Opportunities

“I don’t believe that old cliché that good things come to those who wait. I think good things come to people who want something so bad they can’t sit still.” -Ashton Kutcher

I hate it when people say that they “never get good opportunities” or “oh, if only I had been given the opportunity to”… For the most part, good opportunities don’t just fall into your lap. You have to get up and hunt them down yourselves. Opportunities are always out there waiting — some of us just have to search a little harder than others. On August 11th of 2013, I was one of the millions of kids sitting in front of the television set as Ashton Kutcher gave his monumental acceptance speech at the Teen Choice Awards. If I’m being honest, I never really paid much attention to acceptance speeches at award shows — I was just tuning in to see the musical performances. I often made it a priority to be sure not to miss major televised events because I didn’t want to be that girl to walk into a conversation and pretend I knew every detail about a subject when in reality, I had no idea what was being discussed. The thought of being unable to contribute to a conversation made me uncomfortable. While I am relieved to be able to say that I’ve outgrown the petty fears that once plagued my mind, I am thankful that they led me to hearing Ashton’s speech that night. If it had not been so important to me to be able to discuss the latest happenings on Twitter, I would have missed it.

Let’s be real — society doesn’t seem to expect much when it comes to acceptance speeches these days. I guess that’s why it’s considered a “big deal” when someone says something that is not only worth hearing, but worth sharing with all your friends on social media, too. Usually acceptance speeches consist of a bunch of “thank you”s and rambling off a long list of names before being cut-off by music as a cue to exit the stage. When Ashton (or as we’ve learned, Chris) took the podium and began to talk about opportunities and “being sexy”, he pulled my attention away from my phone and shifted my focus to the message that he gave us that night. For as long as I can remember, I can recall hearing celebrities and other public figures stress to their audiences that it is possible to turn your dreams into realities if you’re willing to fight for them. While there will always be people out there who are quick to shoot down the idea that “anything is possible”, there are even more people who are fighting to turn their desires into realities. I happen to fall into the category of people who are crazy enough to believe that we all hold the power to accomplish anything. Well, almost anything.

It’s obvious that there will always be circumstances that we have don’t have much control over, except for how we respond to those unforeseeable circumstances. I’d love it if I could cure illness by the snap of my fingers, but I haven’t acquired that skill yet. I can, however, spread the word about invisible illnesses. As my story makes its way around the internet, I am finally realizing that the hopes and dreams that I’ve had for as long as I can remember, are in the process of coming true. Here’s the catch- I never wanted it to happen this way.

As a little girl, when asked what I wanted to be when I grew up, I’d simply laugh and respond with “Famous”! I still have flashbacks to singing and dancing around the living room when I was five. I can remember my mom asking me to entertain my baby brother while she finished cooking dinner — she would put him in his high-chair and I would skip around the table singing whatever song we learned in kindergarten that day. I often talked about how I wanted to be on TV. I wanted to tell stories. As soon as I learned how to read and write, I wrote plays & skits. I always made sure to give myself the lead role, and then I would “direct” my siblings and friends to “Do what I say!!” I’d plan out every detail of my scenes — right down to the creepy music that foreshadowed Little Red Riding Hood was in danger. I had my future planned out beautifully; I could write stories with the intent to have them later turned into movies. I’d be the director as well as one of the leading actors. The funny thing is, I never once questioned my plans for the future. I had no idea that the story that was going to put my name on the radar would be my own: My battle against chronic illness.

For a while, I was bitter over the idea that my future had been ruined because of my multiple illnesses. I thought that surely, any opportunities out there would be taken from me because I was sick. It was around this time that I thought back to Ashton Kutcher’s speech about opportunities looking like hard work. Why should one factor of my life control every part of my future? Being sick makes it much more difficult to get anything accomplished, but that doesn’t mean that it isn’t doable. Illness has taken a lot away from me, but I do have one quality that has only grown stronger- my voice. I am finally being heard. As my health continued to decline, I became passionate about raising awareness for myself and others who are living with invisible illnesses. What was originally one story interview to raise awareness became the stepping stone that opened up my eyes to even more opportunities. On May 1st, 2015, my life changed when I woke up to discover that my story had made headlines around the world thanks to CNN’s feature about me; Brynn Duncan, the girl allergic to life, Bubble Girl.

