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.

 

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

“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.

-Brynn

 

 

 

Rare

“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!