Defiant

 

I remember being a little girl and staring at the sun each time someone told me that looking directly at the sun was bad for your eyes. “You’ll go blind”, they’d say! I wanted to prove them wrong. I could have stared at the sun forever (Don’t try this at home, kids.), wanting to prove to others that they were wrong and I was right. I could prove that staring at the sun wouldn’t cause you to go blind– or so I hoped. I probably should have known then that I wasn’t like most people. That should have been the foreshadowing that indicated my spirit was different from others. I was a fighter- against everything. I fought to win every battle I encountered, whether it be as small as fighting to prove that I was correct (even if I know that I was wrong) or as intimidating as fighting for my life in the ICU. I face my battles. My defiance has proven to go a long way because here I am, defying the odds.

Defiance isn’t a bad quality to own. In fact, I believe my defiance has saved my life. It’s funny to look back on my childhood and notice how much time I spent fighting to prove other people wrong. My earliest memories go back to all the tantrums I’d throw if I didn’t get my way. I hated to lose. My family and friends used to let me win games of Candy Land and Chutes and Ladders because if I didn’t win I’d insist on playing until I was victorious. Losing won’t kill you. I can’t tell you how often I heard those words. Whenever I was scolded for being a sore loser, I was always asked why I couldn’t tolerate letting someone else win. I now understand that my fighting spirit wasn’t all for nothing. We all have something that we are passionate about fighting for- When I think of the words “win” and “lose”, I think of a game of football. There is no tie; you win or you lose. I view my battle with illness the same way. Every day that I get up in the morning and get dressed is another day that I refuse to cave to my circumstances. Like playing football, I have tests and challenges that arise with each spiral of events that come my way. Each fight (football game) leads to situations that become a little more (or a lot more) intense with more at stake. Each game feels a little more important than the one before it. To make it to the bowl games, football teams must first do well in the play-offs. If I make a goal to participate in a 5k it may be a good idea to know that I can at least take the dog for a short walk. Thanks to my defiant ways, I often find myself in situations that I would rather not meet.

After my health began to spiral out of control, I had to fight harder and harder to prove myself. I’d overestimate my abilities because I felt that I was the only one who believed in me. I didn’t understand why friends would attempt to talk me out of an outrageous idea. Did they really doubt my abilities that strongly?  When I look back on past events, I realize that people didn’t doubt me as much as I’d convinced myself that they did. Sometimes I just obsessed over stupid ideas. Ideas that most “normal” people wouldn’t even consider entertaining, much less a medically fragile individual like myself. When I begin to sense a feeling of doubt, my defiance kicks into full gear and I fight. I fight like my life depends on it, because sometimes it does.

Brynn’s 3rd degree black belt testing in 2010 (before health decline)


I reached the rank of 3rd degree black belt in TaeKwonDo as a result of being defiant towards people who said that girls couldn’t be successful martial artists. Girls are weak. All girls do is cry. If you win a sparring match against a male, it’s because he let you win. Guys aren’t supposed to hit girls. It’s funny to hear a girl say she’s going to be a black belt. You fight like a girl. I’ve heard it all. Knowing that people doubted my skill lit a fire inside of me- the desire to prove that I was more than capable of doing anything I set my mind to accomplishing. It was the same fire burning inside me that gave me the strength to keep fighting the condition that continued to progress within my body. It’s the fire that saves my life. My defiance has saved my life.

Learning to walk in leg braces in January 2014 to riding bike in March 2016


I no longer believe that defiance is an unattractive trait to possess. Defiance is a mindset that belongs to warriors. It saves lives, mine included. 


-Brynn 

Looking Back & Moving Forward

I remember waking up as my iPhone hit the floor after sliding off the hotel nightstand. My phone was buzzing like never before due to hundreds of notifications via social media, text messages, and email. Nothing could have prepared me for what I discovered as I rolled out of bed. There were roughly 40-50 texts in my inbox just waiting to be read. “Brynn, you’re going viral!” CNN shared my story with the world. It changed my life in ways that I never could have imagined.

