Epilepsy

It’s Personal, and It’s Us

I should be doing my yoga right now, but I’m too busy crying. I figure that demonstrates more than a modicum of restraint, because what I’d like to be doing is vomiting while I stamp my feet. Donald Trump won. Hate won. Fear won. Selfishness won. Greed won. Racism won. Misogyny won. Homophobia won. Xenophobia won. Zealousness won. The motherfucking KKK won. The DNC won, in its refusal to acknowledge that no matter how qualified, no matter how many good reasons there were to support her, Hillary Clinton was not the candidate to run in a climate of fear and hatred.

You know who lost? Me and my loved ones. No matter what platitudes are mouthed, this was and is personal. November is Epilepsy Awareness month. I usually post one blog post about it, and post several facts and awareness tidbits throughout the month on my personal Facebook feed. I’ll stop now. It doesn’t matter anymore. Awareness doesn’t mean shit when the country just voted for my daughter to lose her healthcare in two and a half years, when she turns 18. We can’t afford her meds out of pocket, let alone hospitalizations, testing, doctor visits. I have friends who voted for this. Were they unable to separate the facts of insurance premiums rising because of the greed of the insurance companies from the ACA? Prayers are lovely, and many believe they are powerful, but they don’t replace rescue meds when your kid is turning blue in front of you. I don’t know, but don’t anyone dare tell me, my daughter, my Latino family, this wasn’t personal.

Maybe you’re lucky enough not to have to think about the ACA because no one in your family has preexisting conditions. That’s wonderful for you, I’m not so lucky. Maybe you/your loved ones weren’t worried about the ACA because you/your loved ones have Medicaid. How nice for you, I can only hope Medicaid and Medicare aren’t targeted right after the ACA, but I wouldn’t hold my breath.

Don’t tell me you have respect for women, believe in equal rights, when we’ve just supported a man who values women only for their secondary sex characteristics; when we just green lighted sexual assault.

Don’t tell me you care about education, when we supported a man who loves the poorly educated.

Don’t cry about your child being bullied, when we just voted into office the poster boy for bullies.

Don’t tell me you care about the differently abled, when we just elected a man who sees nothing wrong with mocking those who are different, and of course, the aforementioned gleeful plans to repeal the ACA.

Don’t tell me how this was a pushback against the elite, when Donald Trump personifies the elite.

Don’t tell me about hope for tomorrow, when we just chose the ignorance of the past.

Most of all, don’t talk about them. It was the death grip of us vs them mentality that brought us here. And no, I don’t mean only those who are afraid of people of color, or women, or the LGBTQ community. I include those who refused to see this as a real possibility and consequence, those who dug into “us” with unrelenting toothless trailer trash jokes. America is a big country; when we talk about different lifestyles and acceptance that cannot just be code for left leaning ideals, it is real.

I saw a comment earlier, bemoaning this result, listing all the reasons it makes no sense and is frightening that Trump has been elected. Included in that list? Melania Trump’s nudity. Yeah, this is why we have all lost, and lost before the votes were tallied. Nudity? Not important.

This is us. Greedy, fearful, easily distracted by a thin patina of gold and flashing lights.

I am in mourning.

Happy Anniversary: Carpe Diem

Mrs Fringe is 2 years old. I could write a fun post, a retrospective of the highlights, discuss how very much this blog and all of my followers mean to me, but in true fractured Fringeland style, I’m not going to do any of those today. No silliness, no photos. Instead, I’m writing a PSA post, asking you all to please read and remember.

I’ve written epilepsy awareness posts before, I usually post one in November, but I’m writing another one today.

On the train this morning I got a phone call from Man Child telling me he was on his way to the ER, and when I arrived at the beach it was raining. Ok, life.

After the rain stopped and the clouds moved off, someone several towels down had a tonic clonic seizure. Tonic clinics are what used to be called grand mal seizures. I went over, as did several other people. Really nice to see so many willing to get involved and see if they could help, lifeguards were hailed, police were flagged down, 911 was called.

