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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