The Friends Who Gave Me the Courage to Share My Fibrous Dysplasia Scars
April 9, 2016. I woke up nervous. I had a photo shoot at 2 p.m. to have photos taken of me and my scars.
I suffer from a rare bone disease called fibrous dysplasia (FD), which affects about every one in 15,000 to 30,000 people. It is estimated that only about 2,000 people in the entire world have it. I have had a total of 11 surgeries and became disabled three years ago. Half of the entire left side of my body is scarred. I have scars on my left hip, femur and knee from FD and also have a scar that extends from my side to my back from having two spinal fusions due to scoliosis.
I am part of a nonprofit organization called FD Warriors Inc. with two other ladies who also have fibrous dysplasia, Skye and Lauren. The term FD Warriors is something I helped create to unite others who have fibrous dysplasia, and #fdwarriors has blown up in the FD community. Part of our focus is raising money to help other FD Warriors with their medical bills.
I met Skye and Lauren through social media a few years ago, and since then we have all formed a bond much deeper than most friendships. We have an understanding of one another that no one else really gets. Skye has FD in the entire right side of her face/skull. Lauren has FD in the entire left side of her face, and I have FD in my left hip, femur and knee. Skye and Lauren both live in Tennessee and I live in Wisconsin.
Lauren came up with an amazing idea to have a Battle Scar Challenge, where you take photos or have photos taken to show your scars proudly. We wanted to show that scars are beautiful and people who have scars and disabilities are just as beautiful as anyone else. Lauren and Skye beat me to the punch and had their photos done a lot earlier than I did, and they turned out so beautifully. Their photos inspired tons of other FD Warriors to show their scars to the world.
I wasn’t able to get my photos done until April 9, because my friend Jon, who is my photographer, is a busy guy. That was perfectly OK with me because I was actually really nervous about doing a photo shoot all about my scars and my body. I suffer from body dysmorphia and am in recovery for an eating disorder, so doing this type of photo shoot was really going to be a challenge for me, in more ways than just the Battle Scar Challenge.
I got ready for the day and before leaving to go to my mom’s house, I was talking to my friend Tyler. He asked what I was going to do that day and I told him about the photo shoot and blurted out, “I don’t know why I’m doing this.” And he asked me, “Why are you doing this?” I told him about the Battle Scar Challenge — how Skye and Lauren had the courage to do it and how I wanted to show that scars are beautiful. I told him I’m comfortable with showing my scars, I’m just not comfortable with my entire body.
But I was determined to do this, despite my nerves and being worried about my body. It also gave me comfort to know that my mom would be there with me. She came up with the amazing idea to have me covered in silk and draped around my scars for my photo shoot and she was even going to do some photos with me because she has always been my number one support through my fight with FD. She has never missed a surgery, and has held my hand through everything.
Skye and Lauren started texting me first thing in the morning and it seemed like they were more excited than I was!
I drove to my mom’s house early so I had time to relax before the big shoot. I had woken up in a lot of pain that day, and my mom had warned me I should bring my pain meds since it was going to be a long day for me. She was planning on taking me out for a bite to eat after the shoot, and we had three hours of shooting time.
Around 1:30, my mom and I got in her car and headed to Jon’s. We got there a few minutes after 2 p.m. — perfect timing. Jon let us in and my mom and I had the honor of meeting some of his adorable kids and his wife before they headed out. Jon had his little studio set up, and it was all starting to hit me this was really happening.
Before we started, Jon handed me a bag and said, “Here, this is for you.” I opened the bag and saw a t-shirt with #FDSISTERS on the front and our FD Warriors logo on the back and a bracelet that Skye made. I was so surprised and asked him how he got it. He said that he thought I was supposed to get this shirt and said he had the address somewhere. I thought it was so sweet that Skye would send a shirt to him so I could take photos in it. And I was really happy she did because I forgot all of my FD Warriors gear at home (when I’m nervous, I lose my mind).
Jon said I should change into my new shirt and we could start off with those photos. I went into the bathroom and changed into my new #FDSISTERS shirt and put on my bracelet proudly. I was so grateful to have such an awesome friend who would go out of her way to send a shirt to my photographer for my photo shoot.
After Jon’s family left, John told me to sit down on the stool for some test shoots. He told me to close my eyes because the lights were going to flash a lot and he didn’t want the lights to hurt my eyes. So, I closed my eyes while he tested the lights and took some test photos. Then he told me to open my eyes for another photo. My mom was already taking photos behind Jon.
Jon then showed me the test photo and behind me were Skye and Lauren. I was so confused and asked him, “How did you do that?!” I honestly thought he had somehow photoshopped them into the photo.
I turned around and Skye and Lauren were standing behind me. It’s safe to say that I freaked out. I hugged them both so tightly. I have never been so surprised in my entire life. And my mom caught the entire thing on video. Be careful though, it’s a tearjerker.
Skye and Lauren drove all the way from Tennessee to meet me. They even had Jon and my mom in on the entire thing! It was surreal to be able to hug them and talk to them in person. They had been hiding in a room the entire time while I was completely oblivious. To be honest, it still doesn’t feel real.
Having both Skye and Lauren there helped me with my confidence. I thought at first it would only make me more anxious, but having their support at such a big moment of my life helped me deliver what I intended to with the photos. I wasn’t uncomfortable showing my scars to them, as they understood my journey.
Having my amazing mom there helped, too. My mom even jumped in to take a few mother/daughter photos with me, since she has been my main support. I also took photos with Skye and Lauren in our #FDSISTERS shirts. We all had so much fun!
After the photo shoot, we sat with Jon for a while and looked through all the photos. It was still so surreal to have Lauren and Skye sitting in the same room with me. We had talked so many times about having a photo shoot done when we were all finally together, and I couldn’t believe it had actually happened. It was an amazing experience for everyone involved. It’s not every day three best friends, brought together by a disease that is so rare, get to meet in person. It was the experience of a lifetime.
My mom, Lauren, Skye and I all went out to eat afterwards. We talked a lot about our struggles and how we were all diagnosed. It was nice to sit and listen to their stories and be able to relate and not feel alone. After dinner, Lauren, Skye and I continued to spend time together and I wouldn’t trade that experience for the world. I wish we had more time. It went by so fast and I wasn’t ready to say goodbye.
At the end of the day, I could finally answer Tyler’s question. Why was I doing this? Earlier on in the day, I looked around the room and realized why; the reasons were right in front of me. I could have very easily called the photo shoot off, but I didn’t. I knew my mom would be there to support me, and two people who have been through the same struggles and have listened to my fears for a long time now were there with me, too. And that gave me the confidence that I needed.
Fibrous dysplasia has crippled my body and in ways has crippled my spirit. I am working on that every day, and with the help of my fellow FD sisters and family, I am getting there slowly but surely. It is so easy to feel alone when you have a rare, chronic illness. But at the end of the day, you are never really alone. There is always someone, somewhere, who understands what you are going through. They could be in the same state as you, or all the way in Tennessee.
Use the tools available to you to reach out and find others who share the same struggles. Finding others who have the same struggles as me has been my silver lining. Without fibrous dysplasia, I wouldn’t have met Lauren and Skye, and everyone else I have met along this journey. They make it all worth it.
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