Webinaires et vidéos de la Semaine de sensibilisation 2020

Webinaires et vidéos de la Semaine de sensibilisation 2020

Eris Origins

 

To hear my dad tell the story of my birth, there is always one part he can’t leave out. My name was yet to be set in stone. As my father came to see my mom and I in the hospital after work, he had found out that that had changed. My full name is a complete legacy, and my first name was derived from my mother’s favorite aunt. My dad was not amused, and as a girl growing up who struggled to fit in, what was sometimes referred to as a weird name by classmates didn’t help matters.

 

Fast forward to 8th grade; my horizons were about to expand. I had never even heard of another Eris, except my mom’s aunt. Then one morning, during what was a 15 minute quiet time before school officially started, I was flipping through my English Literature book (nerd alert), and I saw it; my name, in print, in a school book no less. Eris, according to Greek mythology, was the goddess that started the Trojan war. Huh? This was an important historical event, why had I never heard of her before? Most texts have almost the same word for word paragraph about her. Sister to Ares, daughter of Nix and Zeus. Eris is the personification of strife and chaos. All of Olympus had been invited to the wedding of Achilles’ parents, except for one; Eris had been purposefully left off the invite list. She was hurt, dejected, and decided to throw a golden apple with the words “For the fairest'' inscribed on it at the feet of 3 goddesses. None of the goddesses relented, beginning to fight over the apple and title of the fairest. The fighting turned to war, the Trojan war. The story had drama, intrigue, history, hints of the evil queen from Snow White. I was hooked.  

 

Eighth grade was also significant to me for another reason, it was my first tango with what would become pilonidal disease. (Medical science alert: Pilonidal disease is not the same as 

Hidradenitis Suppurativa. Not everyone with pilonidal disease has HS, and not everyone with HS has pilonidal disease.) I had developed an abscess at the base of my tailbone. The pain was excruciating. I had to ride to the doctor's office on my stomach in the back of my grandmother's minivan to get it lanced. Every bump in the road was torture. I got to miss a few days of school, but it was far from a vacation. It’s not something I would  have wished on anyone. Because of a combination of a pilonidal surgery that went down to my tailbone and HS flares in my groin area I have not been able to sit properly, or longer than 30 minutes, without causing damage and pain in over 15 years. Years later, my HS developed, and I wished for those early days back, because I had no clue the fight I was in for. If there was ever an incurable disease for me to get, it would be one named after a Greek monster, causing chaos in its wake, unique to each patient in nature, that few people knew about, where we would have to fight for our seat at the table. HS had my name all over it.

 

It took a long time for me to embrace my name. I was in my mid 20s when I realized my name was meant for me. Only a moniker so distinctive could fit my quirky hippy soul. The strength of the goddess Eris showed me that sometimes we have to fight our way out of the chaos (although she was a bit melodramatic about it), and sometimes we have to put ourselves in the shoes of the other guy, because things aren’t always as they seem.  

 

Last year I was given a golden opportunity to accomplish some things on my bucket list by walking, which with HS is not always easy or possible. Follow my journey as this month I vow to make it my most active month yet, raise awareness for HS with some nerd alerts, geek outs, and a little bit of science sprinkled in.  

Written by Eris Hilburn

Edited by Brindley Kons