Dear Donor…

Dear Anonymous,

I’ve spent the past several weeks trying to figure out how I could ever fully thank you for the generous gift- your anonymous donation of $25,000.

I was sitting on the couch trying to distract myself from a particularly rough day when my phone began to ring. I had no interest in talking to anyone, but when I looked at the caller ID and saw who was calling, I quickly picked up the phone on the last ring. It was Beverly Eye – the precious mother of my best friend who passed away in April of 2017. Betsy was just 22 years old.

After Betsy passed, Beverly came up with an idea to honor her daughter in a way that would benefit others. The moment I heard her idea to raise money to bring another dog to our hospital system, I was determined to see her vision become reality. The therapy dogs played a big role in Betsy’s life as she spent extended amounts of time in the children’s hospital. I couldn’t think of a more perfect way to honor her than to strive for another therapy dog in Betsy’s name – “Betsy’s Dog”, as we called it. With a hefty price tag of $25k for a trained therapy dog, we knew our work was cut out for us.

Betsy was known for being the life of the party. The moment she entered a room, it came alive. This girl could transform the most dreadful of places into the most entertaining atmosphere – and she still managed to do it when she was sick, stuck in a hospital bed. When we began our mission to bring Betsy’s dog to Greenville Children’s Hospital, I knew it was perfect. The four-legged heroes have the remarkable ability to lighten the atmosphere and instantly diminish the anxieties of everyone around.

When I answered the phone and heard Bev in tears, my heart skipped a beat. “You’re never going to believe this, Brynn! Someone has come forward and anonymously donated the full amount… They saw your posts… and now we can bring the 4th facility dog… Betsy’s Dog…”, her voice broke. I felt sure that I had misunderstood, so I asked her to repeat what she’d just told me. When she repeated that someone had anonymously donated the $25k we needed, I sprang up from the couch. That phone call changed everything.

I will forever remember the day we finally got to share the news with everyone at the children’s hospital. The big reveal day was a day that none of us will forget. If only everyone could have experienced the emotions in that room… The atmosphere was unlike anything I’ve ever experienced. We were all feeding off the energy in the hospital lobby as Betsy’s mother surprised everyone with the announcement that someone had come forward and anonymously donated the full amount of funding needed to bring Betsy’s dog home. It was tougher than I thought it would be to keep my composure long enough to get through my little speech! I struggled to avoid making eye contact with all of those who had come to find out why we were camped out in the hospital lobby in company of cameras from a local news station. The expressions on the faces of those who had gathered ranged from wide eyes and open jaws, to tears. There were a lot of tears! One part of the reveal stands out to me more than others… As Betsy’s mother fought to maintain her composure enough to deliver the exciting news, one of the therapy dogs suddenly went wild. Those who had been in tears, erupted into laughter as the therapy dog started bouncing around with her tongue hanging out of her mouth. That moment was the perfect example of just how much we can benefit from these four-legged heroes! I mouthed, “Betsy..” and later joked that Betsy must’ve been there in spirit harassing  the dog to give us all a much needed laugh to lighten the mood. We could agree that it was totally something Betsy would do. In that moment, I felt everything come together. Every person in that room witnessed the dog’s ability to lighten the mood when we didn’t even know to expect it.

Thanks to you, our secret donor, hundreds of patients will benefit from Betsy’s dog. When you generously donated that $25,000 to help out, it gave us all so much hope. I don’t know if I will ever learn your identity, but I did receive your letter. Initially, I couldn’t wrap my mind around the concept that someone would do something so drastic and kind, expecting nothing in return. It all came full circle when I read your letter and learned one detail about you – You have had your own battle with your health. Your reveal of your struggle with chronic illness and mention of the Spoonie/chronic illness community told me everything I needed to know. A long time ago, I discovered that the most selfless people I’ve encountered are my friends who happen to live with chronic illness. (Betsy was one of them!) I am humbled to hear that you were impacted by our willingness to share about life with invisible illness and it was that which compelled you to give back. It can be difficult to show everyone the reality behind these conditions and just how much they affect us on a day to day basis. However, you have just shown us that being vocal about our circumstances is worth it- it’s crazy to think that a simple social media post was the catalyst responsible for bringing so much good to my community. Thank you for everything! I wish you luck in your own battle and I hope lots of good comes your way. You certainly deserve it.



