Tag Archives: chronic 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.

 

Rolling with the Punches

Posted on by Standard Reply

“It ain’t about how hard you hit: it’s about how hard you can get hit. And keep moving forward. It’s how much you can take. And keep moving forward. That’s how winning is done.” -Rocky Balboa

Life is about learning to roll with the punches. When I was nine years old, my sister and I enrolled at a TaeKwonDo Academy. At the beginning of each class, we would bow in and recite the tenets of TaeKwonDo; Honor, courtesy, integrity, perseverance, self-control, courage, community, strength, humility, and knowledge. In my first week of training we learned about perseverance and talked about setting goals. Most importantly, we learned that perseverance would be the key to achieving any goal that we wished to accomplish. Many of the white belts in my class set a goal to break their first board or just wished to pass the first testing to get their yellow belts. The very first goal that I made in TaeKwonDo was to one day become a 3rd degree black belt- the same rank as my instructor.

At age eleven, I became the first black belt in the Duncan family. I will never forget seeing my belt for the first time. There is no better feeling than running your fingers over the belt with your name embroidered in gold thread; vindication that I could be a successful female martial artist after so many kids told me that I wasn’t good enough.

About seven years into my training, I became seriously ill. As time passed, my health continued to spiral out of control. It was very difficult for me to attend school, much less TaeKwonDo. I was ranked as a 2nd degree black belt and couldn’t bear to think about losing reach of a goal that I set when I was nine years old, so I fought. Eight years into my training, at the age of seventeen, I passed the rigorous testing and earned the rank of 3rd degree black belt. I reached the goal that changed my life forever.

The lessons that I learned in my eight years of martial arts training made a bigger impact on my life than any of the lessons that I was taught at public school. Had I not been involved in TaeKwonDo, I honestly don’t know how I would have made it this far in life while being haunted by a chronic illness. TaeKwonDo taught me so much more than how to fight off an attacker; it taught me how to live. I earned my black belt by living by the tenets of TaeKwonDo. In all reality, being a black belt is nothing more than a state of mind.

For ten years now, I have had a poem by Master Karen Eden plastered on my wall as a constant reminder to myself that I am not (nor will I ever be) the average woman. I am a martial artist.

“I Am a Martial Artist”

I am a martial artist.

I see through different eyes.

I see a bigger picture

when others see grey skies.

Though many can’t conceive it,

I stand… facing the wind.

My bravery, not from fighting,

but from my strength within.

I am a martial artist.

I’ll walk the extra mile.

Not because I have to,

but because it is worth my while.

I know that I am different,

when I stand on a crowded street.

I know the fullness of winning,

I’ve tasted the cup of defeat.

I am a martial artist.

They say I walk with ease.

Though trained for bodily harm,

my intentions are for peace.

The world may come and go,

but a different path I’ll choose.

A path I will not stray from,

no matter win or lose.

-Karen Eden

Master Eden’s words still describe my life now just as much as they did before I had to stop actively training in TaeKwonDo. I strongly believe that this is because my martial arts training shaped me into the person I am today. I will be forever grateful to each and every instructor who has taught me along the way. Because of you, I have learned how to roll with the punches that life throws at me.

Fight or Flight?

Posted on by Standard 11

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I always try my best to describe my life in a way that can be understood by others without sounding so depressing, but the events that have taken place over the past month cannot be sugarcoated. My battle against mast cell disease has been terrifying.

I am currently on week three of this hospital admission- with the majority of this time being spent in the ICU. At this point, all the days start to run together.

I’ve been waiting about posting an update until I had something good to say, but the truth is that this disease is completely kicking my butt right now. While I have had improvements in some areas, I am still having seizures and we cannot seem to get my anaphylaxis and other episodes under control. As of today, I have officially been on chemo for one week. 2014 has proven to be a terrifying year for my family. There is a war going on inside my body and that will never stop being scary, but I can promise you that I’m not going down without a fight. I also wanted to take this opportunity to thank all of you for the endless amount of support that you have given me throughout this battle. It makes me so happy to know that the day I kick Mast Cell Disease in the @$$, I will have all of you cheering me on just as you have from the beginning. I couldn’t fight this battle without you and I love you all more than words can say.

