I have a standing agreement with pretty much everyone who knows me: when I have a seizure, they won't call an ambulance unless:
And so, as per the agreement, last Wednesday an ambulance was called after I'd had my third seizure in a row. I don't remember anything between going to the bathroom (where I had my first seizure and broke my glasses) and the arrival of the ambulance, though I'm told that I communicated in nods and blinks and grunts. So maybe people see what they want to see, and maybe I actually was aware enough to react to them. Who shall say?
In any case, by the time the ambulance rolled around after the third seizure, I was "drifting up", as I like to call it. It seems they had some trouble finding us, and then also, it took the people who were with me at least five minutes to decide that yes, this is a time to call 112. That last part is my fault. I have indoctrinated everyone into believing that if they make the call prematurely, I will hate them forever after. This is not because I actually will hate them, but because I like to avoid unnecessary contact with EMS at any price.
Lo and behold, once the ambulance arrived, my prejudice against EMS was once more reinforced. I was confronted with an EMT who got angry at me, first because spasticity (heightened by the seizure) made it difficult to lift me onto the stretcher and keep me there, then because I wasn't conforming to his cookie-cutter image of what the post-ictal phase of a tonic-clonic seizure should look like (comment to bystanders: "I don't think this is really epilepsy. I've never seen anyone with this much muscle tone right after a seizure"), and then because my wheelchair had just keeled over into a men's toilet, and therefore wasn't squeaky clean. Far be it from him to clean the bus after hours, or even between calls.
When we got to the ER, things got better, but only marginally so. It was the usual song and dance. What kind of medication are you on? (Hand them the current list. Watch their eyes go wide.) Have you been taking these as you're supposed to? (Yes, but I know you won't really believe me until the blood results come back.) How exactly did you fall? (I'm an epileptic; how should I know?) Did you hurt your head? (Not really.) Are you sure? (Yes, but go ahead, do a CT if that makes you feel better. It'll only be the sixth one this year.) OK then. I'm going to go talk to my supervisor, but I really think we should keep you here for observation for a while. Just to be sure. (Sigh. Another sorcerer-apprentice covering their behind.)
Don't get me wrong: I understand what's going on here. I have a serious problem, and someone should really be doing something about that. That's what these sorcerer-apprentices, as I call them, are privately thinking. Only, they can't decide whether to blame me, an incompetent hack of a neurologist somewhere, or maybe a little bit of both. The truth is, many people have tried many different things, and it seems I always end up with the same result: ten to twenty t/c's a year. Which is better than the forty a month I had in February and March of 2013. That's my new benchmark now. As long as we aren't heading back in that direction, I'm pretty happy. So why aren't they?
Because they are doctors. They're trained to heal. Not to watch a train wreck do anything an everything she can in order to make something of her life against all odds. And that is exactly why I prefer to stay away from them as much as possible. I figure if we don't run into each other, we'll both be happier.
But I ran into a stranger on the internet yesterday, who said something that stung. It stung so much that I immediately felt compelled to send the following e-mail to most of my friends:
Rationally speaking, I know that this is by far the best thing I could have done to make dealing with my epilepsy easier for the people around me (friends, colleagues, teachers at university, etc.). However, for me it creates so many extra hurdles. That much more time lost. That many more EMT's who don't get me, and therefore decide I am a faker. That many more sorcerer-apprentices who at once don't know how to really help me, and are afraid to let me go. That many more attending neurologists to whom I have to explain the interaction between spasticity and seizure activity.
Life with epilepsy sucks.
- I'm obviously and severely hurt due to the fall
- My seizure has been lasting more than five minutes (never had one of those)
- I'm having them in multiples
And so, as per the agreement, last Wednesday an ambulance was called after I'd had my third seizure in a row. I don't remember anything between going to the bathroom (where I had my first seizure and broke my glasses) and the arrival of the ambulance, though I'm told that I communicated in nods and blinks and grunts. So maybe people see what they want to see, and maybe I actually was aware enough to react to them. Who shall say?
