Music's Like a Snuggie for Your Soul

MUSIC'S LIKE A SNUGGIE FOR YOUR SOUL

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 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 against the belt that splinted my arms to my sides. I never would have believed it if my friend hadn't been right there 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 had 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."

Shannon, my five-foot-fourish 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 daggers 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 my 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), Corporal 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.

Sunday, February 21, 2016

Captcha :oPut@s!

Dudes! (Sorry, i know - i was raised by Ninja Turtles in the late 80's/early 90's, what can i tell you?) What a delight, the new Captcha is. I am not a fucking robot! Praise the lord! Hallelujah.What a relief. All this time, i kept failing those tests. I was so worried!

I'm off to play a late night hockey game with the croup (and the hot-and-colds and body aches) on account everyone else is sick too, so there aren't any available subs to skate. I'm half dressed (equipment-wise, for my fellow gutter-brains) in big hockey shorts and shin guards and trying to talk myself into throwing my big bag on my back, grabbing my stick, then hopping on my bicycle. What a harebrained idea this is. ... but i am a hockey addict and i do love my team. Gah! Tallyho!


Also, (yes i'm procrastinating, my sister's working part time at the rink. She gets to drive the zamboni! How cool is she?!) Alright - goodnight wherevers ya be!

Friday, February 19, 2016

Adulting is Horseshit



My friend Dane scouting Shoestring Falls on our way to a stellar December kayak szechuan 
I'm angry. I should be incredibly grateful, but for the last 2 weeks i've demonstrated the emotional maturity of a pre-pubescent T-rex. Outwardly i'm depressed. Inside i'm throwing a tantrum. I don't think it's very healthy.


Hm, since i last blogged things have been pretty good. I should keep better records but by my off-the-cuff recounting, i ate shit in aisle 47 on or around Valentine's day three years ago, and that was the first seizure at work that i blogged about. I'm still not sure who found me that day. I don't think it was more than a week later that i was at work again and couldn't get away in time. In a lapse of judgement i ended up in the bathroom. I didn't get hurt that time, beyond the shame and tongue biting. Considering the venue (en el trabajo y el baño), I don't remember it as being a very traumatic episode, as far as they go. The co-worker who found me was kind about it on account, she told me, she'd dealt with her mother having strokes when she was young.

I might have had one more around that time where i almost made it home. I don't live very far, but it's a fairly busy highway. I was fine, albeit a spectacle, as i was on or near the sidewalk with a helmet on, and fortunately Olive stuck right by me. I broke a tooth, but it was my favorite ambulance crew, and they quickly loaded my dog, bike and trailer into their rig and brought us home.

From about then, I went until New Year's 2015 and whatever happened that night landed me in the neuro ICU. (...an hr. and a half away from my hometown for nearly a week. That's probably a schmegshow post of it's own).

Yhen, I ended up in our local ER not long after returning to work from that debacle. My seizures tend to cluster, not necessarily back-to-back, but buy one, get one or two free for the week.

I don't remember anything leading up to that seizure. All i know is they found me in the middle of the road. My EMT coworker said she dumped about 8-12 ounces of blood and clots from the hat i'd been wearing. They dragged me in, but there was a doc i hadn't met before working (imagine that) and she was phenomenal. My sister was there, so the doc stapled me back together, and instead of going through all the CYA CT scans, B.S. and associated radiation, she consulted both of us like real-life, cogent human beings. Satisfied we were glad to leave on our own recognizance, she let us out the door.

... 

I don't know what my stupid problem is - why i'm bound-and-determined to fall most in love with the things i should never do. Kayaking's like surfing though - the rush and sensation are unlike anything else. I figure so long as my friends are fully-cognizant and, if my state is prepared to re-issue a driver's license, after 6 months, i can que será a little kayaking. Right? So... i guess i've been dabbling. Okay! I'm obsessed, i'll admit it! Don't tell my dad!


Kayak surfing in my yellow boat! 

We're posed to have a great runoff this spring. (Naturally.) I'd been getting out at least every-other weekend this winter. So lucky. My love affair with rivers and mountains has been re-kindled in the recesses of my capricious fucking brain.


Then, two Tuesdays ago i was at work. Olive was off somewhere else, ha, so i didn't get the benefit of knowing more than three or four minutes in advance. There was a newer guy sitting at the station directly across from me . I remember standing up with every intention of saying something, then i had a flash of my head splatting on all the surrounding concrete. I sat back down in my tall work stool, but by that time it was too late for me to clearly articulate anything.

My right hand bounced above my thigh. As soon as i felt my body twisting and my arm rising and jerking simultaneously towards the wall, i knew it was over. The twitching on the side of my face surged towards the kinking in my neck. Some moment just after, i yelled and slammed my eye socket into the raw corner of the wooden table behind me. I woke up and my face was warm, my lap was wet and my tongue was freshly hamburgered. There were no fewer than 32 people surrounding me, but thankfully, they let me sign and avoid the costly trip to the Emergency Room.



Lochsa launch ramp - Fish Creek 
It's raining right now. Everyone's going out this weekend. I don't want to make a reckless decision that my friends have to endure for the rest of their lives, (they did invite me, which is really, really nice. And being WFR an swiftwater rescue trained, and from the extent of our discussions, i have to think they fully ascertain the consequences if something did happen.) I don't want to be selfish, but holy Lord i want to go! Gah. Isn't that infantile? I should be counting my blessings for having been able to kayak period, but it's all i can do not to stomp my feet and "Whaaaaaaaaaaaaaaaaaah" ala Lucy. I'm thirty this year, but my land, this whole adulting thing is horseshit. I just want to throw a tantrum, run away from home and  go play outside forever.

