All That Flickers (plus a cool invention!)

I've been asked recently what exactly a "flickering" light is. I opened my mouth to respond and spit out a bunch of bullshit. Because I actually don't really know.
 
We've all heard of people having seizures at raves, or while playing video games, or while watching that one Pokemon episode, but what exactly differentiates a toggling light from a seizure-inducing flicker?

To tackle this, I had to do some research. Obviously a hands-on approach was out of the question, so I had to rely on my trusty friend Google.

The general consensus seems to be that flicker rates between 5-70 hz (flickers per second) are dangerous for photosensitive epileptics, with most symptoms occurring at rates between 15 and 70 hz. So what does this mean with relation to trigger-causing stimuli in the real world?


As I said, I did not do any hands-on research myself, but I can relay what has happened to me in the past. The things that have caused photo-sensitive-related seizures in the past include:

• Lara Croft video game
• Sunlight through palm trees while driving (I sound SO California right now)
• Flashbulbs from a red carpet event (that was on TV, otherwise I could have given Jennifer Lawrence a run for her money))
• Neon signs at night time in Las Vegas
• Those random strobe lights that people hold at clubs and parties- there seriously needs to be a bar that bans these

Most video games have warnings on them about the potential for seizures in photosensitive epileptics. Of course, I didn't know that I had this disorder at the time I played Laura Croft so it did me no good. Nor do I know if there even was such warning on that box.

I have a hard time determining what the flicker rate was when I was driving. I suppose I could estimate my speed, and the distance between the trees and all that, but I'm far too lazy. The TV incident too is pretty hard to measure, as are lights in Las Vegas.

However, I have done some research into strobe lights. Most available strobe lights (wrist bands, batons, spot lights, etc) pulse at between 10 and 12 hz. While relatively low, this is absolutely within the "danger zone". The sensitivity increases if the strobes are used in the dark (usually), if there are multiple ones (causing a potentially higher overall flicker rate), if the person is tired, stressed, or taking substances.

So please friends, consider the flicker rate of your toys around us.

Things that haven't given me a seizure (probably due to medicinal increases) but annoy the heck out of me and sometimes provoke panic attacks (which can sometimes be equally debilitating) include:

• Fire alarms (usually around 1hz)
• Crappy projections 
• Ambulances (usually around 5 hz)
• Florescent bulbs that are about to die (their death follows soon after I encounter them)
• Donald Trump

So, what does this tell us? What can we do?

I actually have an idea this time!

Make glasses (sort of like Google glasses) that detect frequency. The glasses would be tailored to the individual and their seizure threshold. If the glasses detect a frequency greater than the threshold, they go black, creating sunglasses for the wearer. Of course this might be inconvenient (to say the least) if you're walking or driving, but hey, I just thought of this right now. Remember how long we had to wait between the Nokia the iPhone?

Now I just need some investors...

Peanuts and Fire Alarms

I want to start this post by saying I don't have the answers to the questions I pose below. I merely want to explore a concept that has been on my mind of late.

In the wake of the anti-vaccine movement (don't worry this blog won't be about that), other concerns about public safety have surfaced. Topics that most interest me deal with public schools.

As a child, I pretty much ate the same thing every day at school: goldfish crackers, applesauce, a fruit roll up, and the ever-popular pb&j sandwich. I clearly remember a friend of mine saying she hated peanut butter and jelly sandwiches. Appalled, I inquired as to why. Well, turns out she was allergic to peanuts. But she knew this. She was probably around seven, and knew not to touch peanuts. She also had an epi-pen that she knew how to use. Bottom line, she was prepared.

By middle school, there seemed to be some weird rules about taking medication to school. Inhalers and epi-pens had to be kept with the school nurse. Clearly, this is problematic. It's like keeping all fire extinguishers at the fire department. The, perhaps not-so-subtle, reasoning behind all this was that school were afraid of being sued if a student misused their medication. This fear of legal repercussion slowly morphed into more and more rules. Kids can't keep their medications with them, they can't eat peanuts at school, and, in some cases, they aren't allowed to run at recess (seriously).

So by now you're wondering: what the heck does this have to do with anything? Well, here ya go. My question is this: why is it that some disabilities overwhelm the spotlight, while others get no attention at all?

As a youngster with epilepsy, I knew when I had to leave a classroom. If there was a video with flashing lights, if some idiot had a strobe light, or if (and I still maintain this is true) the class was really boring. But never once have I heard of a warning, much less a rule, about showing such videos in class, or banning annoying strobe lights from school campuses.

And now I want to share a little story: I was at my high school one morning taking my AP Computer Science exam. Out of nowhere, the fire alarms started going off. It was "just a drill" as always, but the alarms didn't stop. After a couple minutes the sound relented, but the lights keep flashing. Because of some AP rule, we weren't allowed to leave the room. I made a comment about my condition and the supervisors covered the lights with printer paper. It didn't do anything. And I was told if I left the room, I would fail the test. So I sat there, with my head the crook of my arm, and failed anyway. When I went to the school counselor to complain, I was told I could retake the test but a) colleges would see that I took it twice, and b) I would have to pay $150. Bullshit. So I took the failing grade, got into the competitive computer science college I wanted, and now work at a software company...further solidifying my notion that AP tests are bullshit to begin with. 