If there is one lesson that I’ve learned in the amount of time that has gone by since sharing my story, it’s this — We have to stop waiting for tomorrow. For months, I’ve been so focused on what message I wanted to share with everyone that I failed to realize that the clock is ticking. I’ve had so many opportunities thrown my way since sharing my story. I became so overwhelmed and caught up over which path to take that I ended up passing them by because I was waiting for “tomorrow” (to feel better). I’ve finally realized that just as a tomorrow isn’t promised, I can’t keep putting the brakes on opportunities when I’m struggling with my health. We have to stop wishing for better tomorrows. We have to get up and fight for them.

Opening up about my health struggle to such a large audience has been one of the most difficult things I have ever done in my life, yet the most rewarding experience at the same time. I knew that sharing my story would be difficult, but I had no idea that it would end up being one of the best decisions that I’d ever make. One opportunity at a time, I am using my voice to help anyone who has ever struggled know that they’re not alone. It hasn’t been an easy road. This illness has knocked me down far more times than I’ll ever be able to count, but I know that I will always have people around to pick me up when I’m down. Do you want to know the best part of the story? I’m just getting started.

I AM NOT INVISIBLE

I can easily say that last night was the most fun that I have had in years. I owe it all to the amazing Hunter Hayes. Last night, my friend Michaela and I attended a show from Hunter’s “We’re Not Invisible Tour”.  I have always had a lot of respect for Hunter as an artist, but after last night, words can’t even begin to express how much I admire him. With Michaela by my side, the night was perfect.

When I first heard his song, “Invisible”, I loved it.  I related to it so much, that I felt like it could have been written specifically for me. I’ve always been different. It was extremely difficult for me to relate to most people at school. I was very sick for all of my teenage years, and it forced me to grow up faster than everyone else. For the first five or six years, I was able to somewhat cover up my illness. Everything changed in 2012. After seven or eight years of searching for answers, I was diagnosed with a form of mast cell disease called “Mast Cell Activation Syndrome” as well as a form of autonomic dysfunction known as “POTS”. I had 30 hospital admissions that year. I never imagined that I would have to fight so hard for my life.

Earlier this year, I was laying in the ICU listening to “Invisible” on repeat. I remember looking at myself in the mirror and shaking my head as I realized that tubes and machines were keeping me alive. For months, I would just stare at my legs and plead for them to let me walk again. All I wanted was to be normal. I was tired of everyone staring at me. People were so busy staring at feeding tubes on my face, lines, and my “Bionic Legs” (leg braces) that I felt like they couldn’t see me. Hunter’s song helped me through all of those difficult times.

Michaela and I were able to meet Hunter before his show last night, and I have to say that he is one of the most genuine people that I have ever had the privilege of meeting. We got to tell him how much we loved his music and were able to tell him our story. We told him about the “Teens with Feeding Tubes 2014” video that Michaela made- Together we decided that “Invisible” would be the perfect music for the video. He loved it when we told him that the video was put to his song and we could tell that it truly meant a lot to him. He’s such a nice fella!

Being the advocates that we are, we were THRILLED to be filmed before the show. We were asked, “What does ‘Invisible’ mean to you?” After expressing our love for the song, we of course took the opportunity to raise awareness for ourselves. Michaela told them about our “invisible illnesses” and we followed that with showing them all of the pumps and lines we’re attached to that keep us alive. We love to spread awareness every chance we get!

I will never forget the feeling that overcame me when Hunter performed “Invisible” last night. Michaela looked over to me as we were belting out the lyrics and I became overwhelmed with happiness. I looked down and realized that I was standing without help and at the same time, I was wearing my 30lbs backpack that contained the three different pumps that have slowly given me my freedom back. The best feeling though, was looking to my side and seeing Michaela. We’ve been through so much in the short years that we have known each other. I have no idea where I would be without her. (I would not have lasted 24 hours with my first feeding tube if she had not been there telling me that it would get better. I almost pulled the NG tube out of my nose two hours after it was placed, but Michaela and my other “tubie” friends were there to talk me through the difficult days.) At the concert last night, we weren’t “the sick girls”- We were just Brynn and Michaela.  We are not invisible.

Thank you again to Hunter Hayes for giving us such an amazing night. I hope that I get to come to another show soon, and that one day Hunter will see this and know how much fun we had at the concert! To any of you who are going through difficult times:

“Hear me out, there’s so much more to life than what you’re feeling now. Someday you’ll look back on all these days and all this pain is gonna be invisible.”

-Brynn

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