Throughout my youth I was very self-conscious, tentative, and reserved. My insecurities were greatly heightened by the progression of my disease, FOP, but I hid a lot of what I went through from anyone outside of my immediate family. It was too intimidating to imagine opening up about my struggles and sharing my perspectives on life with a rare disease. I haven’t really been able to express how it actually affects me until more recently.
I started this blog in 2015 after five or so years of juggling the idea around in my head. Within those five years, I also participated in different public speaking events and realized my true passion for telling my story and raising awareness. After many years of being silent, I finally found my voice.
I feel as though everything in my life thus far – my insecure teenage years, struggling to begin publicly blogging, gradually becoming more confident and opening up – has led up to one main event: finally being able to share my story with the world.
Last fall I was interviewed and filmed by CNN Health for a profile feature! It was a huge honor to be asked to share my story and help spread awareness of FOP. I immediately had a mix of excitement and nervousness after being contacted with this incredible opportunity. I knew this would push me way out of my comfort zone, possibly even more than I could prepare for, but that it would also be a life-changing experience.
The CNN producer, Jacque, and I corresponded over the phone and via email for several months prior to the filming. I learned that the feature would consist of an article based off our interview, as well as a short video about my life with FOP. Jacque eventually traveled to my house along with the video producer, Bryce, on August 23, 2016. We spent some time chatting and then I had my hair styled by my wonderful friend and hairdresser, Chris. Since I’m physically unable to do my own hair, she graciously offered to help me out in preparation for the filming. It meant a lot to me to have a familiar face there at the start of this new, somewhat daunting experience.
Both my mom and I had separate interviews filmed — this was the one part of the experience I was most anxious about. I’ve always struggled with talking on camera, but Jacque and Bryce both greatly helped me find my way through my nerves. My interview took about an hour, with questions ranging from my love of traveling to my most challenging physical limitations.
I was then filmed doing a few everyday tasks to show how FOP has affected me over the years. I’ve come to realize that many “normal” activities and actions (putting a shirt on, brushing my hair, walking, etc.) are actually quite a bit different for me than for others without my physical limitations; I use a variety of assistive devices and my gait is slightly uneven. It was very important to me, as well as the producers, to be able to highlight how I’ve adapted to FOP’s progression.
While I was being filmed, my mom asked Jacque how she came about covering an FOP story. Jacque explained to us that approximately ten years ago she first learned about FOP while watching the medical drama TV series Grey’s Anatomy*. On that particular episode, one of the guest characters was portrayed as having FOP and in need of serious medical care. I was barely 14 at the time, but I still vividly remember watching that episode of Grey’s with my parents. It turned out to be amazing awareness for our community and something that remained in the back of Jacque’s mind for nearly a decade.
Hearing this story instantly made me think back to my teenage-self and how terrified and apprehensive I was at any public opportunity to tell my story. Now, at age 24, new experiences to help raise awareness of FOP make me feel excited and empowered.
After the filming was completed, I had another mix of emotions. I was sad, relieved, happy, nervous, restless… Everything felt so surreal and for the first couple of weeks I had to remind myself that it actually happened! We weren’t sure when the final piece would be published, but I knew it would be perfect timing whenever it was ready.
The article and video ended up premiering on CNN’s website and Facebook page on December 26, 2016. My mom and I were in Wisconsin visiting family for Christmas, so watching the piece online together made the entire experience even more special.
I received countless Facebook messages, comments, and emails (from all over the world!) within the first 72 hours, the majority of them extremely thoughtful and kind. Hundreds of my Facebook friends and family members showed their support by “liking” the video, sharing the article link, and tagging me in Facebook posts (making me feel so loved). My phone had nonstop notifications the first day and I remember being so excited to check it each time. I also felt very encouraged by the amount of people I didn’t know who reached out to tell me they’d be keeping me in their thoughts and prayers. I was so overwhelmed (in the best possible way) by everyone’s kindness and compassion.
It wasn’t too long before I came across the negative comments, some of them pretty terrible, but nothing I read was a complete shock to me. I know there will always be “trolls” who write random false, disrespectful things without bothering to read the actual article or learn more about me. It certainly warmed my heart to then see a few unexpected replies from other people standing up for me in various ways. Because of them, I’ve found it much easier to overlook and rise above the negativity.
Not long after my story was published, I started receiving notification emails from GoFundMe, a website that allows visitors to donate to different causes. A family friend had set up a page for me a number of years ago and I eventually decided to include it on my blog homepage (but we didn’t link to it in the CNN article). The donations are deposited directly into my special needs trust fund that I only use for specific personal or medical needs.
The total amount of donations added up to approximately $5,000 within 48 hours which truly left me speechless. I received so many new donations at once that by the second day, GoFundMe started sending hourly emails instead of individual notifications. I’ve been able to use some of that money to purchase more accessible furniture for my bedroom and a smaller laptop that’s easier for me to carry. I’ll also be focusing any future donations towards airplane travel and visiting new places, something that’s become very important to me as my disease is progressing.
I’m incredibly touched by the utter kindness of people who saw my CNN feature, many learning of FOP for the very first time. Thank you to everyone who took the time to find the donation page and give so generously!
As I expressed at the beginning of this post, I never imagined myself capable of doing something like this even just five years ago. I was very fearful of anything that was new and unfamiliar and didn’t know how to overcome whatever was holding me back. Sharing my story has helped me uncover so many pieces of myself that were hidden by my physical disability and insecurities. This experience is definitely one that I’ll always keep close to my heart.
Special thanks to:
– All of the producers at CNN, especially Jacque and Bryce, who created and edited this piece that perfectly highlights me and my life with FOP.
– My second family at the International FOP Association (IFOPA) who inspire me daily and have helped me accomplish so much more than I ever thought I could.
– My loved ones, near and far, who have continuously encouraged me through the years. ♥
*Grey’s Anatomy episode featuring FOP: “My Favorite Mistake,” season 3, episode 19 (available to watch on Netflix or YouTube)