Tuesday, December 7, 2010

I reserve the right to be pissy.


I don't have to be 'nice' in explaining my needs. It's my right to have a number of them met. It doesn't matter if I coat in in candy or dip it in acid-it's still a need. I don't HAVE to be nice to you when your vest or your helmet or your phone charm is strobing in my face. Telling me you didn't know or you didn't think you'd come across someone for whom it's a problem isn't going to impress me; you could end the sentence at "I didn't think".

No matter how I present them, my rights are my rights. My right to not have a preventable seizure or to not be run off the sidewalk (cyclists, I'm looking at you. Well, I'm not, actually, because you're neurological hazards on wheels, and if you run into me because you thought the sidewalk was yours so help me I will end you AND your bike) or to be presented important information in a manner I can process and use or to block sounds that overwhelm me in a manner of my choosing.

My rights are my rights.

I have a right to be nice. I have a right to be snarky. My only responsibility is the one I have to myself, that of getting my needs met. I don't really care if you're offended if I'm abrupt or pissy. Your feelings are not my concern. You really have no place lecturing me on how I present my needs, especially in a situation where the only option is to do something about it now. Being nice doesn't work. Letting my snark flag fly does. Talking to you as though you're choosing to be an asshat works a lot better than assuming you are unaware. Talking to you as though you're choosing to be an asshat gets your attention. Being nice doesn't. It just makes you feel fuzzy.

It is my right to assume you're an asshat. It is my right to be pissy when you are making my brain hurt. If you decide that it's your place to Argument From Tone me about my needs, my assumption that you are an asshat is correct.

They are my rights. Nowhere among anyone's rights are included the right to not be made uncomfortable or the right to not be offended.

Those aren't your rights.

Being pissy about mine is mine, though.

Saturday, December 4, 2010

I am not your inspiration.

I cringe every time I see a story about a person with disabilities doing something, anything. Why? Because the words "inspiration", "heartwarming", "overcoming obstacles", and similar set off my gag reflex.

My brain and body work differently from most people's. That doesn't make me inspiring. It makes me different. I happen to do things that most people with similar disabilities can't do. But guess what? I do things that most people without disabilities can't do either. It isn't inspiring that I do backflips, or teach kids to fly, or anything else that's a bit out of the ordinary. It just is. It's my life, not some story to warm the cockles of your over-privileged little heart.

And when people get all gooey over someone with a disability doing things within the realm of what's expected for a nondisabled person? I kind of want to go on a rampage with a spork. It is not inspiring when 2 people with Down Syndrome date. It's 2 adults having a life, and it's disrespectful and infantilizing to go "awwww" at it. When an autistic woman rakes leaves to pay for medical treatment, that's not adorable, that's a really sad statement on this country as a whole-don't be all "ZOMG I AM INSPIRED", but be disgusted that to afford necessary treatment someone has to go door to door. If you're going to be inspired at all by that, be inspired to change our world.

If you find yourself saying "That's so inspiring, I could never live with what that person does. And they do all by themselves! My heart is warmed!" you need a privilege check. Badly. It'd be upsetting if someone said it about you, and it's damn offensive when you say it about us.

Don't be inspired by us because we happen to be different. If you must be inspired, be inspired by our vision, our ideas. Don't be inspired by our existence. It's just my life, and I'm living it for me, not to warm your heart.

Thursday, November 11, 2010

What's a Rescue Medication?

I keep referencing rescue medications. Turns out not everyone knows what that is! Not everyone with epilepsy needs one, and there are rescue meds for other conditions-nitroglycerin for angina, for example.

For me, a rescue medication is something taken as needed to stop clusters of seizures. I try to take half a clonazepam during an aura since most of my seizures bring company.

That doesn't always prevent a seizure, but it seems to reduce severity and duration of what does happen. Having a rescue medication has made living a very active life easier because it can be the difference between a cluster of 3 and a cluster of 30 seizures.

Wednesday, November 10, 2010

Epilepsy and Gymnastics

This one is another "in my experience" one. This is in no way shape or form medical advice, and in fact I have met doctors who think that my choice of sport was evidence of a subconscious deathwish.