In any case, by the time the ambulance rolled around after the third seizure, I was "drifting up", as I like to call it. It seems they had some trouble finding us, and then also, it took the people who were with me at least five minutes to decide that yes, this is a time to call 112. That last part is my fault. I have indoctrinated everyone into believing that if they make the call prematurely, I will hate them forever after. This is not because I actually will hate them, but because I like to avoid unnecessary contact with EMS at any price.
Lo and behold, once the ambulance arrived, my prejudice against EMS was once more reinforced. I was confronted with an EMT who got angry at me, first because spasticity (heightened by the seizure) made it difficult to lift me onto the stretcher and keep me there, then because I wasn't conforming to his cookie-cutter image of what the post-ictal phase of a tonic-clonic seizure should look like (comment to bystanders: "I don't think this is really epilepsy. I've never seen anyone with this much muscle tone right after a seizure"), and then because my wheelchair had just keeled over into a men's toilet, and therefore wasn't squeaky clean. Far be it from him to clean the bus after hours, or even between calls.
When we got to the ER, things got better, but only marginally so. It was the usual song and dance. What kind of medication are you on? (Hand them the current list. Watch their eyes go wide.) Have you been taking these as you're supposed to? (Yes, but I know you won't really believe me until the blood results come back.) How exactly did you fall? (I'm an epileptic; how should I know?) Did you hurt your head? (Not really.) Are you sure? (Yes, but go ahead, do a CT if that makes you feel better. It'll only be the sixth one this year.) OK then. I'm going to go talk to my supervisor, but I really think we should keep you here for observation for a while. Just to be sure. (Sigh. Another sorcerer-apprentice covering their behind.)
Don't get me wrong: I understand what's going on here. I have a serious problem, and someone should really be doing something about that. That's what these sorcerer-apprentices, as I call them, are privately thinking. Only, they can't decide whether to blame me, an incompetent hack of a neurologist somewhere, or maybe a little bit of both. The truth is, many people have tried many different things, and it seems I always end up with the same result: ten to twenty t/c's a year. Which is better than the forty a month I had in February and March of 2013. That's my new benchmark now. As long as we aren't heading back in that direction, I'm pretty happy. So why aren't they?
Because they are doctors. They're trained to heal. Not to watch a train wreck do anything an everything she can in order to make something of her life against all odds. And that is exactly why I prefer to stay away from them as much as possible. I figure if we don't run into each other, we'll both be happier.
But I ran into a stranger on the internet yesterday, who said something that stung. It stung so much that I immediately felt compelled to send the following e-mail to most of my friends:
Hi,
Someone (the messenger doesn't really matter in this case) slapped me on the proverbial wrist yesterday. I've been told that it is unfair and manipulative to expect other people not to call an ambulance when I've had a seizure. Everybody knows what my preference is in this instance: I avoid EMS like the plague, and I'm convinced they aren't always necessary. However, fundamentally, this particular messenger wasn't wrong.
It's by demanding the absence of EMS, outside a very specific set of circumstances, that I create situations in which compassionate bystanders such as yourself have no choice but to "take care of me". Responsibility that really belongs somewhere else is foisted upon you. I can say a thousand times that this bugs me (which is true), but me saying it won't change anything for you.
So I hereby give you my permission to call an ambulance every time I have a seizure. I won't hate you for this. I may be angry at the universe, or angry at my own wildly imperfect brain. But not at the people who are trying to help me.
Thank you for being here for me.
Rationally speaking, I know that this is by far the best thing I could have done to make dealing with my epilepsy easier for the people around me (friends, colleagues, teachers at university, etc.). However, for me it creates so many extra hurdles. That much more time lost. That many more EMT's who don't get me, and therefore decide I am a faker. That many more sorcerer-apprentices who at once don't know how to really help me, and are afraid to let me go. That many more attending neurologists to whom I have to explain the interaction between spasticity and seizure activity.
Life with epilepsy sucks.