Despite this, I'll tell you what I don't want to happen. I don't want to ban TVs from classrooms, just as I don't want to ban peanuts from schools. I'll exit the classroom, you won't eat the peanut butter cookies. Of course, there are extreme cases of allergy. But those are rare and can result from many different allergens.

Bottom line: why are we so up in arms about some issues and not others? Maybe it's because no one has sued over a flashing video or fire alarm? But that's a whole other issue.

Comments welcome!

Wired: The Role of Disability in a World Gone Digital

A while ago I wrote a brief blog post that discussed a brain/computer comparison. Today, I’d like to expand on that idea and talk about disability in the digital world.

Note: I might go full nerd here.

In 1967, Marshall McLuhan suggested that electric circuitry is an extension of our nervous system (The Medium is the Massage). He also suggested, in The Gutenberg Galaxy, that the next form of medium would be an extension of consciousness. He wrote this in 1962. I think it’s safe to say that this new medium has, at least partially, arrived in the form of the internet. Now, before I go all Annie Hall on everyone (remember that scene with that annoying guy talking about McLuhan?) I’ll stop writing about things that require citation.

When McLuhan wrote what he did, I suspect he was thinking metaphorically. Interestingly, this might not be the case anymore or in the near future. Electric circuitry is already literally an extension of our nervous systems in the form of advanced prosthetics that respond to brain signals.

But consciousness? I don’t think we’re quite there yet.

Let’s pretend we are. Let’s pretend we live in a world where people can upload their consciousness (lame Johnny Deep movie about that I believe) or that we live in an entirely virtual world by syncing our brains to a virtual self.

What about disability then? When we are freed from physical disability by way of virtual avatars, how will we, as a society, react to mental disability? Will it be more noticeable? Even more stigmatized? Will we, the mentally disadvantaged, (because I do consider epilepsy at least partially a mental disorder) be further singled out due to the fact that our disabilities transcend the medium into which we exist?

If we exist in a purely visually constructed world, how can we mask the complications of mental disability? I suspect we can’t. If we could, I think YouTube would have already figured out how to block assholes from posting comments. Of course I am not comparing mental disability to asshole-ness (as a writer I have full power to create new words by the way). I’m just saying that cognitive abilities, disabilities, or general asshole-ness are harder to mask in a setting that harbors physical anonymity.

When anyone can alter their appearance to anything they want, physical attraction will go out the window. It will be of less importance than personality (money might still work it’s way in there though). I for one, think this would be a great step forward. When we can’t be judged by our weight, skin color, gender, or anything else physical, the world might be a better place (with the exception of the YouTube assholes of course). But, being people, we will inevitably find ways to discriminate against each other.  

I think I’ve been asking myself the wrong question. Instead of “how do we mask it?” I need to ask, “should we mask it?”

If we abandon our physical bodies in favor of a virtual one, and then proceed to abandon our mental selves in favor of a more socially acceptable state of mind, we will all be zombies. Instead, we should stop thinking of mental disability as something negative. Just because you are unable to do something, doesn’t mean you are worth less. I know this is not news to anyone reading this, but I fear that the further we delve into physical modification, whether it be through prosthetics or digital avatars, the social attitude toward mental disability will change. Hopefully, it will be for the better. Hopefully, we can embrace differences in mental capabilities. Only then can we truly call ourselves tolerant.

And if you’re still an asshole, then you can go build your own virtual world.   

Robo-doctor

Ahh, I haven't blogged in a while but this article on IFLS got me going again. It is about new robotic techniques that allow a machine to conduct brain surgery on patients with severe epilepsy. It sounds incredibly interesting and, besides relating to epilepsy, fueled my intense obsession with human-computer interaction.

I am lucky and unlucky in my particular type of epilepsy. The seizures I have are generalized, meaning they take over my entire brain, versus localized, which affect certain regions of the brain. Localized seizures can be attributed to tumors, so surgically removing that tumor usually does the trick. With my generalized seizures, I am not a candidate for surgery, so I have no idea how I would feel if faced with the option to have a surgical procedure. Then, add to that the decision of whether you want a human surgeon or a robot to perform the procedure, which I beleive will become a legitimate option soon enough. I can't fathom having to make that decision.

Of course there are pros and cons to this technique: a robot could possibly not have the wherewithal to make an important decision is something goes wrong, but a doctor could slip or sneeze or something. But, what interests me the most is blame. What if something does go wrong when a robot operates? Whose fault is that? All too often we hear of mistakes made my "computer error." For example, that ridiculous firework display a couple years ago at mission bay. We have a tendency to blame computers, it's easy and no one gets in trouble. And this may very well be the right thing to do. As a recovering computer science major, I know that no matter what you do, sometimes computers do crazy things. But what about in a case as serious as brain surgery?

