Butterfly Challenge

Chris Kuhn (CK): What kinds of reactions and feedback did you get from your appearance in Skirt! Magazine?

Candice Patterson (CP): A coworker in the emergency room found and posted the article. So I was taken back by  seeing the photo in the nurses' station. It informed a lot of people about my disease and the advocacy that I have been working on, that was a great thing.

CK: What’s new with you since we last featured you?

CP: In November 2009 I needed surgery to replace a chin implant and repair damage to my jaw. This was a doozy, and I am still recovering. For the repair, my jaw was broken in four places to reassemble it, tumors removed and a new chin was built from existing bone. Going into the surgery, the idea was to use my own bone to create the chin and a possibility that bone would need to be used from my hip. The thought of my body being cut into caused intense fear and anxiety. 

The surgeon did not need to use bone from my hip, instead was able to use bone from my jaw and I was able to walk a few hours after awakening. The bad news was that I couldn’t open or move my jaw for about 6 weeks. No talking, no chewing. All communication was done through a notepad, sign language and eye movements. Notepad and Sharpie markers were everywhere, in my purse, every room, every table.  I struggled with terrible pain and just plain frustration. Because I did not speak, when I ventured out in public, people assumed I was deaf and their communication with me changed. I began a photo journal on Facebook which included photographs of different stages of recovery, my thoughts and coversations on the notepad. This experience allowed me to update friends and family and became an outlet for my pain.

Often there is a misconception that I am always this strong inspirational  person. The truth is that no courage results without fear.  Normally I disappear for several months, have surgery, recover and return good as new. It’s become important to me to share the entire experience, the ugliness, the pain, the moments of sadness as well as the moments of victory. It’s helped educate people about Neurofibromatosis  and embrace our flaws.  Regaining my self esteem has been a journey, when it is taking a team of people to take you apart and rebuild you to become beautiful, that’s a journey, and that was the inspiration for the title. I am working on publishing the journal into a book.

CK: You mentioned in our profile with you that you were hoping to get more opportunities to speak about neurofibromatosis. Hae you had any chances to explore this since the article? 

CP: Yes, I continue to speak at local high schools and was the MC-Host for a concert called, Riverview Inspired. The concert featured students and adults in the Riverview Community that have overcome an obstacle and featured inspirational and modern music.  We are choosing more students now for Riverview Inspired 2011 to debut in the spring.

CK: When we last spoke to you, you were taking part in various local races to raise money for the Children's Tumor Foundation. How has that gone for the past year and a half? 

CP: I haven’t been well enough to race and just recently began training again. Considering a sprint triathlon for August.  I will be riding in the Horrible 100 cycling race in November 2010 with the NF Endurance Team.  The link below provides more information about joining the team or making a donation to the Children’s Tumor Foundation. For information regarding athlete sponsorships or speaking opportunities, please email  www.butterflychallenge.com

CK: What’s have you learned about yourself since we last talked with you?

CP: I’ve learned to shut up and listen. Not being able to speak was the greatest gift in my pursuit to become a better listener. Although I’ve practiced mediation for 20 years, I never learned to calm my mind until I stopped speaking. I found a great sense of peace in the experience and spend more time being silent.