Risky Business

Today’s trip to the hospital started off just as any other visit- My Mom and I circled the parking garage looking for a vacant handicapped parking spot. We ended up having to park on the roof of the garage due to all the handicapped spaces being occupied. After unloading the car and packing all of my medications and belongings into the bag underneath my wheelchair, we made our way to the hospital entrance. Outlaws were sneaking around with their lit cigarettes as they tried to avoid being caught by someone who would enforce the rules. Smoking is banned on hospital grounds but people do it anyway. Mom mumbled about the delinquents who were sucking on their cancer sticks and I held my breath until we were in the clear. It’s always tough for me to hold my tongue when I’m put in danger by individuals who blatantly ignore the law. My Mom’s comments made me laugh as we anxiously waited for the elevator doors to open. The smell of smoke was lingering in the elevator, but I at least felt safer than I did while people were actively smoking in front of the entrance. I tried to distract myself by taking silly Snapchat selfies as I declared to my friends that I was preparing for my anesthesia nap. I tried to get my Mom to smile for a few selfies as she pushed my wheelchair to the door, but she wasn’t in the mood. We were both nervously anticipating what the outcome of today’s events would become.

As Mom wheeled me into the business office to check in, my face lit up when I saw that a familiar face was sitting at the desk. “Look Brynn, it’s your friend!” Mr. Alex spotted us the second we came around the corner. It made me happy to see him. Alex always makes the tense environment less stressful with his light-hearted jokes and laid back demeanor. He’s checked me in for countless surgeries, procedures, and hospital admissions over the years that I’ve been a patient within this hospital system. He knows that I’m a Germaphobe and always takes a moment to wipe down/sanitize the stylus for the digital signature as well as the pen and clipboard when it’s time for me to sign and initial the HIPPA forms. No matter how dreadful I’m feeling, I know that I can always count on Alex to make me smile and laugh. Whenever you think of who you’ll encounter in a hospital setting, I think people often forget about those like Mr. Alex who work in the business office- He isn’t working as a doctor or nurse, but his role in my visits to the hospital has made an equally as important impact throughout my experiences here. A hospital bracelet is snapped onto my wrist and we make the trek to Interventional Radiology.

We sit down in the waiting room as we wait to be called back and prepped for anesthesia. “Bryan Duncan?!”, the nurse calls out. It always makes me chuckle when my name is mispronounced- just about everyone who works at this hospital knows me. We explained that my name was in fact “Brynn- Rhymes with Lynn” and she felt silly for pronouncing it incorrectly. I get that a lot, so it doesn’t bother me. Sometimes my friends will even call me Bryan to poke fun at those who can’t seem to ever say my name correctly. After making small talk with the nurse, we wheeled through the corridor and I was led to room/bay number 3. This is the same bay that I was in last time! I changed into my gown and the anxiety began to rise as we waited for the team of doctors to round before I was put under anesthesia.

I’ve been put under anesthesia so many times that at this point, I typically know what to expect. However, this time was different. I was having the same procedure done that I’ve endured countless times- My feeding tube needed to be resized and replaced and I was having a new central line placed. Every time I am put under anesthesia, my condition becomes worse with each time I am exposed to the drug. I’ve always known that Propofol was complicated for me, but as I’ve matured, I am becoming better about understanding how my circumstances affect my loved ones.  I never remember the worst of my body’s response to anesthesia- I like it that way. For my Mom, the 48 hours following my exposure to Propofol is pure hell. I’ll have days of violent seizures and terrible Dystonia until the drug finally begins to get out of my system. My body will violently contort to the point that I look like I’m possessed and undergoing an exorcism. My family has to helplessly watch me convulse and scream out in pain for days. After a lot of convincing, my family and close friends helped me make the decision to brave the use of a different anesthesia. I couldn’t be selfish anymore. I used to go into the situation in relatively peaceful state of mind as I knew that I wouldn’t remember the worst of it. I couldn’t continue to put my family through hell by refusing to try other options simply because I was afraid of a different drug being worse. It was finally decided that it was time to try something different… Different scares me.