I've been participating in some form of gymnastics or another for years. I've had epilepsy for years. Most of these years overlap. I've dealt with medication changes, seizure fallout, side effects, and all the other joys while also enjoying a high-flying sport.

My primary form of gymnastics was tumbling and trampoline. My best event was always tumbling because everything is entirely what I can do with my own power. Sometimes my skills were a bit sluggish, but they weren't ever scary or particularly dangerous. Trampoline was my worst because you have to hit the trampoline 10 times and every change in body position or proprioception is magnified by the elasticity of the trampoline. It's also easy to get a little off if you aren't able to focus. Double mini trampoline is only 2 skills, so it was my best when I was sluggy. The worst I experienced with epilepsy meeting tumbling and trampoline was having a partial complex at a meet. I had to withdraw after my coach realized that everything I was doing during warmup was autopilot. I've never had a tonic-clonic while in the air.

I did artistic gymnastics as well. Floor was my best event for much the same reason tumbling was--it's what you can do under your own power--so even when I was a bit wonky, I could make something work. I was very good at beam in practice. At meets or during a medication change, beam went to hell because it's all about precision and attack, which I do not have when my body feels alien. Postictally I was pretty awful at beam, but nowhere near as bad as I could be on vault. Vault involves running as fast as you can at a stationary object and hitting a springboard exactly correctly so you can fly over it. Speed doesn't happen postictally. Visual perception doesn't happen postictally. I know exactly how hard I can run into a vault, and the answer is rib-dislocation-hard. Uneven bars was the hardest for me because being even a little off makes it hard to muscle through things, and every time my body or brain changed I had to completely adjust the timing of moves. It was never a strength problem, just a consistency issue.

I came mightily close to seizures at a couple of artistic meets because of the techno floor music trend, so I did compete while heavily benzodiazepined a few times. Sluggish gymnastics lead to sluggish scores, but I didn't ever get hurt, fortunately.

There were a few things I needed to do to make taking epilepsy to the gym relatively safe. First, I needed to get very familiar with the difference between "aura" and "I need to eat/I'm working too hard/I'm tired/side effects". Second, I needed to disclose to my coaches that I have seizures, what they look like, and what to do if they occur. We needed to discuss a seizure plan, and for a period of time I kept rescue medication in the gym office. Third, during every medication change I had to chart side effects that might matter & we had to adjust expectations during workouts and competitions. For a while I was playing catch-up with private lessons since a particularly hard period made learning anything impossible.

My coaches ended up learning a few of the subtle signs that indicated a seizure was imminent. We had an agreement that they could send me for a snack & ask me to get off the equipment if I was worrying them. If I needed to take a rescue med, it was fine and I didn't need to announce it. Part of our agreement was that I was to wear medical identification at all times gymnastic & I was to carry a seizure protocol card in case they weren't the very first people around if I seized.

There was a lot of planning involved, but I got to do the sport I love in face of prejudices that say I shouldn't have. I still love gymnastics-it makes me feel invincible, like I can fly, and I wouldn't trade that experience for anything.

Tuesday, November 9, 2010

Anticonvulsants & me

I've been on a shitton of antiepileptic drugs. People always ask me about them, their effects and side effects. So here we go, with the good, the bad, and the whatthefuck. These are in no particular order.

Tegretol: I really liked Tegretol. It was absolutely amazing for my seizures (both times I took it). Unfortunately, it ate my blood cells for breakfast (twice). Seizure free, alas, I felt like crap.

Trileptal: I did not so much like Trileptal either time I was on it. Both times I took it, I was extremely uncoordinated and my brain didn't work. It made me sleepy-for me, a plus-but it didn't actually work for the seizures. As in I started having frequent absences and had a few drop seizures. It kind of sucked.

Topamax: I took Topamax from 2003 until 2010. I really did well on it for the most part, though my effective dose went up and down depending on what else I was taking at the time. I did get a bit of cognitive dulling, but it wasn't bad and it did teach me left from right. I got kidney stones as well, and did have a few borderline tests of kidney function, which is why I stopped taking it.

Zonegran: I took this twice too. It worked, ish, and made me sleepy at first but that always wears off quickly. The first time I got a bit of a facial rash, but nothing severe, and the second time it seemed to aggravate my kidney stones. It made me slightly stupid but nothing I couldn't have lived with had it worked.

