I had finally graduated from college. I was an art teacher. I liked to create my own art. I saw my friends frequently. I dated. I was energetic. I was always busy. There was nothing I couldn’t do. I was Super Susan. Then it all fell apart in a perfect storm of illnesses.
In 2013 I was diagnosed with a number of conditions (Superior Canal Dehiscence, Fibromyalgia, Chronic Migraine, Chiari Malformation, Anxiety, and Depression). I had signs of some of them surfacing years earlier but I had no idea it would end up costing me so many things.
I had to hang up my teaching hat. I lost my job. I lost friends. I lost my energy. I lost any tolerance for pain I had. I had frequent panic attacks. I was in and out of the hospital. I lost my family for awhile. I even struggled through a few months of homelessness.
In the midst of everything I came up with the name SupEARior Susan, based on my ear condition, Superior Canal Dehiscence. I needed a new super hero name since I suddenly had a super power. I could hear my eyes moving in their sockets! It was complete torture then and I still hear them today. My superhero name reminded me I could indeed fight these battles against my challenges. And win!
Today I keep that superhero identity in mind as I deal with all of my conditions. But at the same time, I know my illnesses do not define me. They are a part of me now. But they are not the only thing about me. I have been working on taking back some of what I lost and adjusting to my new self. I have a home again. I have learned to pace myself. I have learned I need recovery time after events and outings. I have learned I need to be kind to myself. I have started creating art again. I have been connecting with friends and even making new friends. I’m in a relationship again and have reconnected with family. I am strengthening my relationship with God. I have learned to appreciate the simple things in life. And perhaps most importantly, I have learned that just like illness does not define a person, neither does a job or career. There is so much more.
I like to journal and create art to cope with the effects of my chronic pain and illness. Sometimes it’s “pretty art” and sometimes it’s “dark, angry, noisy eyeball art”. I have always loved storytelling so I hope this becomes a place where I can write about my experiences, share the ups and downs, share my art, and raise awareness for invisible chronic pain and illness. I have good days and bad days but I want to let others know they are not alone in their struggles and that there is hope.