Tell me when your story began?
I grew up in Elko, Nevada. When I was twelve years old, during the first game of my soccer season, I broke my fifth metatarsal bone on my left foot (or so the doctors thought). I was so proud of myself that I played the whole rest of the game on a broken foot. Sadly, however, I was out for the rest of the season on crutches and in a boot. When the spring season started back up in April, I couldn’t wait to get back on the field. First game of the season, I was ready to go. I felt so free and was finally back to where I felt like I belonged. During the game I fell once again. The pain was familiar but much more severe than last time. I was down and out for the rest of the game, fearing the worst.
There I was, back in a boot and on crutches. After removing my cleats, the damage was clear. My foot was dark purple, swollen, and warm to the touch. Later that fall, this happened again: the change of color, size, and temperature of my foot. This was now happening around my sesamoid bone on my other foot. The strangest thing was that these events started to happen with no event linked to them; no injuries, or falls of any kind.
All I wanted to do was go out and play soccer. I had finally made a really good team that was supposed to travel outside the country, and I felt crushed knowing I couldn’t play anymore. Soon after these breaks many other body parts would swell, change color and temperature, and become extremely painful. It started becoming less localized and more generalized. With all these breaks, the doctors started thinking something else had to be going on, but not much progress was made in figuring out what it was.
I had “five breaks” in two years and the pain started becoming unbearable. I was in middle school and my body ached. There were mornings when my mom had to help get me dressed because I was in such pain. Some days were better than others, but that’s what made it hard. I never knew how I’d feel day to day. At school I’d tell myself, Okay, I just need to make it through one more class. I took it one class at a time. I was just constantly trying to pace myself and make it through the day. Just when I thought nothing could get worse, and right before going into high school, I started getting migraines just about every day. Some were so bad they’d last an entire week. They were and are debilitating; I lose vision, hearing, and I can’t think or talk straight. My family didn’t know what was going on. At their worst, these migraines kept making me black out, and even left me with a concussion, bruises, and fear of taking the stairs. I was missing more school than I had attended, and had to do online schooling halfway through the year. We were fed up and exhausted and looking for answers.
We finally ended up at Primary Children’s Hospital. The doctors started asking questions, and looking at all my x-rays from my broken bones to actually find no indication that I had ever broken a bone. There were no scars that had been left on my bones, or any indication that the breaks had happened. They began testing for other things. After several years, they determined I had something called Reflex Neurovascular Dystrophy, or RND. [This is a condition that leads to severe pain in the joints and the muscles.] After several tests, blood work, scan, and hospital stays, we were just happy to finally have an answer: a name to our nightmare.
RND is a very rare disorder with no treatment. The intervention that helps the most is physical therapy. There is only one hospital in the country that deals specifically with RND: the Children’s Hospital of Philadelphia, or CHOP. They wanted me to go there but by the time they could get me in, I would’ve been 18 years old and too old to be accepted at the facility. My mom and I met with a physical therapist who lived nearby, and she kindly agreed to research RND, was willing to learn more about it, watch videos, and do whatever she could do to help me. I ended up going to see her after school three days a week and for three hours each time.
My physical therapist encouraged me to make a goal, or something to work towards. I decided I wanted to run cross-country. My brother did it his senior year and seemed to love it, and so I made that my goal. In the beginning I could barely even tie my shoelaces or get dressed to go out running. I remember my mom would say, “How about you try going for a walk?” I’d make it to the end of my driveway and be in too much pain to continue that I’d have to turn back. But by the time I finished physical therapy, I was able to run a mile without stopping. I ended up running cross-country. Every race I came in dead last, but my time improved with each run and it felt so good to accomplish something I had worked unbelievably hard for. It was one of the hardest things I have ever done, but it made me feel strong like I finally had power over my disease and not the other way around. It wasn’t easy, and involved many tears and mental/physical breakdowns, but the end result was having my life back and beyond the hell I went through. When I was done with the season I was able to run six miles without stopping. I could probably walk quicker than I was actually jogging, but at least I was jogging and at least I had accomplished my goal!
What was a day in your life like during those five years of not knowing what was going on? And also, what has life been like since?
