My Meningitis Marathon

First, of course I’d like to thank you for creating a platform such as this to inspire people, not only to share their stories but to find support here and grow and continue to fight through their own hardships. I’ve been searching for a way to get my personal story out in hopes of helping others with this rare condition and give them hope that they too can continue fighting.

My name is Emilie. I’m a 32 year old retire professional athlete (synchronized swimming) from Ohio. I’ve lived in Las Vegas since 2010 and was a Cirque Du Soleil performer in 2 different shows over 5 years. I spent the last 2 years living in LA working on the Avatar Sequels as a stunt actress. When I moved home to Las Vegas I decided I needed to take a break and rest for a few months. As my body recovered my worst fear appeared once again. As I took a step in the kitchen one night I felt the familiar pain shooting through my spine. A pain I knew very well. I looked at my husband, fell to my knees and began to cry. I knew I had meningitis again. The 5th time in 6 years. I was crushed. I knew what was in store for me.

Meningitis is the kind of thing that comes on so fast you don’t know what hit you. Most people are in the ER on day one, because normally by day 2 you’re dead. True of bacterial meningitis. June 2013 was my first battle and I’d like to share that particular experience. I woke up on day one with a bad migraine and just feeling “off”, so naturally I went to the gym. It did not go well. I tried the same thing on day two and it also it did not go well. On day three the pain had spread to my entire upper body. I couldn’t move my neck arms or shoulders and my vision was blurry. I thought maybe I pulled everything in my neck so I decided to try a massage. I cried the whole time it was so painful. By day four I couldn’t walk so I called my boyfriend to come get me to keep an eye on me. By day five I called my cirque doctor who immediately ordered me to the ER. But I grabbed a latte first because I read caffeine can help migraines. They instantly suspected meningitis even though they were confused that this 5’7 120lb blonde with her latte rolls in saying “hi my name is Emilie I’m in the worst pain of my life and might be dying, ‘sips latte’.

They wanted to do a spinal tap and I said, “no thanks” and they sent me home. That’s when things got bad. I slept in another room than my now husband James that night and really knew I was dying. So I threw myself off the couch and made the long journey down the hallway crawling with one arm. When I got to him I was throwing up everywhere, he carried me to the truck and sped to the ER. I walked in by myself while he parked and I laid my head on the reception desk. They recognized me from the day before and rushed me to get a spinal tap. Almost immediately the doctor came back in a full on PPE hazmat space suit and rolled me to isolation where I remained mostly unconscious for 10 days. The hospital is not a place for recovery, it’s a place to not die. The recovery battle begins at home. And it took some months. When I was better I thought “ok great, that’s over, it’ll never happen again, ONWARD CHAMPIONS!” But exactly a year later it happened again, and then 6 months after that, and then again and again. Now that I’ve just finished recovering from my 5th battle I’ve come to an understanding. The universe has given me this gift because I can beat it, and share my story, and help others kick ass too. I just need to sack up and tell my story, so here I am. This fight doesn’t end for me and that’s ok. I want to give hope and maybe answers to others. I want to show that you can have the life you see for yourself, even when doctors have no answers for you. I’ve seen all the doctors. I’ve read every single piece of information on this Illness, doctors have literally shrugged at me. (I have recurrent viral meningitis)

But I will continue to LIVE, continue to fight. I can either worry about this happening again, or I can dig my heels in and lean in spear tip first. So anyone out there experiencing these battles, I understand, I know you’re scared, you may feel guilty for relying on others sometimes or frustrated, I know you have chronic pain. Listen here, those are small beans. Small. Beans. It may be a part of your life now but it isn’t your whole life. It isn’t who you are. You can live the life you want to live. You’re not alone. Heels in, spears forward. I got you.


Author: Emilie