5:54pm November 9, 2013

➸ D.C. woman’s number of 911 calls prompt city to request that she be given a guardian - The Washington Post

This does sound like a lot of calls, but maybe somebody could do a better job of figuring out what the problem is without taking rights away from her.

Also, I loved the way they tried to blame her for the city’s inadequate emergency services coverage:

Her home in the Trinidad area is problematic, officials have testified, because the neighborhood already has some of the highest call volumes in the city.

The closest firehouse to Rigsby is Engine Company 10, which is nicknamed the “House of Pain” because of the constant grind.

For years, there has been concern that if crews are tending to Rigsby, the next 911 caller with an emergency might get a paramedic from a farther distance, said Miramontes, the medical director.

“There will come a time when one of these [frequent 911 callers] will call and they will cost someone else their life,” said Jim Dunford, the emergency medical director for San Diego and a known expert on frequent 911 callers.

What weirds me out is the fact that they refer to her falls as “placing herself in danger”. And the fact that it hasn’t been validated as seizures or narcolepsy apparently means there’s no reason for it? As if there aren’t hundreds of other medical conditions besides those things that can cause a person to pass out? (And as if seizures and narcolepsy are so easy to confirm?) I get the sense that because she has psychiatric diagnoses people are ignoring the fact that she’s passing out all the time. Which is worrisome.

When I was in a residential facility for teens with mental health issues, I started falling all the time. Unlike her, it wasn’t like fainting. I had no warning. I’d just lose consciousness and hit the ground so fast that my father said it was like cutting the strings on a puppet and watching it fall faster than gravity ought to allow. I would wake up either just before hitting the floor, or shortly after, hurting all over, with bruises and scrapes all over my body.

The facility I was in continued to claim that this was probably due to ‘anxiety’ or a number of other psychiatric explanations. That’s what happens when you’re under the care of psychiatry. But it turned out, after seeking medical help from a real doctor, that it was an exacerbation of my already-existing and much milder seizure condition. Normally I only have complex-partial seizures which don’t involve falling at all. These seizures, on the other hand, were atonic seizures – where you lose all muscle tone in your body at once. This is why I hit the ground much harder and faster than a person does when they pass out. (Generally when you pass out your muscles still have roughly their normal tone.) Most people don’t know about this kind of seizure. Anyway, the reason I was having them was because the psychiatric medications I was on were lowering my seizure threshold and making my seizures much worse than they normally would be. Switching to another medication (and a less toxic dose – I was on about twice the toxic level of one of the medications they’d given me) solved the problem entirely.

I worry that she has a real medical problem that nobody is paying attention to because she has psychiatric problems. Narcolepsy and epilepsy are only two possible reasons, and a person without medical education could easily latch onto them as descriptions of what happened whether or not they are what is actually happening. People do that all the time. It’s also possible that a doctor suggested them and they’re literally the only explanations she’s ever heard. She should not be blamed for that.

Epilepsy is not simple to diagnose, it does not always show up on an EEG, especially if the seizure is deep in the brain or is not occurring right at the time that it’s being measured. (Some epileptic people have abnormal EEGs all the time whether or not they’re having seizures, but plenty of epileptic people don’t.) And not all seizures are epileptic in nature, just to confuse the issue.

But there are literally hundreds of conditions that can cause a person to faint, otherwise lose consciousness, or collapse. It’s medical neglect not to be looking into every single one of those conditions until they find a good explanation for what’s happening. If she did not have psychiatric conditions, it’s almost certain that someone would be taking this seriously. Because believe it or not, it’s much rarer for a psychiatric condition to cause loss of consciousness (or any other medical symptom) than it is for a physical condition to cause loss of consciousness (or any other medical symptom). I’m now seriously worried about her well-being given that she seems to have an undiagnosed medical condition that could be serious. (Or it could just be that she has an overactive… whatever that nerve is that causes fainting in a lot of people. That’s relatively common, and you’d think people would look into that.)

I also find it disturbing that some of what she’s being blamed for is the fact that she collapses in public and other people call 911. A person without a psychiatric condition would not be blamed for collapsing in public. This is just… horrible.

I wish she had access to a mental health advocacy organization as well as a chronic illness advocacy organization. I mean the real kind, by and for people with these problems, ones that actually get things done. Not things designed for families or professionals that see us as the problem and don’t have our best interests at heart. I’m terrified of what medical problems she might have, that might even be easily fixable, that are not being looked into. Looking into the cause of the medical problems would be the best answer. Not blaming her for calling 911 when she falls or passes out.

Basically, there’s three really big categories of stuff that could be going on, that I can think of, even as a person who is not a medical professional at all:

1. Something causing fainting or similar loss of consciousness.

2. Something causing seizures.

3. Something affecting muscles.

Or some combination.

And I repeat, there are hundreds of diseases that can do that. Physical diseases. You do not claim to have ruled out everything just because you think you’ve ruled out narcolepsy and epilepsy. You do not blame someone with no medical background for naming narcolepsy or epilepsy as possibilities for what is going on, or even for believing that is what is going on (whether or not it’s been validated). You do not use someone’s mental health history as a way of invalidating their physical problems (people with real or presumed mental health problems or developmental disabilities are two of the most likely groups of disabled people to die because of physical health problems that have gone unrecognized because of prejudice against us and an assumption that everything is either all in our heads or made up). This is all completely the wrong way to go about it and it's horrible and dangerous to the woman involved.