Repost-10Hz lights

This went up on my old blog about a year ago. Reposted for Epilepsy Month.

They're everywhere. But they don't need to be. It's actually probably illegal for them to be as many places as they are.

Yeah, I get that I can't go clubbing. I don't care that I can't go clubbing, particularly. But I do care that walking through downtown is fraught with hazards. Not just being chased down the street by aggressive panhandlers (true story) or someone taking a stoplight as a suggestion or thinking they've got right of way on a right turn because they're bigger (that happens too), but 10 Hz lights.

Everywhere.

They're on emergency vehicles, which I don't really get. You're going to create another emergency on the way to your already existing one, buds. There are other flash frequencies if you just can't give that up, I promise! There are whole STUDIES on what's least likely to trigger seizures in epileptic people. Since police officers are reluctant to, oh, read medical IDs, really, it's in their best interest to just stop triggering seizures already. And paramedics? It's damned irresponsible of you to leave so much havoc in your wakes. You should know better.

They're the way of alerting pedestrians (you know, people who don't drive? In this great state, incidentally, Thou Shalt Be Seizure Free for at least a year to drive legally) that someone is pulling out of a parking garage. Someone who feels they have right of way because their SUV outweighs you by a couple tons. Yep! Mid aura I am TOTALLY paying attention to that strobe light. I'm looking for the fastest way past it, which is a straight line. Past the SUV. And I *get* an aura.

The public transit system has been failing pretty hard too. I will end the next driver who flashes his lights at me. I will end more ferociously the next who tells me to get a strobey thing so as to be seen. I wear neon orange hoodies. They can see me, and I can actually function while wearing one! Amazing! The lights on the trains tend to flicker while going over bridges. And yesterday, they were giving strobe lights to bikers. What. The fuck. Steady beam, motherfuckers, you can use one.

Bikers, you aren't superior either. Your headlight? 10 Hz. I don't really care that your bike is greener than a bus. Your headlamp makes me want to call you horrible nasty things, assuming I can summon the language. Why does it need to flicker at all? Is there a reason for that? A sizeable portion of my first million, and hipster/socially aware bragging rights, to the first person to make a neurologically friendly lamp. I'm sick of having this conversation IRL, and sick of justifying to near total strangers "you're in good shape. Why don't you do the commute by bike thing?". "well, you see, ending up a mangled mess because I lost awareness of my surroundings because of my own headlamp isn't how I want to be remembered". "you'd be fine". "no. I wouldn't. And you don't matter enough to me for a demonstration".

And then, in the most ill conceived idea in the history of ill conceived ideas...and there have been a lot...some either extremely ignorant or extremely hateful jackass decided that the ideal thing to put on a fire alarm is a FUCKING STROBE LIGHT. Not a red light. Not something changing colors. A fucking EEG grade strobe light. Yes, a visual something is needed to be accessible to the Deaf. That doesn't mean that folks with epilepsy need to die of smoke inhalation/status epilepticus/wandering straight into flames because of the direct effects of a supposed safety device. Fuck that with the business end of a rake. It's not acceptable.

Now go point this out to an 'enlightened' person. I live in a liberal city. There are a lot of them. "But you don't, you know, have a DISABILITY". 'Scuse me? Pretty sure that's not your call, sweetcakes, and if all these things are barriers--and they are dangerous barriers--that's textbook social model (not to mention all the medical crap with epilepsy). Then there's all the crap about if it's that bad, don't go places, or THOSE places, or don't go there alone.

Yeah. No. This is what accessibility means. There's no reason I shouldn't be able to walk down my street, or from place to place downtown, alone. The flashing lights all over are the barrier. They're not even a difficult barrier to change, if people get past "that's the way it is"ness. I'm not asking to go to a dance club safely. I want to know that walking through public areas of my city isn't going to send me home dazed, confused, headachey, crabby, and postictal.

That should be a right. It should go without saying. Is it really that much to ask?

My seizure first aid

In someone with documented epilepsy, a seizure is not usually an emergency. The line for "emergency" is drawn in different places, usually involving things like injury, right after a knock to the head, excessively long (usually 5 minutes), or repeated seizures without regaining consciousness in between.

For absence seizures, I don't need or want anything. If I have a whole bunch, maybe tell me (and be prepared for me to say nonono) , if I have one on the stairs or something I'd rather not fall down too many. That's about it.

With tonic-clonic, get out a watch & time that shit. If you stick something in my mouth, I will assume that you don't hold your teeth in high regard either & consider taking them off your hands, and if you try to hold me down we will likely both get hurt. Just turn me on my side & put something under my head if you can do that without hurting yourself-I'm remarkably durable-otherwise, just wait till it's over & don't let me choke on my own drool. Isn't that an attractive mind picture?

Usually I have partial complex, which take a little more finesse since I can react to my surroundings (ish. not quite logically, but there are reactions). I vehemently do not want an ambulance. Go ahead and time things, but as soon as I start signing at you the timer stops. If I'm doing the wandering thing, don't let me walk into traffic. But don't be abrupt about that, because, again, we'll both get hurt. No matter what you do, stay calm. Otherwise I'll freak out and not understand why. Keep your voice level-I may not understand the words, but I do pick up on emotional tone, & a tired and confused post-seizure period is way better than an upset and anxious one.

If it actually IS an emergency, well, that's why I wear a medicalert, but it almost never is.

"What the hell was THAT?" "nng, seizure"

This one'll probably be quick, easy, with very little swearing.

The first comment on my I-need-ideas post asked what my physical signs are before a seizure. I can do that! So, here it is. This is just what I know, because there are things apparently that other people can call out, but I don't know exactly what they are.

There's no warning before an absence seizure. They're really short, so I don't often notice them anyway. My eyeballs just roll up a little, eyelids flutter a bit, and I sometimes lose a little muscle tone. It kind of looks like I'm nodding and rolling my eyes.

Before a partial-complex there are some actual signs. For some reason I tend to have rapid fire absence seizures right before a partial complex-and this is completely neurologically backwards, but it's a consistent pattern. As soon as you point out to me that I'm having seizures, I will deny it heartily. I'm not sure if the quality or forcefulness of the denial is in any way related to the likelyhood of having another seizure, but it might be.

I lose a lot of facial expression before a seizure, sometimes my right hand starts shaking-I try to hold it still, because that totally helps, right?-and my eyes glaze a little bit. My speech changes, in that I stutter or just use very few words. I sign in a lot of environments and situations, but if I'm using sign to pull language and not really succeeding, I'm either really overwhelmed or on my way to seizureland.

The way I act changes too. There's this oh-god-oh-god-I-am-going-to-seize feeling, but by the time I get there I'm really spaced out, so the panic this incites isn't exactly effective panic. I get really passive and unable to make decisions beyond "yes or no", and sometimes even that is too complex. If I trust someone, right before a seizure I will pretty much take their advice or suggestions uncritically. That's nearly as unlike my usual me as it gets! If I know it's coming, I want to be away from people and sounds & do my best to make that happen.

Before a tonic-clonic seizure, I usually have a partial complex, & I only have them when subjected to multiple precipitating factors. Yay progress!

My in-case-of-seizure preferences are tonight or tomorrow. Riveting read, amirite?