Life With Epilepsy In Public
“Do you know where you are?”
“Can you tell me who the President is?”
These are examples of questions I have been asked when I find myself uncomfortably lying on the floor in a public area. My brain is still trying to piece itself back together like a scattered puzzle. My vision semi-blurred and I give all the strength that I have in my weakened body to blink away the daze. My brain begins to understand the answers to the questions but my ability to speak has yet to verbalize them. My head feels like someone had just hit me with a brick and I just want to go to sleep but I realize… I’m in a public place.
I have lived with epilepsy for a decade. I have no control of when or where I will have a seizure. Even after all of this time, still I say a small prayer that I can make a trip to where I’m going seizure-free.
I have had more seizures in public than I can count. Both large and small. Some I will have to pause and hold onto a sturdy surface until it passes. I look up and at times see a passerby gaze at me as if perhaps I’m drunk. Perhaps I’m on drugs. Perhaps I’m experiencing a medical issue but yet they move along regardless.
Some I awake disoriented on the floor after experiencing a seizure with strangers staring heavily and being flooded by questions that I can’t yet answer. Waiting for my brain to stabilize. “Can you tell me your name?” “Do you know what day it is?” “Do you know where you are?”
I have had public seizures where during, you could hear a pin drop. No one there to lend a helping hand. Seizures where kind individuals stay with me until my loving husband comes by my side and explains the situation for me until I can speak. Seizures where paramedics swarm in and stick a needle in my arm and strapped to a gurney, prepared to take me to the hospital. I’m thankful for those who thought enough to call for help and yet can’t help laugh a bit inside needing to explaining to paramedics that I’ll be fine and I have epilepsy.
Where I go, I go with my husband, family or friends. When living with epilepsy, especially if it’s not under control, it’s always better to take precaution should anything happen. Never make assumptions. Even if you’re feeling top-notch.
When having a seizure in public, it’s nice to know that in most cases, you can have confidence that people will do the right thing.
What should you take when going out in public?
- A family member or friend
- Epilepsy ID Bracelet
- I.C.E. (In Case of Emergency) Card
- Epilepsy Medication
- Cell phone
- Water
Even should a seizure occur, which of course is not what we want, take that situation and turn it into education for anyone who may be in witness.
Don’t allow epilepsy to prevent you from living your best life. Yes it’s vital we take precautions when stepping out into the public, but step out in confidence in knowing that we are prepared no matter what.
Tiffany Kairos
I am a happily-ever-after wife, an epilepsy diagnosee, advocate for epilepsy awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!
3 Comments
Rhonda G
Thank you for sharing this. I have JME (for about 20 years) so I have both myoclonic jerks where I stay conscious and grand mals as well, although those are less frequent, I have only had 9 grand mals in those 20 years. Only a few of them have been in public and only twice have I gone to the hospital for them, the first and second ones, the first one by ambulance. But I do remember the ambulance attendants asking me what year it was and I had to think so hard lol to recall that it was 2000 which you would think would be significant enough to remember lol! Then they asked me my school’s name and I knew immediately lol.
Kori Ruff
Thank you for your open description.
I’ve had epilepsy since I was 25 (20 years). I do not have your confidence in not going to the hospital when I fall most times, I am so often worried that I have done myself some damage when I fell. Maybe this is a step I should work on.
It was reassuring to hear your story.
Jose
Thank you for sharing, my son was recently diagnosed with focal point seizures. It affects part if his brain, although he doesn’t get recurring episodes. He recently had one after 3 months of being seizure free. Neurologist continue to adjust the medicine. Overall he is a healthy 17teen year old well now 18teen. I want to thank you for your post they are encouraging and helpful. You immulate courage, valor and strength.
Our prayer is for our son to be heal and everyone who is affected by seizures and or epilepsy disorder. But even if it takes time or becomes part of life. We will still serve the Lord.
Thank you. Kindly