Rolling with the Punches

“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.

Thankful Thursday- Happy Thanksgiving!

Today I am thankful for all the things that I normally hate. I am thankful for my feeding tube, my central line (port), my wheelchair, and even my disease. I am thankful for modern medicine just because I simply wouldn’t be alive without it. Don’t get me wrong, I hate the fact that I have to rely on a feeding tube and wheelchair. As much as I hate all the medical equipment I require just to function, I am thankful to have it. Life without wheelchairs & feeding tubes could be impossible to those who rely on them. My quality of life has drastically improved since getting my own custom wheelchair & undergoing the surgeries to have the feeding tube and port placed. I had no idea that becoming a Tubie would soon lead me to meeting other teens and young adults who would become some of my best friends. It is crazy to realize that had I been born free of illnesses I never would have met my best friends. I can’t imagine doing life without them! The friends that I have made make it worth having to fight this monster disease- With you guys by my side, I know that we will never have to fight alone. I am thankful for my disease because it has led me to incredible life experiences that never would have happened to me if I had been born healthy. My disease has helped me find my voice and because of that, I have been able to help other people who are living with similar illnesses. I have huge plans for my future. There will always be difficult times but at the end of the day, I know that I am exactly where I’m supposed to be.

Above all, I am thankful for the doctors, nurses, and CNA’s who will continue to work saving lives every day over this holiday season. Their jobs do not get to skip a day just because it’s a holiday- there are always people who need help. Don’t forget to thank each and every person in the medical field who will be working over the holidays this season!

Thank you to everyone who has supported me from day one. I love you all! Happy Holidays!

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Surviving Summer

“I am a survivor- a living example of what a person can go through and survive.”- Elizabeth Taylor”

As summer of 2014 comes to a close, I can’t say that I will miss it. This summer has by far been one of the most challenging times of my life, but I survived. I have no idea how I would have made it this far without my amazing family and friends. The last time I updated, I was in the hospital. I ended up spending eight weeks inpatient and seven of those weeks were spent in the ICU. I felt like the hospital stay from hell would never end, but I SURVIVED. I will never forget the day that I was discharged from that crazy hospital admission; when suddenly my outlook on life changed completely. I remember complaining about the Carolina heat as I climbed from my wheelchair to the inside of our car. Within seconds of complaining about the sun, I wished that I could have taken that comment back. I was lucky to feel the sun on my skin. I realized that other patients who had been on the same floor of the hospital may not ever have the opportunity to feel the sun again, and in that moment I decided to enjoy everything for them. I hoped that if the roles had been switched, one of the other patients would have made the decision to enjoy every moment of their lives (even the bad ones) for me.

My life is much like a war zone. One day I am confidently cruising down a road that leads to freedom, and the next I realize that I’ve just detonated a bomb that was hidden in my path. As the area surrounding me goes up in flames, nearby witnesses stumble around helplessly because they have no idea how to save me. I start to panic when my brain processes that this could be the last mission of my life. At the very last moment, a brave soul decides to take a risk and manages to pull me out of the debris. I make it out alive and escape the scene with my body intact. If it weren’t for a few scars, you would have no idea that I had just survived a major catastrophe.

Just as I started to think that I couldn’t keep fighting any longer, an amazing doctor went completely out of his way to help me. I’m so thankful for the doctors, nurses, family, and friends that kept me going this summer. It has been a rough road, but I’ve learned so much along the way. Looking back on everything that has happened, I can’t help but to be anything other than happy. I have amazing family and friends who never fail to make me smile. I’m making exciting plans for the future and know that I have a bright life ahead of me. I’m just happy to be here.

– Survivor of Summer 2014

Fight or Flight?

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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

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

“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

“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.

Unmasking Mast Cell Disease: An Interview With a Fighter and Survivor

The Other Courtney

I saw her photos on Instagram and was immediately drawn to them. We had a lot in common, it seemed. We both owned chocolate labradoodles, had anaphylactic allergies, and lived in the Carolinas. The more I got to “know” Brynn Duncan, however, I realized that while we did have things in common, our lives were nowhere near similar.

Her photos were captivating and touching

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But equally heartbreaking

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I started feeling sympathy for this girl I had never actually met, and only interacted with in the form of “likes” and Instagram comments. The more I read about her constant anaphylactic reactions, hospital visits, feeding tubes, and seizures, the more curious I became about what type of illness she was dealing with.  As someone who has anaphylactic allergies and knows the physical, mental, and emotional toll they take on a person, I could hardly comprehend a disease that causes spontaneous anaphylaxis, sometimes…

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