Immediately upon learning that my feature was up on CNN, I panicked. I knew that they story was in the works but had no idea that it would be going up as soon as it did! I was on a mini-vacation with my Mom in Orlando, Florida. We had planned on getting up early to hit the Disney parks, but the buzzing from my phone woke me before the alarm. I scrambled around in a desperate attempt to find a passcode to access the wifi at our hotel. I managed to pull up the story on CNN and ran into my Mom’s room to wake her. I was like a little kid on Christmas morning- running through the suite and bouncing around as I waited to hear my Mom’s thoughts and opinions on the video. We were in agreement that the feature was better than we ever could have hoped! I was introduced to the world as “Bubble Girl- Allergic to Life”.

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Brynn seeing the CNN story for the first time

 

 

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Filming with CNN

 

 

As we made our way around Disney, I was shocked to be recognized by people who had seen my story on the news. I couldn’t manage to part with my phone despite the fact that I was in Disney World. I couldn’t get enough of the supportive emails and messages! We all know that in this day and age, if you put yourself out into the world, you’ll get criticized over thinks you’d never thing about otherwise. Society tries to rip people to shreds simply because they can- And they do it from the anonymity behind a computer screen. I was prepared for the negative comments and sick jokes at my expense. I expected to see remarks from people who claimed to know me personally and follow their claims with false accusations. I told myself that I was prepared. As I began reading the comments underneath the threads that shared my video, I couldn’t believe my eyes. Love. For every negative comment, there were ten positives. It was incredible to see people stick up for me by calling people out for judging. I saw comments from individuals whom I had not spoken with in years that supported me with the sweetest comments. I didn’t grasp how many people cared enough to stay updated until the CNN story went up. Old acquaintances were answering questions being asked by those who were just learning about me. Acquaintances that I didn’t even know cared anymore were able to correctly answer and acknowledge confused comments from others. People that I thought didn’t like me anymore were backing me up and then boosting me up after acknowledging something negative. I was blown away with the outpouring love!

As we were waiting in line for a ride at Disney World, I received an email that will forever stand out in my mind. The email that helped myself confirm that sharing my story was the right choice (for me). I’ll never forget the emotions that hit me as I read an email from a frazzled mother. For years, this woman’s daughter struggled with the same symptoms I’ve experienced. The mother confided that she believed her daughter had been making up the symptoms in a desperate attempt to get out of going to school and other responsibilities. Doctors couldn’t find any obvious problems in the varied tests, so they attributed her symptoms to anxiety. When this mother saw my story, her heart dropped. Her daughter was telling the truth. My story led a mother to believing her child and a fellow warrior was validated of her struggles. I’ll never forget reading that email as it was the first of hundreds that made me grasp that my voice was not only being heard, but being valued to others. It turns out that our voices can be as loud -or as quiet- as we desire. I’ve found the power of my voice and I plan on using it.

I look around and can’t believe where I am today. I never would have guessed that in less than a year, I’d reach millions of people. My story was viewed over 5 million times (on YouTube alone) in less than a year. Wow. I had only hoped that I would be able to help a handful of people who were silently suffering… I never would have guessed that I’d receive hundreds of emails thanking me for sharing my story. To know that I truly made a difference to fellow fighters means the world to me.

Whenever I am asked how I’m doing, it’s hard to say because things are always changing. One day I’m doing really well and able to safely eat foods that used to cause Anaphylaxis, another I’m in the hospital recovering from surgeries and serious infection. Sometimes I am physically able to walk a mile around the neighborhood with my dogs and other days I can’t even stand up by myself. Today I went to Costco with my Mom and ended up being pushed around in the shopping cart. I thought I’d be okay to go into the story without my wheelchair, and after we’d been in for a few minutes my Mom took one good look at me and asked if I would like to sit/ride in the shopping cart. As I’m sure you can imagine, I got lots of weird looks being a 22 year old being pushed around in a cart by Mommy. I’m used to people staring at me. I’m just different and that’s okay. I take it day by day and roll with the punches as they come.

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Shopping cart can double as a wheelchair!

 

 

Thank you for following me on this journey. Thank you for believing in me.

-Brynn