if someone I don't know gets in my face. Especially if they do so aggressively). I can register that my bracelet may be useful post-seizure, but for some reason officers of the law aren't willing to read them in my experience. If you can get them to understand that yelling at me isn't going to do anything but cause problems, please, please do. Being aggressive doesn't cure epilepsy.

Or. Let's say for some reason a wild paramedic appears! If they have an ambulance, they need to turn that shit off. I have a visceral hatred of loud sirens and of flashing lights, & she's going to have to suck it up and deal. I didn't want them there anyway. I. Do. Not. Want. An. Ambulance. I am not on drugs. I take my medications religiously. I do not like being touched at tickle-pressure, or at all by strangers. Even if I'm still out of it, any poking and prodding she insists on doing, she's going to have to move slowly, explain everything, and keep everything where I can see it. I probably will be uncooperative and resistant or completely passive because I want her to fuck off. If you can get a good samaratin wannabe paramedic to go away, you're my hero.

The generic themes here are get them to go away, I do not want to go to the hospital, their flashy lights can go play in a fire, and I am very particular about how I accept being touched, especially after or during a seizure, and they will do it wrong. Everything goes much more smoothly if intrusive, aggressive people who I don't know just aren't around me-hence my hatred of hospitals. There are too many ways for them to fuck up, and that has lead too many people into injurious or fatal situations. If I'm going to be a statistic, I'm going to be a living statistic, thanks anyway.


Anonymous said...

I think you spelled "led" as "lead" in the second to last sentence.

P.S. I read every entry of this blog today. Great work!

Melody said...

I need to show this to the people at my college health office. Ever since I was 13, I get dragged around and poked and prodded and ambulances sent for mild seizures as well as just autistic oddness, maybe half a dozen times a year. This isn't just a trivial annoyance; I'm sometimes stuck in the emergency waiting room until morning the next day just so I can talk to the triage nurse for permission to go home (which fucks up my sleep cycle into chaos and interferes with my ability to attend classes). It uses up allotted medical visits, so I'm starting this year out without insurance covering medical visits because of being taken to the emergency room when I didn't want or need to go there. Just because you think this is the most prudent way to CYA doesn't mean it is.

I doubt it would help though, since I already have explained these points in detail, and nothing changes. It sucks when a school security officer stops you out of the blue during passing period and orders you to go to the health office because, and I quote, "You don't look normal." Fuck that. She kept arguing her nonexistent point, grabbing my arm to prevent me from going to class, until she called the principal who finally let me go after about five to ten minutes. This is practically a bimonthly occurrence.

Seriously, any clueless people in these positions (security, police, teachers, paramedics, whoever) need to realize this: to the disabled person you're haranguing, you look as obviously silly and horrible as a person ordering Stephen Hawking to stand up out of his chair, and then insisting that he's being unco-operative or needs to go straight to the emergency room when he doesn't stand. It makes you look like an idiot and an asshat, not like a caring professional just trying to ensure you're healthy. Just because a disability is invisible doesn't give a free pass on DOING NOTHING TO CHANGE EVEN AFTER THE DISABLED PERSON HAS CLEARLY EXPLAINED WHAT IS GOING ON AND WHAT IS AND ISN'T HELPFUL. I can understand making mistakes the first time, but when the same personnel make the same mistakes with the same people, it's really fucking annoying and highly disruptive to educational and social functioning (not to mention the physical and mental health consequences of being food-, medication-, and sleep-deprived in an ER way more often than is necessary.