The anesthesia team came into the bay to discuss our options. I was growing more and more nervous by the minute and at this point, I was just ready for them to go ahead and knock me out. I was scared of the risks that come along with this disease and anesthesia. Anesthesia can be deadly to those with my condition and that recognition was scary… But then I noticed that I was going about this all wrong. ANYTHING can be deadly to those who live with Mast Cell Disease. Every time that I make the decision to put something in my mouth, I run the risk of having a serious allergic reaction. Every time I take in a breath, I could potentially inhale something that could send me into anaphylaxis- That doesn’t mean that it will happen, though. I was letting the idea of the reality that a different drug could be worse keep me from trying something that could be potentially better. I had to try something else, so that’s exactly what we did.

The nurse anesthetist cleaned my line (I have a mediport which was surgically placed under the skin on my chest) and began to push the Versed into my bloodstream to help me relax. I was relieved when she told me that she would be the person by my side throughout the entire feeding tube and line placement.Once I was given enough meds to take the edge off, my nurse headed back to the procedure room to get everything ready.  Mom climbed onto the stretcher and sat next to me while we waited. We watched some of my favorite clips from The Ellen Show to ease myself out of the stress mess that I had become so that the loopy meds could begin to take effect. I can always count on Ellen to make me laugh before going under anesthesia for surgeries and other procedures- It’s become routine for my Mom to pull up Ellen videos on her iPad when I’m in dire need of distraction. After watching several funny videos and taking all the pre-anesthesia game face selfies my phone could hold, the nurse peeked her head around the curtain and said that they were ready for me!

The next thing I knew, I was waking up. Unfortunately though, I wasn’t supposed to be waking up as I was still on the table. Thanks to my complicated body having such a high tolerance to medications, I woke up in the middle of the line placement. I remember being scared and crying- the drug cocktail that I’d been given messes with your mind and everything feels much scarier and more intense than it actually is. I remember telling them that I was scared and hearing several voices telling me that I was doing a great job breathing through the fear I was feeling. They promised me that everything was okay and that they were going to get me comfortable- and they did. I was probably only awake for two minutes (if that) before they were able to get me sedated again. The next time I regained consciousness, I was in recovery.

As usual, I was having so many seizures and Dystonic episodes that they had to sedate me again just to get ahold of the convulsing. Anesthesia always seems to do this to me. I’ll spend hours violently shaking and thrashing until they can gain control by sedating me again. The nurses who work in outpatient recovery are always kept busy when I’m in- They always have to call the anesthesia team back into the unit to help them knock me back out. I was sedated for a few more hours and when they began to wake me up, I was excited to see that one of my favorite nurses had come down to help me. It usually takes 3-4 nurses (in addition to my mother) to load me into the car once I’m stable enough to leave. I have a hard time maintaining consciousness so they’ll take me to the car on a stretcher and they all work together to get me safely transferred into our SUV. The nurses play a vital role in helping me after anesthesia- both physically and mentally. As soon as I was buckled into the car, we said our goodbyes to the amazing team of nurses and we were on our way! I was happy to pull into the driveway and be greeted by my two dogs and younger brother, who helped me out of the car and into the house. This was the best he’d ever seen me look after anesthesia, despite still not being in tip top shape. I’m glad that we seem to finally have a better anesthesia option, especially because I end up having to be put under every two or three months.

I had a fantastic team on my side and I can’t be any more thankful for the care that was given to me. My team was so reassuring and I felt safe being in their hands. Despite waking up in the middle of the line placement, I felt that overall everything went relatively well. The team of physicians makes all the difference- it’s easy to tell apart who does this job for the money versus the ones who genuinely want to be there. When you find your life in shambles and end up with a medical mess like myself, you encounter many types of individuals in the medical field. I’ve seen so many doctors and sometimes you begin to question if you’re seen as a person or a case number. My team of physicians went out of their way to make me feel like my thoughts and opinions were valid and made sure that I was heard. They were there to help us through the problem-solving regarding finding the safest options for me to try and they were there to reassure me when I was scared. It’s the teams like this one that make this nightmare a little less scary.

I’ve taken away a lot from this recent trip to the hospital and I only wish that I had tried something different sooner. I’ve always said that I thought it was absurd for someone to let the fear of something bad happening prevent them from doing anything at all, and here I was doing exactly that. I’m thankful for my amazing friends and family who helped me through the decision process and coaxed me into trying something that I’d never tried before. Yes, I woke up in the middle of the procedure… but now we just know what to look for and hopefully prevent in the future. Thanks to taking a risk, I had a better outcome. You’ll win some and lose some- this time I’m just happy to say that I’ve won.





