Music's Like a Snuggie for Your Soul


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 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.” — 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.


  1. Alex- there you are! I have been wondering about you so much! Thank you for speaking here again.

    1. Ha Ms. Moon, you are cute. No, THANK YOU for your presence and for your kind heart and wonderful comments.

  2. How good to see you back, you wonderful fucking freakshow and all. And just for starters: How do you know there are worse things? Don't make it small when it costs you so much. Because you are strong.

    1. This comment has been removed by the author.

    2. (Oops, sorry - I should've just added a second comment)Thank you Sabine! Thank you heaps. It's presumptuous, for sure, but i get to do *most* things, and live fairly independently. How much that translates to greater quality of life, i'm not certain. Epilepsy poses a threat of becoming a terminal illness, but for me it definitely isn't there yet. Thank you for saying so, but i'm not that strong! More of a whiner really. It's a beautiful life, but i'd be game for a hibernation option [every now and then]! (sorry - that struck me as kind of important to qualify.)

  3. It's not small. You know I have many, many friends with kids who have disabilities. I have friends who have kids with cancer. I have friends who have kids that have died. All of these friends whose kids had seizures, too -- well, they all say that it's the seizures that suck the most. So there.

    And I'm so glad that you're here writing about your experiences. I want to hear more about your life -- the epilepsy, the adventure -- all of it.


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