I was in middle school where I was already vulnerable, and it was a really hard time. I had many moments where I would just cry and think, Why is this all happening to me? At first I thought I could be confident through it all and I was just going to deal with it. But over time, my confidence declined. In the beginning of all of this, the pain was something you could see, with my body parts turning purple and getting swollen. But over time, as the pain became more general to my entire body and the headaches started, you couldn’t really see what was going on, and many of my family members started thinking I was making all of it up and wasn’t being honest or truthful. It was hard to think they thought I was “doing it for attention.”
I wished so badly I didn’t have RND. I had times where I prayed I wouldn’t wake up the next day because I didn’t want to deal with it anymore. These thoughts led to me do some things that caused self-harm. I felt so numb, and I think I started harming myself because I wanted to feel something “different.” I never thought I’d be “that person.” Before this point in my life, I always thought it was stupid when people would harm themselves, but then all of the sudden that was my reality. I’d have moments of clarity and think, What am I doing? But those moments were rare and far in between.
I saw many therapists. I also did group therapies that were helpful for me to hear about what other people were dealing with. There was a time I found myself in a scary situation of causing myself self-harm and ended up being admitted at UNI, or University Neuropsychiatric Institute, for about five days.
It was rough getting to the point of needing to be hospitalized for depression and self-harm. Self-harm is a scary word and was something unfamiliar to me, but then became a reality. I still can’t believe I fell that hard. I’m not ashamed of it, nor embarrassed. Though I am still shocked today, I believe I am much stronger for going through it. UNI was so helpful and something that I needed. After so many years addressing my physical pain, we were finally addressing what was going on inside of me, mentally. The decision to go there ended up being the best thing I could’ve done for myself and I wished I would’ve gone there earlier. UNI is definitely a great place to go if you need help. They offer a place to stay for free if you feel like you’re not feeling safe. They offer showers, food, and give you the resources you need. It’s so nice they have something available like that, where you can go to get help.
What helped you find strength through those hard times?
Spiritually, I grew up in a Southern Baptist church, and so the church was helpful. Prayer was all I had sometimes. Most of my family members were also really helpful and always there for me.
Mentally, I tried to stay positive throughout, and that helped me get through harder days. Being able to notice the little things and picking out the “good” in my day, got me through. Meditation is great. I still get anxiety over things today, but now I know of ways to cope with it and get through it. Deep breathing helps me. Therapy animals are nice, especially if you live alone.
Physically, exercise has helped. It’s getting better and better as I’m more active. Exercising helps me to have a better body image and feel better about myself, and so I try to stay active. I’ve told myself, even if all I do is yoga, or stretching, I try to move daily. I feel like planning my week out helps me to have something to look forward to, and creates goals to get through the harder days.
How has this experience changed you? Do you feel like you treat people differently now?
To this day I still have flare ups with my RND and still suffer from migraines 3-5 days a week. My strength on these days comes from my inner self and also from those I love. I have grown and become stronger through these experiences: prayer, meditation, exercise, hiking, and photography have all helped me so much. I have an amazing family and wonderful boyfriend who help on my low days.
I definitely treat people differently because I’ve been through a lot. I used to think depression, suicide, and self-harm were kind of “selfish.” I used to think, Why can’t people just be happy? But now I know it doesn’t work that way.
My experiences made me realize that these things can happen to anybody. And now I know it’s important to get help early on if you’re ever recognizing those feelings in yourself. I wish I would’ve known in high school, what I know now. When I was younger I kept a lot of things in, hid some of my problems, and didn’t see it coming. I’ve found out how important it is to talk and be more open about our feelings with other people so we can get help. People just want to help, and I learned that they won’t judge you, but only love you more.
I feel like I’m more understanding and warm, and open to telling my story. It’s definitely scary to open up. A lot of people don’t understand, and my family doesn’t fully understand, but I know it’s important so other people will feel like they can open up if they need to. I like people to hear my story so they know they can tell theirs.
I’ve come out stronger in so many ways: I’m more understanding and helpful, and I believe what people say (whether it’s true or not) because I know how it feels to not feel validated. I like to see the good in people. I hope to always give back. I’ve learned how much I love to help others. I approach people a lot softer until I know their story. We need to treat other people the way we want to be treated because we never know what people are going through. Even though I will live with this for the rest of my life, I’m determined to never let RND own me again.
Interview edited and approved by Brooklyne Douglass prior to release on July 16, 2016