The Day I’ll Never Forget

I remember sitting in my 2nd grade math class as we were discussing geometric shapes. We compared spheres with baseballs and cones to birthday hats (and ice cream cones, of course). I remember watching the ticking hands on the clock as I eagerly waited for the assembly that would be happening later that day. This wasn’t just any old school day- Our local meteorologist, John Cessarich, was coming to teach the elementary school students about tornado safety. I was SO excited- my friends and I were going to be in the presence of our “famous weatherman” whom I watched on the news every morning before school. My friends and I celebrated what we expected to be one of the best days of our 2nd grade lives. Boy, were we wrong.

My 2nd grade teacher was quizzing us on our geometric shapes when the intercom buzzed into our classroom for the first time that day. An office worker had summoned multiple students for early dismissal – none of whom were expecting to leave early. That was weird. I remember making jokes about eating ice cream cones in cone-shaped birthday hats when the office aid called into the classroom for the second or third time and notified our teacher that additional students were being dismissed early. At this point, I wasn’t really sure what was going on. Some students had begun whispering amongst ourselves and throwing out crazy theories as to why so many students were being taken out of school early. Jealousy began to overcome the remaining students as we all wouldn’t have minded getting out of math class early like our peers. I was surprised when the “office lady” buzzed in through the intercom and asked my teacher to send me to the office with my backpack and other belongings. I was being dismissed early! I was excited, at first. When I discovered that the hallways were buzzing with activity, I began to question what was going on. Why are all of us leaving school early? Should I be happy? Do I need to be scared? What on Earth is going on? There were more questions than answers. I was excited to learn that my Mom was waiting for me and a few of my neighborhood friends in the office. I wondered if it was some sort of surprise trip to McDonald’s for lunch. Why else would my Mom be picking up myself and friends from school? Our innocent little minds never would have guessed the news of the events that had unfolded that morning.

We pestered my Mom for details as we walked to the car. The atmosphere was heavy with emotions from everyone around us. Our energy of excitement was quickly diminished to a feeling that I still don’t know how to describe to this day. Our parents clearly weren’t picking us up from school early to take us to McDonald’s or to play hooky. I sulked as it became clear that I would not be attending the assembly at school. I found it SO unfair that I wouldn’t get to be in the same room as John Cessarich. I wouldn’t get to learn about tornados with all the other students.

As we piled into the car, my Mom was trying to figure out how to break the news of the terrorist attack to us four “big kids” before we headed to pick up a younger one from preschool. We were told that two planes had been purposefully flown into the Twin Towers in NYC. There was an attack at the Pentagon, too. Lots of people had died. There were children who would no longer have their parent(s)… Kids just like us. I immediately felt terrible about the complaints I had issued just moments before. This was the day I began to understand the true definition of tragedy. Why, Mom? Why would someone intentionally attack thousands of people? Why, Mom? WHY? This isn’t fair. Our little minds had a hard time grasping the reality of what had happened. When we got home, Mom immediately told us not to turn on the TV. We played outside for hours, with the events of that morning quickly slipping to the backs of our minds. I had not yet seen the haunting images of the planes flying into the towers. After the other kids we brought home with us were picked up by their parents, my mother allowed me to watch the news.

I’ll never forget seeing footage of the Twin Towers collapsing. I’ll never forget the sheer terror that overcame me as I thought about my Dad who was away on a business trip. I began to understand that it could have been me grieving the loss of a loved one. My father flies frequently for work- the company he worked for even had a facility in New York. My father was out of town when the attack on 9/11 transpired and we wanted nothing more than for him to be home with us. Mom explained the reason behind so many parents picking up their children from daycare and school- They wanted to be able to hold their loved ones close as they coped over the loss that thousands of others were grieving. Images of the terrorist attack were playing constantly in our minds, as well as continuous coverage on every news station. For days, my siblings and I were sheltered from the television sets (along with countless children throughout the country). As I reflect on the events of the attack that happened on September 11th, 2001, I find myself with the same thoughts I’d had at 7 years old. I don’t understand why thousands of lives were taken that day and I never will. My level of heartbreak increases with every anniversary of the attacks as I grasp more and more of the realization that it could have been me that lost loved ones in the violent attack. It’s unfortunate that it took something so drastic to bring the country together, but I admire everyone who came together to show me why I’m proud to be an American. Even though I didn’t get to see the weatherman that day, it was clear to me that a dark cloud would be settling over our nation.


