Tag Archives: Invisible illness

Opportunities

Posted on by Standard Reply

“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.

Rare

Posted on by Standard 17

“There is nothing more rare, nor more beautiful, than a woman being unapologetically herself; comfortable in her perfect imperfection. To me, that is the true essence of beauty.” -Dr. Steve Maraboli

What goes around comes around. I truly believe that if you put good out into the world, it will come back to you in one way or another. It can be so difficult to go day by day and feel like nothing good ever comes to you. Nothing ever happens as quickly as we would like, but I do believe that our individual challenges have ways of working themselves out. Whether you are religious or not, no matter what you believe in, I believe that in the end everything will fall into place as it should- that is, if we have the patience to wait long enough. I’ve always somehow ended up in the right place at the right time, and time and time again I realize that everything happens for a reason.

The whole time that I’ve been sick, I have thought to myself, “What would I say if I had five minutes left to live and knew that every person I’ve crossed paths with could hear my thoughts?” The thinking in the shower, the thoughts that go through my head as I strum my guitar- My realizations that despite everything, I have ended up exactly where I am supposed to be.

You don’t want to live life constantly searching for the “better tomorrow’s”. If you live each day only thinking about what you would do if the day had been better to you, before you know it, you will discover that life has passed you by. If you make it a point to find just one good thing that happened, maybe you will discover that there really is light at the end of your dark tunnel.

One of the parts that I appreciate the most about living with a chronic illness and having so many close friends with chronic illnesses- I don’t leave words left unsaid. I tell my friends that I love them every chance I get because in the back of my mind I always ask myself if I would be happy with my words if they were to be the last words to a dear friend.

I am not walking the path that I would have chosen for myself. I am a rare breed of human who can’t be found just anywhere. I smile in the face of a challenge and don’t fear diversity the way that most women my age do. My body is flawed in more ways than can be counted, but I no longer try and hide behind my differences. At the end of the day, all anyone wants is to find happiness in all the dark shadows of the world. If my little voice can play a part in paving the way for all of my fellow rare warriors, I know that each of my days are playing out exactly as they should. I will never fit in with the cookie cutter persona that our society expects women to uphold, but for the first time in my life, I am perfectly okay with that.IMG_1914

Happy Rare Disease Day!

Circumstances

Posted on by Standard 3

“People are always blaming their circumstances for what they are. I don’t believe in circumstances. The people who get on in this world are the people who get up and look for the circumstances they want, and if they can’t find them, make them.” -G.B. Shaw

“If you want something bad enough, you can make it happen.” We’ve all heard it. Some of us have grown up around the statement, while others have had it thrown at them to dismiss a complaint over various struggles and frustrations in life. It’s such a simple sentence, yet one that can have a powerful effect on the people who hear it. I spent countless hours tossing this statement around in my head before I finally came to the conclusion that everyone views it differently. Is it just meant to be a kind word of encouragement or a witty remark to silence another individual’s self-pity? Many people view it as a positive way to uplift someone in a difficult situation while others strictly believe that it’s just a harsh dismissal. It all depends on how you decide to process it- You can choose to use it in a positive way or you can put a negative spin on it if you so desire. Life’s circumstances are just the same; you can find ways to better yourself in difficult positions or you can choose to dwell on them.

For as long as I can remember, my parents have encouraged my siblings and I to follow our dreams and do whatever we desired with our lives. It has never mattered to them whether we grew up to become successful entrepreneurs or if one of us were to decide that we wanted to pursue a music career- as long as we’re happy with ourselves, they will be happy too. I always thought that I would be doing huge things with my life by now. I had all kinds of outrageous plans for my future-self. When asked what I wanted to be when I grew up, my five year old self would have simply responded with “Famous”! As I got older, my answers became more specific. At nine or ten years old, I had convinced myself (and everyone around me) that I would grow up to work with NASA. By the time I was in high school, I knew that I wanted to become a doctor. As my circumstances changed, my plans for the life ahead of me did the same.

