By Katelyn O’Leary
This is the only thing I can think of as I slowly walk back to my bed, my nurse gently guiding me so I don’t fall. I keep thinking of the asterisk, despite the buzzing of the ketamine and the dopey effects it has on my brain. The asterisk symbolizes the current state of my life – what am I doing and where am I going? Will I ever be able to carve out a life for myself with my condition? I’m waiting for the asterisk to guide me to the bottom of the page, where I can find out for myself.
This summer has been pretty terrible. Sometimes you just have to say it and not sugar coat your feelings. Having CRPS makes every obstacle, social event, and family gathering pretty terrible. When you live far from your family, it’s hard dealing with this condition. And when a family member discredits your condition – it hurts more than the CRPS. So it was with a pulverized heart and a serious case of the blues that I met up with my pain management team at USC. As of this June, they want to do 6 more months of ketamine infusions and added more medications to my daily regimen. My doctors insisted I stay positive and continue to fight this.
But how do I fight? All of my defenses, my armor really, is gone. Months of exhaustive treatments, medications, heart issues, and just terrible pain has eroded my resolve. I am fully exposed to the world and terrified. Terrified of people running into my leg at the movies, of kids bumping into me as they pass run through the park. Anxiously preparing for social gatherings (do I have my meds? A bag for ice? My handicap placard? My crutch?) and worrying about how I appear. The old “me” loved meeting new people, making new friends, enjoying the culture or the scene.
But on the other hand, I have a network of friends in Los Angeles, whose love and support has gotten me through the darkest days. Friends who are so wonderful, every day I am grateful and every day I am scared of being a burden to them. I’ve had received incredible letters, care packages, books, Facebook messages, and just so much love shoved and showered my way that it astounds me. My friends and family have not given up on me and their support has not wavered.
Right now I feel like a boxer face down on the mat, trying to get back up and keep fighting. I’m slowly rising. I’m listening to the support and the love and I’m trying to get back up. In my mind I can hazily see the person I used to be. But now I have to find a way to focus only on the present. To focus on the future I am desperate to carve out for myself.
*It’s not over yet.
Katelyn O’Leary suffers from CRPS. She lives in Los Angeles, works in the entertainment industry. She is a frequent contributor to the National Pain Report.