Lamictal: Yet another twice tried, twice failed. It worked more or less, and even eliminated an ongoing headache. I really wish that I could take Lamictal. Alas, I got the rash. Twice. The first time it was bazingly obvious; the second we thought it was recurrent sinus infections until I sneezed out my sinus lining. It was so cool. Disgusting, but amazing.

Keppra: I love Keppra. A lot. It more or less works for me. It makes me happier. It made me less dumb. I started taking it right after a significant car accident. Significant is a word which here means "I forgot how numbers work". Within 6 months my math and language skills were back.

Neurontin: I took Neurontin for a few years. When I first started it, I forgot how to get from point A to point B. After a few months I acclimated, which is why I was on it for years. It made me sleepy every time I changed my dose, which was a plus, but it stopped working for my seizures and I felt very overmedicated at the time.

Gabatril: This was a short lived experiment. In theory it would replace Neurontin, but it didn't. I felt extremely spaced out and wasn't particularly coordinated. Since it didn't seem to work, either, we stopped it at about 3 weeks.

Clonazepam: For a long time this was just an emergency medication. I had a phenomenal amount of emergencies, so we added it to my daily regimen for 6 months or so. Going off wasn't hard, and I did not feel as drugged as one would expect. If there were side effects, I did not notice them.

Lorazepam: This was my emergency medication while I was on clonazepam daily. It worked pretty quickly for me and was somewhat sedating. If there were side effects other than sleepiness, I am unaware.

Diazepam: I took this as an emergency medication at one point also. Since it has a long half life, it was ideal for use during hormone swings that bring on seizures. It's not particularly sedating for me.

Temazepam: Yet another rescue medication. My theory during the time I took it was that it knocked me out and gave me a hangover so that I didn't notice seizure activity. Nothing in my life has ever made me sleepier.

Vimpat: This is the most recent addition to the list. I switched to Vimpat from Topamax in mid-2010. I got some headaches and experienced both dizziness and vertigo, but so far it is absolutely worth it. I have had 2 six-week seizure free spells since the switch; that is a really big deal for me. I've had some anxiety that may or may not be related to the medication as well, but the trade off is something I am willing to live with.

Monday, November 8, 2010

My brain is not your punchline.

I've been searching twitter for the #epilepsy tag.

A lot of what I'm finding is awareness stuff, including Epilepsy Foundation retweeting their Seizure Smart link (I'd post it, but it's too simplistic). And then I'm finding things that make me stabby.

No, you don't have fucking epilepsy in your fucking arm because it's tired. That is called exertional tremor, and arms do not have epilepsy. Brains do, and while they can manifest as arm shaking, that's not the same as exhaustion.

Your friend who is angry is not going to have a godsdamned seizure. That isn't how epilepsy works. They can shout themselves blue at you for being an utter shithead, and yet chances are good they will not have a seizure.

A visually overstimulating video that gives you a headache does not mean you have epilepsy. Seizures do not feel like headaches. Headaches do not feel like seizures.

Whatever you are doing isn't going to "give you epilepsy". Jesus fuck. I could spit in your cheerios and sneeze on your face and put you in a room with all my seizure triggers and if you have a normal seizure threshold, it will not do diddly shit.

You aren't cute, you aren't funny, no, a Ceaser salad isn't dangerous, and my brain is not your punchline.

Sunday, November 7, 2010

Hit by a Neurological Truck

This is my last generic "so tell me about your epilepsy" post. I'm casting about my brain for topics that aren't wangst now, bc 23 days of "people with strobe lights and subwoofers should DIAF would get real old real fast.

The night this picture was taken (and I don't remember taking it) I had had a number of seizures. A double digit number of seizures. I looked and felt like shit.

That's pretty much the standard post seizure thing. I can't really focus. I feel like I got hit by a truck. Words aren't really happening. Understanding language may not be happening. Coordination, not happening. Visual processing, not happening. Moving fast, not happening. I'm tired, have a headache, afraid of stairs because they look funny, probably not really so good with the sense making, a little wobbly, and if I can process what you say, I've got receptive logic, but I don't have the language for expressive logic.