I never in a million years would have guessed that I would be here- advocating for my rare disease. Our circumstances are always changing, in both ways good and bad. No matter how much we plan ahead and prepare, we come face to face with struggles that we never could have seen coming. Every day, I set new goals for myself. I know that people probably see my goals as completely outrageous, but I’m okay with that. When I do prove my potential, it will be the sweetest victory.

I challenge all of you to set a goal that nobody would expect you to accomplish. Overcome your circumstances. Think of something that scares you to death. Maybe you’ve always wanted to be an airplane pilot, or want to go out of your comfort zone and share your life story in hopes of encouraging others? Be spontaneous. When you finally fly solo, you may find it to be the best thing that has ever happened to you.

 

The Comeback Girl- 21 Years in the Making

Posted on by Standard 4

“The two most important days in your life are the day you are born and the day you find out why.” -Mark Twain

2014 has taught me more about myself than I ever would have thought possible. This year I learned how to fight harder than I ever have before. Because of my acquired fighting skills, I reached my twenty-first birthday. After the year I’ve had, it felt like my 21st birthday would never get here! This year has not been easy. In just 365 days I have endured multiple surgeries, spent months in the ICU, learned how to walk with leg braces, I’ve been through four different central lines, I became one of the first patients in the country to be placed on a constant IV Benadryl pump, went through four different types of feeding tubes, added another diagnosis to the list and became the comeback girl.

I’ve always been vocal about the fact that I believe I was chosen to fight these monster illnesses for a reason. In this day and age, there are hundreds of crippling illnesses that need better treatments and the only way to spread awareness is to talk about them. Embarrassing or not, who is going to raise awareness for my disease if I don’t do it myself? The best decision I made in 2014 was starting Brynn’s Bubble. I had no idea how much I would gain from opening up about my invisible illnesses. After my story was shared on the Huffington Post, I began receiving emails from complete strangers who told me that by speaking out about Mast Cell Disease I saved their lives. I was contacted by mothers who told me that if they had not stumbled upon my story, their children likely would have gone untreated for another ten years just as I did. Other individuals thanked me for helping them find the cause behind deadly allergic reactions. Knowing that my voice has helped others is the most rewarding feeling in the world and it makes all of my struggles over the years worth it. I have no idea how to even begin to thank all of you for the overwhelming amount of support that you’ve given me.

Sometimes we are handed situations that seem impossible to overcome. Life is unpredictable and we never know what will happen from one day to another, but I can promise you that it gets better one way or another. I never imagined that I would be able to make a comeback. At the beginning of 2014 I couldn’t even stand without assistance from a walker or leg braces- Today I can walk up the stairs without thinking twice about it. I’ve attended various concerts over the past few months and was able to dance the night away at each one. (Of course I had to pay for it the next day, but IT WAS WORTH IT!) Thanks to IVIG treatments, I am now able to eat foods that once caused Anaphylaxis. I’m not anywhere close to being cured, but I am so much better than I have been in the past. To anyone out there who may be struggling- Never lose hope. Don’t give up on yourself. Allow yourself to keep striving for the things you wish to accomplish and don’t lose sight of them. Life may be confusing now, but one day it will all make sense.

I’m going to make 2015 my year. I will attempt things that I’ve always wanted to try. I refuse to let these illnesses control me any more than they already have. I will keep working hard so that I can finally get my high school diploma. I will face my biggest fears. Maybe this will be the year that I finally get to meet Ellen DeGeneres and see a taping of her show. Maybe this will be the year of medical breakthroughs. I don’t know what my 21st year of life has in store for me, but I am determined to fight harder than ever to make sure that it is the best year yet. Mast Cell Disease, Dysautonomia/POTS, Ehlers-Danlos Syndrome, & Gastroparesis- watch out because Brynn Duncan is making a comeback.

I AM NOT INVISIBLE

Posted on by Standard 3

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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