dontgetflashed-blog

[dontgetflashed-blog]

I am sick of my wife getting flashed.

I’ve had enough.

I’ll undeniably regret this post a couple years down the line.

Right now? I don’t care. I need help.

About a year ago, I created a blog called “Media Warning Labels” for an idea my wife and I had about creating a database providing photosensitivity ratings for popular media. Then, all this other "life stuff” came up that provided convenient excuses to put it off. We daydreamed where this could go but never put anything to action. We were figuring it out. We needed to figure it out so we did it right.

Then, I saw my wife have a seizure.

We don’t know what caused it. It was one of those perfect storms of maybe she forgot her meds in the morning but she was also tired and got a stressful new job and what are her hormone levels at and we were driving on the freeway at night with a bunch of incoming headlights but it’s been two years since her last seizure what went wrong that will probably never be explained. She came out of it okay, and she said I took care of her very well. We’ve been together for over 5 years, and she never seized around me. She said it was because I made her feel relaxed. I kept the seizures away.

Did this mean I’m not her anti-seizure hero anymore?

I felt so helpless. Afterwards, I felt guilty for needing to process it. This isn’t about me. I don’t have epilepsy. I’m not the one who had a seizure. I should be taking care of her. Instead, she recovered in a few days, and then she helped me reconcile my feelings until I got to a place where I could stop fixating on the exact floorboard where she fell. I made this blog. I put together a stronger timeline for how Don’t Get Flashed! will grow as a movement and as a community. I started talking to a lawyer about maybe becoming a legal entity in addition to a community.

This leads me to today. My wife’s sleeping because she’s sick with a pretty bad cold, so I’m alone in the living room alternating between Tumblr, Facebook, and Twitter when I see a post from the Epilepsy Foundation about photosensitive epilepsy. It’s totally harmless, just a little lead into clicking to their page for tips on living with photosensitivity.

But I snapped.

The advice for watching films boiled down to “Wanna watch a movie? Phone a friend or ask the audience!” and it pissed me off. We’ve asked friends for their opinion on the flashiness of movies, and they were so wrong. This was the best that the largest resource on epilepsy could come up with because the education and resources for photosensitivity are so few and far between. What about for someone new to photosensitivity? For a parent who’s child just got diagnosed with photosensitivity?

This isn’t new. My wife was just like, “yup, this is why I don’t get angry very easy” when I told her about my experience. She was diagnosed at 13, so she got to deal with this frustration while also dealing with puberty and high school. So why am I just sitting on my hands, dawdling and feeling confident that this will get taken care of “eventually,” when I can get started on it now?

tl;dr,

If you have photosensitivity that is triggered by sequences in film, television, music videos, or other various media, please submit an ask, send me a message, or reblog/reply to this post with details on your trigger.

Don’t Get Flashed! will provide metrics for the frequency and duration of various photostimuli in popular media. The primary focus is on films but will include popular music videos as well. There are no plans for television shows at this time, and Don’t Get Flashed! will never provide metrics for video games.

I’m using my wife’s severe photosensitivity as the basis for the database, but I want this to be as comprehensive as possible. This doesn’t have to be limited to epilepsy. I’m still learning about other medical conditions that have photosensitivity, like migraines, and you can help educate me to be a resource for you, too.

I’m starting with kid’s movies because photosensitivity tends to occur more frequently in children. I’m not going to do any superhero, action, or animated movies that are blatantly photosensitive-unfriendly (looking at you, Incredibles 2 and Spider-Verse) even if those tags are more popular on tumblr. I want to focus on the movies that somebody with photosensitivity might try watching because they seem safe. I can take movie requests, but I make no guarantee that I will get to them in the order the requests are submitted.

Please reblog to spread the word. I have so many plans for this - websites and apps and social media and conversations - but it starts here where I know there’s already a community of people who care about others’ well-being and health.

As a side note, my wife was formally diagnosed with photosensitivity and mild audiosensitivity, and she has been trained as an epilepsy-specific counselor by the Epilepsy Foundation. She has access to this blog and is very open as a resource for questions or non-medical advice.

If we can be a resource to help you navigate life a little happier, then we’ll consider ourselves successful.

Thank you,

KB