There is a young woman who popped up over and over in our Google searches of Harlequin Ichthyosis when Brenna was just a couple of days old, and this young woman gave us so much hope that it brings tears to my eyes just to think about. Hunter is one of the oldest people in the country living with Harlequin, and she and her family have been long-time advocates and educators about ichthyosis.
Hunter is now 20 years old and in COLLEGE! She was featured on National Geographic’s special episode on Skin when she was just 14, and last year, she made an appearance on Katie Couric, educating people about this disorder and what it means for her daily life. We got to meet Hunter and her dad last year at the FIRST conference, and she is truly a LIGHT in this world… she is someone that I know will be a tremendous role model for Brenna as she grows up, and we’re so grateful to know her. Thank you, Hunter, for everything you do, and for taking the time to share a piece of your life on my blog today…
College is a time of independence and exploration. Regardless of background, it also brings a certain level of anxiety with it. The fear of being away from home in a new environment surrounded by strangers is massive for anyone. However, that fear is especially great when coupled with Ichthyosis.
A big part of dealing with transitioning to college life is learning how to understand another person’s perspective. Sometimes understanding that requires first understanding yourself.
During my first few days as a college freshman, I was a bit isolated. The change from living at home to living in a dorm was daunting and terrifying. Even though I was very open about my disorder and willing to answer questions, it took me a while to connect with people beyond basic pleasantries.
One day though, I walked down the hall and was about to enter my room when something caught my eye. There was a small sticky note stuck to my door.
The note said, “If people stare, give them something worth staring at!”
There was no name on that note. I had no idea who had left it! But the little boost that little note gave me was more than enough to get me through. I took that note and taped it up above my desk, that way I could see it and remember that whenever I needed a little reminder.
I later found out that my now best friend Ariel left that note. She is literally one of my closest friends and I love her dearly! The fear of being on my own was quickly overshadowed by a feeling of welcome and compassion!
As amazing as those experiences are, it took me a long time to get to that place, to be open enough to trust those around me not to hurt me.
Isolation and loneliness were things that I struggled with a lot going into the end of my senior year of high school. A lot of that came from my position within my graduating class at the time. I was at odds with multiple people because of my skin. Throughout high school I butted heads with people because I didn’t understand why it was so hard for them to be open-minded and to accept me. I attributed their behavior to their ignorance and for the most part, that was the case. However, I learned that how other people experience me will reflect how I experience them.
My encounters with people from different backgrounds and creeds have opened my eyes to what it takes to be open with someone. I was very on edge for most of my high school career because I had been so badly treated in middle school. I was looking for the cardinal signs of bullying, and I often misinterpreted misunderstanding for malice. I read cruel intent where there was only confusion and fear.
Since then, I have found that if I am as open and trusting as I would like others to be, they will warm up to me and become more understanding.
Because I now have a great big group of loving friends, I no longer struggle with those feelings of isolation. I have been blessed with a group of people that would never leave or desert me. College can be a daunting and overwhelming thing, but I have found that the more open to new experiences you are, the more wonderful that people and experiences will fill any emptiness.
Read more about Hunter’s college experience in an article featured in her college’s magazine (on pages 12 and 13).