Right after a seizure I can sign but not speak and I want to sleep and don't want to move and I look like that. I actually probably do want company, and I probably want said company to talk to me as long as they aren't upset. I don't know why either, it's just a pattern. I guess if I feel like shit, at least I'm not alone feeling like shit.

I remember pretty much nothing from the few hours following a seizure, to the point of not always knowing how I got where I am. Good times, right?

The day after I look and feel like crap too, but I can usually get through the day. It's a headachey, cognitively screwy, very tired functioning, but it is functioning.

The day after the pic at the top:

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.

Saturday, November 6, 2010

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.


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?

Friday, November 5, 2010

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.

Partial WHAT?

The majority of my seizures are partial complex seizures. In my case, they live in the right temporal lobe. Left temporal lobe are more common, but I always did have to be difficult.

What that means is that a part of my temporal lobe says "hey, I'm bored! let's change it up!" and starts in with the unregulated activity. All of the unregulated discharges stay in the temporal lobe, rather than spreading to the entire brain (which causes generalized seizures, which are what most people think of when they hear the word "epilepsy").

Partial complex seizures can happen in any part of the brain, and each location looks different. Common seizure manifestations, depending on location, include hearing or seeing things that aren't there, random out of nowhere feelings and emotions, wandering, movements called automatisms (things like chewing air, lip smacking, picking at clothes), tingling in the extremities, and generally acting strange.

My seizures tend to involve language problems-no matter what is said to or around me, I respond with "I dunno". Apparently I sound disconnected, even by my standards. I stop what I'm doing, or half-ass keep going & chew on air and do...this THING...with my hands. Like my thumb and forefinger are drawing circles around each other. I do something very similar under stress, but not identical. Apparently there's a "lights are on, nobody's home" facial nonexpression going on, and if I was standing when it hit I tend to wander around aimlessly (as contrasted with after, but that's another post).

Everyone thinks of tonic clonic seizures as the real thing, but partial complex have caused me more problems. Police (and for that matter, pretty much everyone else) assume drugs rather than a medical issue if someone is standing there chewing on air and wandering vaguely with a vacant expression. That's just not the case. It's written on my medicalert, but who reads that? And since grabbing my arm is a good way to freak me out-even in a seizure, it's absolutely possible to trigger an automatic NO GO AWAY reaction-I live with the knowledge that something I cannot help may get me killed or injured at the hands of those who are supposed to help.

Since partial onset seizures are the most common, contrary to what Red Cross first aid training implies, that's kind of scary.

Thursday, November 4, 2010

"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?

Wednesday, November 3, 2010

What I Refuse to Sacrifice.

There are things that it's not wise to do with epilepsy. Scuba diving comes to mind, and as much as I'd love to try it, the rationale for passing on it until a year of oh so elusive seizure freedom makes sense to me. I understand why the powers that be don't want me to drive. But other than that?

I did high level competitive gymnastics & tumbling and trampoline with epilepsy. I teach the sport, and hope that no child in my care feels held back or feared because of a condition. I social dance (I know, I'm autistic. It works for me. Just go with it, I'll explain some other time). I have friends, and refuse to isolate myself in case of seizures. I go places all alone on the bus and on the train and on planes and by foot. No one is my keeper, nor should they be. As much as the general medical model paternalistic society would rather I didn't, I cultivate my independent streak and display it proudly.

The philosophy "Live as though each day is your last, and plan as though you'll live forever" is kind of where I am with things. I'd rather take some risks now instead of never get to experience things. Some precautions (medicalert bracelet, fairly liberal disclosure, living with a roommate, forgoing scuba diving) are reasonable. But I can't and won't live wrapped in them.

I wonder if dispelling some of the fear and manufactured mystery about epilepsy would reduce the well meaning encouragement to completely avoid risks? Maybe I'll know in my lifetime.

Tuesday, November 2, 2010

Same Old Keynote, Wrong Crowd.

So last month I went to the Autism Society of Oregon conference, which was theoretically on adult issues. Theoretically, I say.

Lee Grossman, president and CEO of ASA for about a zillion years, gave the same keynote he gives everywhere. Contrary to popular belief, I don't actually start the day angry, but damn, give me a big heaping pile of bullshit first thing in the morning and I'll get angry, and call you on it too.