Our magnificent playground 








Monday, February 15, 2016

13 People Describe Living with Epilepsy and without using forms of the word 'poop' *more* than 3 times, i do too

There was an article posted about a month or so ago on Themighty.com where 13 people were asked to describe living with epilepsy. 

Here are their takes:


1. “It’s like having an earthquake going on inside your head, with the epicenter always in the same spot. The only question is the magnitude and how far it will be felt.” — Cindy Platt Hanlon

2. “I’ve had difficulty explaining my seizures to people because seizures mean you’re unconscious and therefore unaware of the entire experience. I recently took my partner with me to the doctor to tell what she saw. Together we were able to do a pretty good job.” — Eugenie Margaret Macfarlane
3. “[It’s] like waking up in a place where you did not go to sleep. ” — Christopher Simmons
4. “Epilepsy is like sitting on a time-bomb, just waiting for it to go off at any time.” — Lara Houlihan Ashmore
5. “Fear, constant fear of the unknown. Fear that any time, any moment, you could get hurt or hurt someone else. Your stomach gets in knots, you become very anxious. It’s like someone or something is taking over your body for a few minutes, doing what they want with it, and then you don’t remember what was done. You can only pray you come out alive or not hurt.” — Stefanie Herdman
6. “My son once described his epilepsy as ‘his brain having a wild party without inviting him.'” — Maureen T. Stemmelen
7. “I used to tell people I’d hear a loud humming noise in my head and that my vision would get ‘fuzzy’ (like a TV channel would get when the cable went out).” — Dennis Carlson
8. “Epilepsy is like an onion — it stinks no matter how much you try to pull away from it, and it is often tear-inducing.” — Alexis Nicole Hymore
9. “I talked [to my children] about how the brain receives and send messages to other parts of the body all of the time — the brain sends a message to your lungs to breathe, your fingers send a message back to your brain to say they’re cold, etc. When my son has a seizure, his brain’s messages get a little mixed up and cause his brain to stop receiving messages (that’s why he can’t hear us) and sends out wrong messages. I tell them because his brain can’t receive messages, it’s important we take care of his body during a seizure, for example making sure he’s not near something hot that could burn him.” — Vera Chenault
10. “[It’s like] the brain is a computer and epilepsy is the virus. The epilepsy virus causes the brain to reboot, so please stand by when a reboot is in progress. There is no way to remove the virus so it needs to be quarantined (medicated). Please stand by as your doctor (the anti-virus), is working on the removal process.” — dhbepilepsy.com Facebook page
11. “Imagine your brain has a bunch of light switches. Normally, your brain works with your body, and when you want to move your arm, for instance, a switch is flipped. In someone with epilepsy the brain stops talking to the body and switches get flipped without the person wanting them to get flipped.” — Jolene Kristovich
12. “I usually just say it’s like a lightning storm in the brain.” — Onyx Song Jat Sharif
13. “Take files out of a file cabinet and throw them up in the air. Now put all the papers back in the right file folder. That’s what happens when I have a seizure.” — Doreen Langley
I can mostly relate to all of these descriptions. I've been pouting the last two weeks. I posted this article and my following submission to Facebook today. I thought i'd feel better, but i just feel pathetic. I didn't mean to be negative, but i'm pissed off at epilepsy. Fuck this shit. Iknowiknowiknow there are worse things. And Lord knows i've been off pretending like i'm a normal person practically. But here i am again. In all my freakshow splendor. (Forgive me fellow people with epilepsy, and/or loved ones with epilepsy; I, personally feel like a fucking freakshow.) Ya no real progress on the being-equipped-for-this-shit front either.

Uncontrolled epilepsy is like regularly entering hostage negotiations with a terrorist. You are the hostage. *And* the terrorist.
It's walking on rugs every day knowing someone is poised to yank one out from under you. After a significant time without seizures, it's like you're kickin it with Jasmine and Aladdin and someone guns down your magic carpet ride.
It's like playing real-life shoots and blooping ladders by yourself. Go X number of years/months without a seizure and you get to ride the elevators with the everyone else.


Someone Deserves Credit for this Image. Sorry.
It's like having a monkey that's always on your back. And also that monkey has a relapsing case of rabies. (Okay, so i do understand rabies isn't a relapsing type of disease, so for those more persnickety about our analogies, we'll say he's a bath salt fiend or he has an explosive case of IBS or something.)
It's like being mugged by a faceless assailant who steals your dignity, your driver's license (and various matters of independence), your family's peace of mind, your sense of security, a host of career and adventure prospects and opportunities, your memories, your energy along with your capacity for focus and concentration for the week, and, in turn, leaves you with a heap of medical bills, dirty trousers, awkward looks, headaches, and a bunch of pill-filled, orange and white-topped maracas to celebrate.
It's having a razor-thin tightrope and being expected to proceed as normal while maintaining the fine balance between living fully and mitigating the seemingly endless potential risks of life while epileptic.
It's like serving probation or being grounded for something you did or that happened to you while you were sleeping.
...