Earthquakes & Aftershocks

Life is notorious for those harrowing moments that become the game changers… Moments that you won’t fully grasp how significant they are until the moment is over and you’re left with a memory. Within an instant, life as you knew is gone and you’re left with pieces that you’re expected to somehow fit back together.

I remember waking up and hearing the TV. My attention was immediately drawn to the news reporters’ wavering voices as they were broadcasting about a devastating earthquake in Italy. I thought of all the families whose lives had been affected and would never be the same as it once had been. I remember the moment that I looked at my life and thought, “Things are going to be different now”.

Like an earthquake, life has moments that shake you to the core… The ground crumbles underneath you and you’re left with deciding which piece of dry land looks the safest (when you can see that the ground is cracked and disturbed on both sides). Where do I go from here? My foundation collapsed. My most prized possessions are damaged and they’ll never be the same again. I had to choose between starting over in the same town while having constant reminders of catastrophe before my eyes or moving far away and starting over from scratch. I could build a new house somewhere else or attempt to gather remains from my childhood home and attempt to rebuild my life. If I choose to stay on the same land I’ve always known, I’ll have to become  acquainted with imperfections in the land I’d previously called home. I’ll have to accept the fact that my favorite oak tree isn’t here anymore, as it was destroyed when the earthquake hit. The little creek that used to be filled with peaceful chirps and buzzing is now vacant of life. It isn’t the same anymore and it will likely never return to its “pre-quake” state. The earthquake destroyed the foundation of my life as well as the lives closest to me. No matter how hard I try to shove the trauma and fear out of my mind, I’ll never be able to forget the sheer terror I felt as I watched everything around me crumble. I’ll try to forget, I will… But sometimes life has memories that you aren’t supposed to push out… Life events which teach you lessons (that you never wished to explore in the first place). As much as you hate the reality of the events, you know that it has somehow molded you into the person you’ll ultimately become. I just have to deal with the reality of this earthquake- MY “earthquake”- Just as some have to cope with losing their homes due to hurricane Katrina.

While some are facing circumstances of brutal natural disasters, I am here fighting a different disaster of my own- Mast Cell Disease. A piece of me crumbled when I saw my entire life fall to the ground while another part of me became stronger. I’m proud to be stronger. I’m okay with this version of myself. I just have to keep reminding myself that this wouldn’t have come to be had I not endured the earthquake that changed me to the core.

Just as you begin to re-discover your life under new circumstances… Just as you begin to recover from the trauma… You’re hit by the aftershocks. The aftershocks threaten to undo any and all progress you may have overcome since the initial event. Everyone knows that aftershocks come after an earthquake, but we never imagine being held hostage by its wrath. “What are the chances of this happening to us?”, we ask. No matter how prepared you think you are, there are complications that arise… The game-changers. What are you supposed to do when your place of refuge is disheveled? Where do you run to? When we’re in the middle of damage control, we fail to see how many people are there for us. We forget about the citizens who are donating their time and a fraction of their pay checks to help us recover. Never forget that there are always people who are looking out for you. Don’t forget that you are never alone, no matter how lonely and isolated life is capable of making you feel. Brighter days will lie ahead and there will always be someone to help you through the earthquake and its aftershocks.




I remember being a little girl and staring at the sun every 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. I fought to win every battle I encountered, whether it be as small as fighting to prove that I was correct (even if I knew 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.


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”.


Brynn seeing the CNN story for the first time




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.


Shopping cart can double as a wheelchair!



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


“I’m Okay.”