So, this is an adult conference, right? He's been around at least a decade in ASA high up land, I know I'm not the only person to make very clear why his old schtick is unacceptable, or even the first. And you can imagine that at a conference supposedly focused on adult autism, there are going to be, like, adult autistics and people who recognize that autistic children grow into autistic adults, right?

The first thing that rubbed me wrong was before he even started. I guess I can forgive the puzzle ribbon, ish, but I cannot think of a single reason for the adorable age 10 and under poster children on the first slide. There are a whole lot of adult autistics. What's with the children?

Then he went into actually talking. The exactly one thing he said that I agree with is this: "the system is broken". It is. It is indeed broken. It spits us out at 18 or 21 and shoves us into the cracks.

Now, hey! Let's get onto why! Call on me call on me! Or call on Mr. CEO, as that's where the rest of the keynote went!

The whole thing was about how it's a family issue. "When one family member has autism, the whole family has autism". MY ASS. My autism is not about my parents or my siblings or my non autistic friends and extended family. It is my neurology. It is not theirs. No matter how much they listen to me, how much they try to understand, it is not about them. It's a lot easier to protect the martyr mentality when you insist it's about you, but that's just not how it is. As long as it's considered to be our parents' thing, though, the system will continue to be broken. We keep having to fight for ownership of our own experiences, and that's not right. It isn't even wrong. It's so backwards there is not yet an adjective for it.

And he was just getting started! After that we got the whole "vaccines are a likely cause of autism!" shoutout, we got the whole cure or nothing thing--fun fact! You can help people, you can help them a whole lot, without trying to "fix" them. Sick people need cures. All people have some sort of support needs. And while we're on the whole sick people thing, Mr. Grossman is guilty (again) of comparing autism to cancer & heart disease. I know quite a few people who've died of cancer. I know quite a few who died or will eventually die of heart disease. The only people who die of autism are the ones who are left to rot by the system and those who are killed by their parents. That isn't dying of autism, though. That's dying by a parent-centered system.

The real winner of the whole thing was the alarmist autism as a tragedy language. According to the Autism Society, people like me are:
-a tsunami
-a tidal wave
-a national emergency
-a crisis
-something to be combated.
Charming, am I right? Full of human dignity and respect of autistic personhood, huh? Yeah, I didn't think so either.

Then, because my irony meter wasn't broken enough, came the bit that would have been pretty awesome had he left out the middle hour or so of his 75 minute speech: a nod to civil rights and quality of life, employment and higher education, and how damn hireable we are.


Yes, because what everyone and their dog knows about autism right now is that we are a violent earthquake or something, in large part because of the fearmongering rhetoric of Mr. Grossman and those in similar positions, employers are really going to be lining up to hire people who they know are autistic. Absolutely! That's how the world works, isn't it?

Oh. Wait. Back here in reality, prejudice wins.

If you really want to improve my quality of life, stoppit with the Tragedy Model of Disability. Stoppit with the alarmist language. Stop making it all about parents, professionals, everyone but autistic people. People high in the autism charity infrastructure who do these things are a bigger part of the problem than autism itself. Oh yes, I went there. It's just not about you, Mr. Grossman and counterparts.

It's about us.

I shouldn't have to beg

I wrote this when I was having Issues with very basic "don't make me seize, 'k?" accommodations. It may be a bit wangsty. Please, give me some suggestions so I don't end up with a month of epilepsy wangst. As is my custom, there is swearing.

Institutionalized ableism becomes clear in a number of places and situations. Where it hits hardest, most gut-wrenchingly, is in asking for simple, by which I mean no-effort, accommodations and consideration for disabilities that aren't easily seen.

Yeah, I know, not having a strobe light everywhere is a fucking drag.I took up the hobbies I did because there shouldn't be any there. It doesn't matter that "you didn't know". A flashing light is a dangerous thing to have in this setting-people are moving in a number of directions fairly fast! No, I won't be nice or apologetic about stating my needs. It's my health vs your ego & your "but I dunwanna". Health wins. Access wins.