In America, I think the question really comes down to, who will be sued? Because that's what we do. So, do we blame the doctor (I assume someone is monitoring the process)? the manufacturer of the hardware? the programmers? the hospital? the patient? Or will we blame the "robot" as if it is an entity capable of conscious error? As in "the robot screwed up" or "the robot miscalculated".

I have a feeling the robot will burden part of the blame. But what about when robots evolve even more? When they do have the ability to make an informed decision, factoring in some type of "emotional" element? When they have the ability to defend themselves in court? This brings me to one of my favorite topics: robot rights. If we, by blaming "computer error", admit that a robot is capable of its own error, we admit that it functions independently of humans, that it is, in a sense, alive. Plenty of Hollywood movies have proposed the theory of a robotic uprising. In almost all cases, the intelligent robots are emotionless, violent, metallic "others"trying to colonize humans. Sound familiar? It seems we harbor an intense fear that robots will do to humans what humans have been doing to each other forever. I feel like I'm going to enter a wormhole here so I'll stop for now.

But back to the original topic. Would you let a robot perform brain surgery on you? Or is this just the first step to Hollywood human domination? Dun dun! (<--dramatic sound that I don't know how to communicate in a blog)

The mind-body dualism: A Cartesian approach to epilepsy

Warning: this may be boring to some viewers.

Epilepsy is frustrating in that it both a mental and physical disability, yet at the same time, it is neither. Consequently, it carries with it the social stigma associated with mental disorders and the limitations of a physical one. A physical episode is scary to witness and often mimicked. The perceived "mental" manifestations (slurred speech,  confusion, and absence) are often mistaken for stupidity or intoxication. But it is unique in that, for me at least, it manifests in episodes. You wouldn't know from looking at me that I have epilepsy. Yet I am gripped, seized, by the physical manifestation of the disorder and consequently cannot drive. Accompanying that is the mental confusion, the occasional bout of total incomprehension, and mental medicinal side effects. So is this disorder physical or mental? One could argue that everything is mental. Everything is compiled in the brain for analyzation and reaction. But there is still a distinct social division between the mental and physical. A broken limb is treated topically, soothed with flowers and get-well cards. A disorganized, I hesitate to say broken, mind is treated with expensive medications, compounded by ostracism. This may sound a little melodramatic, but I believe it is true. So where does this complex, poorly-understood disorder belong? In Grey's Anatomy or the DSM?

You could argue that all physical ailments are mental; that a broken limb is the result of the mind's inability to produce enough substance to strengthen the bone and thus resist breakage. You could also argue that all mental illnesses are solely the result of physical chemical imbalances. But I find that, true to human nature, we want to categorize disabilities.

I choose to discard this Cartesian approach to mind-body dualism and instead argue for a more fluid definition. The mind is not separate from the body, the body is not disconnected from the mind. It follows that the two need not be semantically differentiated; the body is the mind and the mind is the body. We could argue the specifics of this stance forever, but for me, this is the truth. My neurological disorder affects my physical being, and my physical relationship with the external world affects my neurological state.

We could, of course, add a spiritual element to this. In the past, and even now, epileptic fits have been attributed to everything from demonic possession to manifestations of divine personhood. As a not-so-spiritual person, I hesitate to expand on this, but I beleive it carries a degree of merit. There is something about missing time, memory loss, and complete loss of physical control that makes me feel like something else inhabits my body for a while. I know, scientifically, what is happening. And I'm sure we've all had moments where we "weren't ourself". Feeling like someone or something else is driving your body is probably the hardest thing to explain about epilepsy, but it's there. And it's the most frustrating, kinda cool, thing ever. Maybe I'll just change my name to John Malkovich.

Seizures: Harbingers or Heros?

A thought has been bouncing around my head for quite some time. It spawned when I spilled water on my laptop. My computer instantly shut down. Well, that's it, I thought. Of course it was finals week, and of course I didn't have recent copies of my 20+ page papers stored anywhere else.

To say the least, I freaked out. I tried every method of resurrection the internet had to offer. 48 hours later, I succeeded. Turns out, my computer shut down instantly for a reason. It detected the water and saved itself from further damage by pulling its own plug.

My "insight" came that night. (By the way, I am not a doctor so this is purely speculation). What if my seizures were acting like my laptop?

The computer/brain analogy has always fascinated me and this was not the first time I considered the relationship between my episodes and a circuit board. But this was the first time I considered it a positive thing. Could it be that my brain detected some external, or internal, threat and reacted with a seizure? Could seizures provide be some long-lost form of defense mechanism?

I reacted this particular way because no doctor knows what causes my seizures. I do not have a tumor, nor other illnesses that accompany my disorder. The seizures consume my entire brain and are thus not related to any specific regional abnormality. My brain just goes haywire.

So, is it possible that my brain senses a threat, actual or perceived, and responds with a tonic clonic episode? Could it be like a fever, dangerous but necessary to kill off an infection? This is not to say that what is happening isn't a malfunction. But it's nice to think of my epilepsy as a helper, an unsung hero, than as an indicator of illness.