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Saturday, February 27, 2016

Quite Possibly the Biggest WTF Moment in my Entire Epilepsy Career

Okay, it's been going on five years now since this happened, but i've recounted it (more than) a handful of times, and it seems burned vividly into my memory, so take it for what you will.

I live in a college town. While it certainly isn't a major metropolis, you'd think this might confer some general competency as far as first-responders reacting appropriately to any common medical complaint. Not so! I'd be giving these folks the benefit of the doubt, were it not that so much of their questionable conduct had been right in front of friends, coaches and family members. 

One police officer pulled his taser on me when i was waking up on the gurney and struggling (instinctively) against the belt that splinted my arms to my sides. I never would have believed it if i hadn't learned later of my friend rebuking him as she explained i wouldn't be able to understand him yet, and maybe the taser thing wasn't such a good idea. 

Others have piled on top of me well in advance of my stirring awake from a seizure. My hockey coaches were there, thankfully, once when this happened. One of them works with disabled kids and is familiar with seizures. They were able to get the cops to get off before it spiraled into an outrageous battle in which my reptilian brain fights ferociously for its life. 

I'd never heard reports of my having been combative until i moved here. There were times apparently though, i fought them for hours. I never remembered any of it. It was like my brain wasn't able to recover itself once it got stuck fighting in that state. Has anyone else experienced this? Again, it's only when someone is holding me down as i'm regaining consciousness after a seizure, otherwise i sleep for as long as the universe permits.

Anyhow, despite all this, you'd think these would have to be the most inappropriate responses to seizures i'd ever experienced. Nope! My last bit of framework here is that about two or three months prior, i'd had a seizure in the back of an ambulance. An EMT who happened to be a friend of mine and a friend of my family's got her finger smashed and broken between my foot and the rail of the gurney. I was mortified to learn of this later as i recovered in the emergency room. Enter: Dave, one of few paid employees at our local fire department.

"Just so you know, my crews will be instructed not to intervene with you until adequate law enforcement is on scene. Thanks to you, one of my EMTs is in getting X-rays right now."

Super M, we'll call her
, my five-foot-none superhero nurse swooped in and verbally drop-kicked him out the door of the room that was still spinning a little around me. I was too dazed to respond to him, but I was mortified as his words registered. I felt abhorrent. A monster. Dangerous. The new policy aspect though, i'd welcomed - perfect! I've been trying to get you guys to leave me alone for *years* now. I worked with dispatch, with the overseeing medical doctor, the police department, and let me tell you, to get any one of them to call any one of 8 or 9 adult, blood relatives I'd had in town at the time, must take an act of congress. I'd conceded to the fact they were going to show up, and they were going to transport as they saw fit, all i'd hoped for was an advocate - someone there looking out for my best interests.

Flash ahead a couple of months. I was on campus, stuck in a partial seizure. My right hand closes repeatedly as my arm jerks it up by my side time and time again. The left side of my face was tired along with the muscles starting to feel like old, worn ropes on the opposite side of my neck. I couldn't speak properly. I'd encountered a professor of mine in passing and i'd failed to reassure her concerned inquiries, so even though i probably could have made it to the hospital five or six blocks away, i understood and fully appreciated they weren't going to let me.

By the time the ambulance arrived I'd been stuck in the seizure for close to an hour. I was eager and in full agreement, yes. Let's go. Dave is the medic. Whatever. It's five blocks. Let's go. He's talking to me, "You're having a focal-motor seizure, Allison." I agree, Dave. I'm glad we got that all cleared up. He wants IV access - understandable, if not expected. I'm perplexed, though, when he posts himself up on my right side. (The one i can't stop moving.) Then, he asks me to hold still. I'm at a loss. I hold out my other arm. I try my best to gesture. 

"Hold still, Allison." Is he joking?! Then, "You're going to hurt someone again." More than once he repeats this with increasing truth as i prepare to left hook him in the face (not really, but i may have entertained a few injurious ideations). The mdidle-finger gestures in my eyes, (more likely tears, knowing me), must have betrayed me, as he breaks out the 4-point restraints.

Never mind you should never restrain a person having a seizure. Fine, whatever, if you can't see why restraining somebody in any type of seizure is a bad idea, i have little hope for you. Fucking whatever dude. Here's where you might think it couldn't possibly get any stupider in the span of five blocks to the damned hospital. Nope! Not. so. He proceeds (somehow) to place one of those restraints around my neck. Every time my face jerks, i choke myself out against it. I have a VNS device with leads attached to the vagus nerve right there (about 2" below the left carotid - you can see the 3 bumps from it in my profile picture). Damage to those leads or that nerve could be life-altering as it provides feedback for the diaphragm, the upper digestive tract, the heart and vocal cords.

At this point, i was terrified in every sense of the word. I felt acutely vulnerable. This can't be happening. Mercifully, one of our rockstar campus police officers (also an EMT), Cpl. McIntosh, had followed in a squad car and was right there as they'd opened the ambulance doors. "What is going on?!" She rescued me. 

I was too shell-shocked and dumbfounded to have pursued anything absent her insistence and subsequent intervention. Afraid of any further WTFery, or retribution, i was inclined to let it lie, despite my being angry and horrified. She set up a meeting with the fire chief. She even came with me and sat on my side of the table as we explained our grievances. 

Dave still has his job, but all of our interactions henceforth have been cordial, professional and non-traumatic. I'm forever grateful to the police corporal, who might inspire me to stand up for myself again, if need be, in the future.
Strange, though, right? Some say EMS is a calling; i think Dave should've let it go to voicemail. How bizarre to go into a field like that and to treat someone that way. Do you think he truly believes he was doing the right thing? (How scary.) I'll never understand what was going on in his head that day.


  1. It sounds to me as if he is suffering from ignorance and fear. And if that is the truth- he has NO business in that business. You are right.
    Jesus! Bad enough you go through what your body puts you through. Does it all have to be compounded by the "help" you get? This is not okay at all.

  2. It never ceases to amaze me how people STILL don't know about epilepsy, and I can understand totally how you might wonder whether this guy is CHOOSING to be ignorant or is just that -- ignorant. Or maybe even stupid? In any case, I really appreciate you telling these stories, because my Sophie has similar seizures sometimes, and she can't talk or tell me anything about them every. She is a tiny thing but the jerks and the head-butting and the back arching that come in a cluster sometimes seem behavioral, but we know it's not. In any case, I wish you didn't have so much to contend with -- and that everyone around you, including and most importantly, those first responders -- would be better educated and compassionate.

  3. Does it all have to be compounded by the "help" you get? This is not okay at all.



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