So many simple requests come down to need vs ego. Yeah, I know, your feelings are hurt that you aren't funny, you're actually kind of a douchebag, and I just don't have it in me to sugarcoat. I'm not going to. This isn't a preference here. This is a need. Were it just a preference, there'd be a lot less panic involved.

Yeah, panic. When you make me beg for a place to be relatively safe, safe as in non seizure inducing (and we all know I deal with audiogenic issues in my own way), it makes me panic. The power dynamic of begging means you can say no. It means that you, should you deign from your place of privilege to say yes, have a hold on me. And it's not like knowing who I have a crush on or the inane things I did when I was 10-it means you can revoke my ability to safely navigate a part of my world at any time, for any reason or none. A presumably public part of my world.

That's not how it should be. Access should be a right, not a privilege to be revoked at any time, to be whittled away for reasons and justifications that come down to "it's hard". Disabled personhood, epileptic personhood, autistic personhood is still personhood. My access matters just as much as the next person's.

I can't be silent on this as my world threatens to get narrower & narrower. I'm one of those uppity bad disabled people who won't stay silent and in my house. I don't know my place, you say. I defy notions of where my place is. My place is out here living my life to the fullest.

But the panic takes its toll. The seizures take their toll. The nastiness from others, that takes its toll too. By my mid 20s I've been threatened with a knife, I've had my skull bashed, and I've gotten more death threats than I care to count for the crime of wanting a life-an accessable life. If I'm abrasive about my needs, certainly nothing justifies assault with a deadly weapon, when I was 19 or now.

Stop narrowing my world. You won't even miss the flashies. You won't even notice other access features I or other people ask for. You may find they make your life easier too. You may find your world widened. But everyone suffers from the culture of silence and exclusion.

Epilepsy awareness month!

November is epilepsy awareness month.

I'm not so big on awarenessitis, but seeing as no one I know really knows squat about seizures, I'm going to try a few things.

For some background, I've got partial complex, absence, and occasionally generalized motor seizures. Primarily the partials live in my right temporal lobe, & they're classified as medically refractory.

I've been on a number of medications, I'm not a candidate for cortical resection, and VNS is something that I'd like to explore, maybe, but I'm actually pretty happy with what I take now.

So, what I am doing for Epilepsy Month is:

a) Posting something at least vaguely related every day. It may be something I wrote after having a bad day or misunderstandings, it may be 101 info, it may be a "ha ha, listen to this ridiculous thing I did postictally! Epilepsy is serious, but I don't have to be" kind of thing.

b) Tweeting at least one fact-thing a day (I have way more non neurodiversity type followers than readers).


c) making 101-110 level fliers and handing them out. Everywhere. ESPECIALLY places where I interact with people.

But I need your, yes your, help! I'm at the point where I don't remember what's 101 info and what's eyeballs-glazing-over technical. Or what questions people have. So leave 'em in the comments! Please? Otherwise I'm going to end up with a month of BAAAAAAAAAAAAAAAWWWWWWWWWW PEOPLE ARE WEIRD ABOUT EPILEPSY! posts and really awful fliers. That'd be tragic, right?

Monday, November 1, 2010

Postictal Stream of Consciousness

**I wrote this when I woke up with a BAAAD seizure hangover. The thought process isn't quite so languagey, but this is how it translates to words. The swearing is about accurate.*

Ohmigod, what is that sound? So loud, it hurts.

Oh. It's the cat purring.

Go 'way, blankets. Scratchy. Someone turn off the sun. My eyes, I'm gunna claw them outta my head.

Shitfuck. Moved. Ow to the 10th power. Head wants to split open. Brain too big, trying to expand, leaking outta my ears. S'wrong with my arm? Tingles. Huh.

So tiiiiiiired. Did I walk 'round the state in my sleep? No, sleepytired, drugged tired not exertion tired.

Why can't I talk? Damnandahalf. Phone ringing. "hng?" Gibberish comes through. "eh. feh." Click.

Water. Signing it makes it come, right? No? My hands swear again. Sleep? More sleep? Please? No. Have work.

What happened? S'11 AM. Think. Brain hurts. Big black memory hole. What'd I do yesterday? What's today? Oh. I always do the same thing yesterday.