I was umm, happy? I don’t think happy is the right word, to see the person was on their side, and they were on a towel on the sand, away from the water, nothing to be injured on. This is probably the safest scenario for a seizure when someone is alone and outside.

But I was quickly upset, and I’m still upset now.

The problem. One woman pushed through, trying to turn the person onto their back, saying they needed to be held down. NO. There is no reason to restrain someone having a seizure, and doing so risks injuring them. No less than two people stepped forward ready to grab the jaw and force the mouth open, yelling that they were going to choke on their tongue. NO. NEVER, EVER PUT ANYTHING IN THE MOUTH OF SOMEONE HAVING A SEIZURE. It is physically impossible for someone to choke on their tongue. It is, however, possible for the tongue to block the airway, which is why lying on their side is the safest position for someone having a seizure. One woman tried to hold their head, saying she was going to put her finger in their mouth to swipe away the saliva. NO. Nothing in the mouth includes fingers, it’s a good way to a) have your finger injured, possibly bitten off, b) break the jaw of the person having the seizure, c) trying to force anything into the mouth when someone is seizing can result in chipping their teeth.

Yes, I spoke up.

But, why, oh why, is there not more seizure awareness? Seizures aren’t rare. 1 in 100 people can expect to have a seizure in their lifetime. Anyone can have a seizure. Epilepsy is generally defined as 2 or more unprovoked seizures. Epilepsy can develop in any person at any time. It is the fourth most common neurological disorder.

So how come, as the person was coming out of the seizure, the only question asked was if they had taken anything or been drinking? These are valid, important, sensible questions. But they weren’t asked if they had epilepsy.

Most seizures are self limiting, — end on their own. Without anything else going on (injury, illness) they are usually not considered medical emergencies. But they can be. People can and do die– from SUDEP (Sudden Unexplained Death in Epilepsy), status epilepticus (prolonged seizures), and injuries sustained during seizures (head injury, drowning, etc). These events are not common, but they can and do happen.

Please. Know what to do in case someone around you has a seizure (and tonic clinics are just one of many types).

Official November Post

(as opposed to all those other November posts)

November is Epilepsy Awareness Month. You didn’t remember that from last year? Good thing I’m posting again.

Last weekend when we were up North, I was speaking with someone who used to keep horses, chickens, and goats. I know very little about horses, less about chickens, and less than nothing about goats that doesn’t involve curry recipes. Fainting goats came up. I had never heard of them, asked her about them. As she described how they stiffen and fall over, I thought to myself, sounds like a form of epilepsy, but didn’t say it out loud. I’m pretty sure any animal with a brain can have a seizure. But what do I know about farm animals? I’m not even sure I’ve ever been next to a goat, fainting or otherwise. She then said she believes the fainting is a form of seizure disorder.

Meet Bambi, the Pygmy Fainting Goat (Photo credit: pmarkham)

Well , now I was able to join the conversation. Turns out the woman used to have someone in her life who had epilepsy, and she made a statement to the effect of, well it isn’t like anyone can die from it.

Not true. People can and do die from seizures and epilepsy. Thousands of people. In countries with modern medicine and purple ribbons. There is SUDEP– sudden unexplained death in epilepsy, there are accidents related to seizures (drowning, falling, burning, choking, etc), there is status epilepticus (prolonged seizures that don’t end/resolve on their own), deaths due to treatment, deaths due to underlying disorders if the epilepsy isn’t idiopathic, and suicide related to comorbid conditions like depression.

This woman hadn’t known this information. She didn’t know epilepsy is actually a spectrum of neurological disorders, she didn’t know there are many types of seizures/ways seizures can present themselves. I also think she hadn’t understood that 30% of people with epilepsy are not “well controlled” on their medicines. In other words, they’re doing everything the doctors say to do, taking meds, trying to avoid triggers, and still have uncontrolled seizures.