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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Starting Over

Posted on by Standard 2

“For what it’s worth: it’s never too late or, in my case, too early to be whoever you want to be. There’s no time limit, stop whenever you want. You can change or stay the same, there are no rules to this thing. We can make the best or the worst of it. I hope you make the best of it. And I hope you see things that startle you. I hope you feel things you never felt before. I hope you meet people with a different point of view. I hope you live a life that you’re proud of. If you find that you’re not, I hope you have the strength to start all over again.” – F. Scott Fitzgerald

            Two years ago, I decided to start over. I realized that I wasn’t as satisfied with myself as I knew that I could and should be. How does one completely change everything about themselves?  The hardest part of re-evaluating my life was deciding how much of me could stay the same and figuring out what needed to change. You could almost compare it to creating blueprints… The blueprints to life.

I think of it like this:

            Imagine that after years of saving up and making plans, you finally are able to build your dream home. After a few months of enjoying your perfect home, your house goes up in flames due to an unexpected electrical fire. You can’t bear to accept the fact that you have lost everything you had worked so hard for and put all of your time and energy into. As the reality hits you that you’ve lost all of your prized possessions, you almost wish that you had never finished building your dream house- You had just enough time to get used to living in your dream home to forget how much you appreciated it, and it just slipped away right in front of you. After you’ve had time to take in what has happened, you decide that it is time to start building a new home. You could spend all of your time dwelling on the fact that you don’t have the budget to build a fancy patio like you had in the former home, but you know that it won’t do any good. You decide to find excitement in the fact that your new house will have new features that weren’t available to you in your old home and that is always exciting! After accepting that your old home is gone, you can look forward to all the things your new house will offer- It isn’t your dream home, but you can make the best of it.

Re-building my life has been much like re-building your dream home.

            I was so happy with everything that I had accomplished before I was diagnosed. I had a lot of friends and I was proud of everything that I had done before I became sick. My body underwent an “unexpected electrical fire” and I had to start over from scratch- finding the things that were most important to me and making the best out of every situation. My life isn’t what I would have ever dreamed of living, but I choose to be happy.

Living with Mast Cell Disease- Heroes

Posted on by Standard 3

“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.” – Christopher Reeve

            Everywhere we go, we are surrounded by heroes. A hero can be anyone. Being a hero means that you’ve been able to make a difference in someone else’s life. Whether you’ve pulled someone from a burning building or were the only reason that a person smiled today, you’re a hero. Then you have the superheroes, the people that make an unbelievable difference in society. Christopher Reeve, the original Superman, will always be a legend. Most people know him for his cape and tights, but in my eyes he’s a superhero because of a completely different battle – the one that was going on inside his body. Christopher Reeve fought Mastocytosis, a devastating, incurable, and life-threatening disease. The fact that Reeve was able to be Superman while he had a war going on inside his own body definitely qualifies him as a superhero. Only the toughest can battle mast cell disease; I know this because I am fighting it too.

Mast cell disease has definitely made a huge impact on my life. It has taken a lot away from me, but at the same time, I’ve gained from it. Once the disease took over, I developed a whole new perspective on life. It brought me back to reality. You never truly understand the complexity of life until something happens and reality slaps you in the face. It’s probably safe to say that the majority of our society is completely oblivious to everything going on in our world. We as a society take so much for granted and rarely spend time thinking about how our lives could be drastically changed within a split second. You or a loved one could be involved in a serious accident, have your lives forever changed by a natural disaster, or like me, be given a life-altering diagnosis. After I was diagnosed, I felt like everything that I had previously worked so hard to achieve was thrown away. I was a 3rd degree black belt in TaeKwonDo and very close to becoming an instructor at the TaeKwonDo academy. I had good grades in school with plans to go to a university and later pursue a career in the medical field. I never thought that I would later be on so many medications that I couldn’t think for myself or that I would have to rely on family members to carry me around the house because I couldn’t stand on my own. Life as I knew it was over, but I didn’t know at the time that maybe this would be a good thing.

“The reason people find it so hard to be happy is that they always see the past better than it was, the present worse than it is, and the future less resolved than it will be.” – Marcel Pagnol

            It seemed like my life was over. I couldn’t understand why this had to happen to ME. Why did I have to be diagnosed with some bizarre and unheard of disease? Couldn’t I have been diagnosed with a disease that society was familiar with and knew about instead of this one? After going months with these thoughts running through my head, I finally realized that maybe all of this really did happen to me for a reason. As Oprah Winfrey would say, I had my “Aha!” moment.

Sometimes it’s hard for me to understand why I have to battle mast cell disease and the other chronic illnesses that come along with it. Why can’t I be normal? I’ve asked myself this question a thousand times, and I’ve finally realized that there isn’t really anything special about normalcy. Every hero has something special about them that nobody else possesses; no hero is normal. Maybe, just maybe, I am supposed to be another hero.