As I lay in my hospital room, I can’t help but to ask myself why bad things happen to good people. Have you ever thought about the ways our lives play out? Why do bad things happen to good people (and I am in no way referring to myself)? The most beautiful people that I’ve encountered in my life are the people who have endured the most heartbreak. The strongest people I know are the ones who go home at the end of the day feeling like they’re the weakest. Why is it that the most beautiful spirits are the ones that struggle so much? Is it because the rest of us are so oblivious to the world around us to realize how thankful we should be? I’ve learned that when I lose myself, I somehow manage to figure everything out when I am trapped between these hospital walls- the dreary, lonely, hospital walls. Maybe it’s the beeping and buzzing in the hallway that makes me realize I’m not alone. I know that the patient in the room next door is hearing the same beeping that I hear (if they’re conscious) and for some reason I am able to find peace in that- the realization that I am far from alone. Maybe it was my caring nurse who basically searched the hospital up and down to find the specific drink I requested because I’m allergic to just about everything else. Maybe I chalk it all up to my amazing mother who is attempting to sleep in an uncomfortable chair beside this hospital bed (for the 100th time). What if I’m only finding peace due to the realization that others around me are hurting more? Why is it that we as human beings allow ourselves to dismiss our own pain just because someone, somewhere, is hurting more? Why can’t we realize that it’s okay to accept the pain we’re enduring? Because a stranger on the other side of the Earth is worse off than me, I should just pretend that my pain is irrelevant? WHY must we all feel the need to explain ourselves for each and every thought that runs through our never-resting minds?

After a solid 48 hours of living hell, I am here to spread the message that I have relearned today: “It’s okay not to be okay.” Every time I land within these hospital walls, I turn to the only thing that I know will never leave me- music. As soon as I get the opportunity, I find my headphones and drown out the hospital buzz with the familiar lyrics that bring myself back to sanity with a message that puts everything back into perspective; It’s okay not to be okay.

Jessie J, thank you for using your voice to share the message that is responsible for guiding me through dark and difficult days. Without fail, your lyrics are the first ones that come to mind when I am trapped between these hospital walls. The funny thing is, your lyrics are so familiar to me that they still manage to come to me even when I’m completely out of my mind. Although I wasn’t aware of it at the time, I now know that it was your music that pulled me through the complications that arose from my previous surgeries. As I was waking up from anesthesia, my mother and nurse encouraged me to listen to music to distract me from the pain and discomfort I was feeling. Now that I have recovered from the trauma of that situation, it makes me smile to look back and see how much your lyrics helped me cope with the pain that I thought would never end. Most people embarrass themselves by talking nonsense as they come out of anesthesia- I sing. I typically cringe when a friend or family member tells me that they have a video of me that was taken while I was “loopy”, but when I heard myself sing the first line of lyrics, it was different. You see, normally I make a major effort to “be strong” for myself and those around me. I’m a “fake it ’til I make it” kind of girl. When I saw the video of myself groggily singing along to your lyrics, I was overcome by a feeling that I haven’t fully allowed myself to express up until now- vulnerability. Sometimes I believe that the only time I’m truly being myself is when I’m singing; I found this to be all too true when I saw videos of myself singing “Big White Room” and “Who You Are” as I was recovering from surgery. Thanks to the anesthesia, the true emotions that I’ve always tried to hide, came through. I remember being in an indescribable amount of pain and saying, “You have no idea how hard I’m fighting to keep it together. I don’t want to start crying.” The anesthesia must have been wearing off at this point, because I clearly remember my nurse immediately responding by telling me that I don’t have to be a hero all the time. Until that moment, I couldn’t believe how much time I’d spent trying to be something that I wasn’t- “Okay”. The truth is, by sharing this message along with the video, I feel more “real” than I have in a very long time. This is me, the real Brynn- I’m vulnerable. I’m scared that I’ll never accomplish everything that I’d dreamt of because of this cruel illness. I’m heartbroken for the opportunities that I’ve missed out on and experiences that I won’t get the chance to live out- But I am so much more than a sad story. I’m the success story. In spite of all the negatives I’ve faced and all the lows I’ve hit, I’m Okay.

If you ever need to have things put into perspective, all you have to do is spend a few moments within these hospital walls. You’ll realize that for every tear shed of sadness, there are even more cries of relief. For every life that is lost, another is saved. Hospitals are places of celebration- that’s something that you will never understand until you see it for yourself. These hospital walls contain more hope than despair.  This is the hospital that made me understand that not everyone gets second chances, but those who do are less likely to take them for granted.

To each person who lays an eye on my story, please believe me when I say that if you’re struggling, it’s okay to talk about it. If you aren’t okay in the moment, I can guarantee that you will be one step closer to “okay” by the time you acknowledge it.






“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!


“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

“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.