This was a great opportunity to educate and promote epilepsy awareness. I did, and I think she and the other woman with her were listening. No ribbons (which I don’t think anyone pays attention to anymore anyway, 43,000 disorders and diseases sharing 12 ribbon colors–I made up 43,000–just in case you weren’t sure), no banners, no jazzy PSAs, not even any goats; just an opportunity taken.

*Some, even most, children and adults with epilepsy have seizures that are well controlled on their medication/treatment plan. That doesn’t mean epilepsy is “no big deal.” It can be a very big deal. And you should care, because anyone can have a seizure, anyone can develop epilepsy.

What medicine(s) works for one person doesn’t necessarily work for the next. Whether they work or not, they often have horrendous and lasting side effects. Some people are finding tremendous success right now with certain medical cannabis compounds/cannabinoid. I’m guessing it’s like the other meds/treatment options, it will work for some and won’t work for others. Of course, everyone who wants to have that shot of success will have to be belittled and inspected first, forced to fight their governments and maybe even move. Sigh.

EEG fragment (Photo credit: Wikipedia)

But that’s another post.

And by the way, if your dog (or your goat) has epilepsy, and you’re speaking to someone whose child has epilepsy, don’t tell them you know just what it’s like. You don’t.

Epilepsy Awareness. Epilepsy Sucks, pass it on.

Merry Epilepsy!

Mercury EEG (Photo credit: Max ☢)

It’s always somebody’s awareness day, week, or month, right? November is Epilepsy Awareness month. If you’ve noticed purple ribbons, or purple in general, showing up in icons on Facebook over the past few days, that’s why.

Seizures and epilepsy are part of my little corner of Fringeland. I believe awareness is particularly important to epilepsy, and people with epilepsy, because there’s such a long history of stigma attached, so much misinformation. There are those who still believe it’s the mark of Satan. Hell, years ago, when Flower Child was diagnosed, I received phone calls from well intentioned relatives telling me if I would just pray harder….The fact is, seizures are a misfiring in the brain, and how much of the brain gets involved and where determines the presentation of the seizure; in other words, what you see. Anyone can have a seizure. A diagnosis of epilepsy is usually made when there are two or more unprovoked seizures.

To give a short but clear idea, I’ll just say Flower Child had a favorite EEG technician long before she had a favorite teacher.

Flower Child doesn’t quite “get” the concept behind awareness, but she knows she’s got a great reason to wear purple every day, and has noticed all the purple icons popping up when looking over my shoulder. Being an excellent advocate, she’s letting everyone know. Sort of. In her mind, it’s kind of like letting people know it’s her birthday, or wishing people a Merry Christmas. She also likes to use weighty words, though their definitions get confused in her mind.

Their Purple Moment (Photo credit: Wikipedia)

So you know she makes sure to tell everyone on the elevator, and in the store (before fatigue brought her down for the day and she wasn’t telling anyone anything), “It’s Epilepsy Appreciation Month! You should wear purple!”

Lots of elderly people in my building, losing their hearing, they all assume they’re hearing her incorrectly if they did in fact hear her words clearly. One wished her a happy birthday. Several others look at me to “translate.” I do, and they do a double take, “Oh, well, umm, thanks for telling me.”

The reality is, my world is pretty small. Most of it is quite tedious. If it wasn’t, I might not feel such a drive to write fiction, and create imaginary worlds. And yet, somehow every day is an adventure.

I’ll leave you with just a few facts:

-Never ever put anything in the mouth of someone having a seizure, you risk injury to yourself and to them.

-Epilepsy is a spectrum of neurological disorders.

-70% of people with epilepsy are well controlled by medications. That means 30% aren’t.

-About 50,000 people die in the US each year from epilepsy. Yes, epilepsy. That’s more than breast cancer, more than skin cancer, more than drunk driving accidents.

-A seizure isn’t always obvious to a casual observer. Tonic clonics, or what used to be called “grand mals” are only one type of seizure.