Cast about through the cottonhead for details. Hadda coffee. Ok, 24 hours ago. Need more. Took a bus, OK 21 hours ago. Ummmm ate...ice cream? 19 hours ago. Changed shirts....16 hours ago, Anything else? No? Just a headache? Just fatigue like climbing out of an ocean of tranquilizers?

Shower. Coffee. Can talk now. Dunwanna. Lurch around, foggy. Maybe ok tomorrow, maybe not.

Fuck seizures.

I'm on your kid's side too

No, really, I am. That's why I do what I do. The harsh reality is that your kid is going to grow up to be more like me than like you, no matter what you do to change that.

There are a few ways of dealing with this. One is to ignore it & to devalue what we do with any or all of the tactics out of Derailing For Dummies. One is to insist that your child will be like you through some cure. When this inevitably doesn't happen, the legacy of failure will haunt your child forever. Or, you can accept this truth & work with autistic advocates.

Our idea of the future we want for your kids-and for ours, and for ourselves- isn't what you seem to think. I'm all for helping your child's sensory issues, helping him develop job skills, giving her an easily recognized mode of communication. None of this things seeks to change who we fundamentally are.

What I fight for is a world where your child is seen as whole as she is, not as a mistake or sick or broken. I am fighting for a world where the tragedy model of autism is a think of the past, where inflammatory terms such as "autism tsunami" are seen in the same light as racial slurs. I'm fighting for a world where people are accepted and expected to be the best them they can be, instead of pruned into a false normalcy.

That is what I want for your child. THat is what I want for all people. So yes, I am on your child's side. For his sake, I hope you are too.

Inaugural Post: Autistics Speak Day

I believe AEIOU had the best of intentions. I really do.

The road to hell, however, is paved with said good intentions. Good intentions are behind many, if not most, efforts "on behalf of" a group that's frequently othered. Autistics in many way are the ultimate other--our nonverbal cues are different, our use of language is often different, our sensory processing is different and often inconsistent, we look like everyone else and yet are so fundamentally NOT that many of us are pretty squarely in the uncanny valley. People just don't know what to think of us, but they don't see us as 'same' enough to just ask us.

As an autistic, I implore you: Ask us what we want. Ask us what we need. Ask us what it is to be us. I can't answer "what's it like to be autistic", because I have been nothing else, but I can tell you what I am experiencing. I can tell you that I cannot tell the difference between pain and nausea consistently, I can tell you that I discovered dizziness recently and it fills me with as much joy as flying, I can tell you what my eyes see when I look where you're looking, I can tell you what your words mean to me.

I can tell you what it is to be constantly regarded as broken. I can tell you what general society does to reinforce this. I can tell you what it feels like to be assumed incompetent in areas where I am brilliant, and I can tell you what it feels like to be assumed brilliant in areas in which I am completely incompetent. I can tell you what your assumptions do to me. I may not get the hidden meanings you are intending, but I can tell you what hidden messages you reveal.

I can tell you what it means when I stare at the lights. I can tell you what it means when I jump up and down. I can tell you what that squeal meant. I can tell you why I sat down in the middle of the street. I can tell you what my behavior means. I can tell you that all that behavior, it's communication of some kind. It all has meaning.

And I can tell you absolutely that my communication issues are not just a failure on my side. Communication is a process in which people both send and receive messages. I send messages. I send a lot of messages. They may not all be in your language of saying one thing and meaning something else as indicated by body language and tone of voice, but I send messages. Even when I'm so postictal I do not remember where I am or how I got there, I am sending messages and trying to receive yours. Even when I am so fried that words just aren't happening, there are messages.

The message that the communication shutdown and similar initiatives gives me is one of profound misunderstanding of what it is to be in my brain and brains like mine. Initiatives like that say to me that they believe the communication issue is all my problem. But it isn't. Not speaking isn't the same as not listening. Not speaking isn't the same as not communicating.

If you really want to know what it is to be autistic, don't take a break from Farmville. No one even cares about Farmville. Ask an autistic specific questions about what it is to be us. Spend a day having everything you say challenged because you aren't the right kind of...something to matter. Spend a day experiencing outside of the box.

Instead of shutting off communication, open up the lines with an autistic. Receive our messages instead of assuming. That's way more for autistics than a facebook charity app ever could be.