“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

 

 

 

Opportunities

“I don’t believe that old cliché that good things come to those who wait. I think good things come to people who want something so bad they can’t sit still.” -Ashton Kutcher

I hate it when people say that they “never get good opportunities” or “oh, if only I had been given the opportunity to”… For the most part, good opportunities don’t just fall into your lap. You have to get up and hunt them down yourselves. Opportunities are always out there waiting — some of us just have to search a little harder than others. On August 11th of 2013, I was one of the millions of kids sitting in front of the television set as Ashton Kutcher gave his monumental acceptance speech at the Teen Choice Awards. If I’m being honest, I never really paid much attention to acceptance speeches at award shows — I was just tuning in to see the musical performances. I often made it a priority to be sure not to miss major televised events because I didn’t want to be that girl to walk into a conversation and pretend I knew every detail about a subject when in reality, I had no idea what was being discussed. The thought of being unable to contribute to a conversation made me uncomfortable. While I am relieved to be able to say that I’ve outgrown the petty fears that once plagued my mind, I am thankful that they led me to hearing Ashton’s speech that night. If it had not been so important to me to be able to discuss the latest happenings on Twitter, I would have missed it.

Let’s be real — society doesn’t seem to expect much when it comes to acceptance speeches these days. I guess that’s why it’s considered a “big deal” when someone says something that is not only worth hearing, but worth sharing with all your friends on social media, too. Usually acceptance speeches consist of a bunch of “thank you”s and rambling off a long list of names before being cut-off by music as a cue to exit the stage. When Ashton (or as we’ve learned, Chris) took the podium and began to talk about opportunities and “being sexy”, he pulled my attention away from my phone and shifted my focus to the message that he gave us that night. For as long as I can remember, I can recall hearing celebrities and other public figures stress to their audiences that it is possible to turn your dreams into realities if you’re willing to fight for them. While there will always be people out there who are quick to shoot down the idea that “anything is possible”, there are even more people who are fighting to turn their desires into realities. I happen to fall into the category of people who are crazy enough to believe that we all hold the power to accomplish anything. Well, almost anything.

It’s obvious that there will always be circumstances that we have don’t have much control over, except for how we respond to those unforeseeable circumstances. I’d love it if I could cure illness by the snap of my fingers, but I haven’t acquired that skill yet. I can, however, spread the word about invisible illnesses. As my story makes its way around the internet, I am finally realizing that the hopes and dreams that I’ve had for as long as I can remember, are in the process of coming true. Here’s the catch- I never wanted it to happen this way.

As a little girl, when asked what I wanted to be when I grew up, I’d simply laugh and respond with “Famous”! I still have flashbacks to singing and dancing around the living room when I was five. I can remember my mom asking me to entertain my baby brother while she finished cooking dinner — she would put him in his high-chair and I would skip around the table singing whatever song we learned in kindergarten that day. I often talked about how I wanted to be on TV. I wanted to tell stories. As soon as I learned how to read and write, I wrote plays & skits. I always made sure to give myself the lead role, and then I would “direct” my siblings and friends to “Do what I say!!” I’d plan out every detail of my scenes — right down to the creepy music that foreshadowed Little Red Riding Hood was in danger. I had my future planned out beautifully; I could write stories with the intent to have them later turned into movies. I’d be the director as well as one of the leading actors. The funny thing is, I never once questioned my plans for the future. I had no idea that the story that was going to put my name on the radar would be my own: My battle against chronic illness.

For a while, I was bitter over the idea that my future had been ruined because of my multiple illnesses. I thought that surely, any opportunities out there would be taken from me because I was sick. It was around this time that I thought back to Ashton Kutcher’s speech about opportunities looking like hard work. Why should one factor of my life control every part of my future? Being sick makes it much more difficult to get anything accomplished, but that doesn’t mean that it isn’t doable. Illness has taken a lot away from me, but I do have one quality that has only grown stronger- my voice. I am finally being heard. As my health continued to decline, I became passionate about raising awareness for myself and others who are living with invisible illnesses. What was originally one story interview to raise awareness became the stepping stone that opened up my eyes to even more opportunities. On May 1st, 2015, my life changed when I woke up to discover that my story had made headlines around the world thanks to CNN’s feature about me; Brynn Duncan, the girl allergic to life, Bubble Girl.

If there is one lesson that I’ve learned in the amount of time that has gone by since sharing my story, it’s this — We have to stop waiting for tomorrow. For months, I’ve been so focused on what message I wanted to share with everyone that I failed to realize that the clock is ticking. I’ve had so many opportunities thrown my way since sharing my story. I became so overwhelmed and caught up over which path to take that I ended up passing them by because I was waiting for “tomorrow” (to feel better). I’ve finally realized that just as a tomorrow isn’t promised, I can’t keep putting the brakes on opportunities when I’m struggling with my health. We have to stop wishing for better tomorrows. We have to get up and fight for them.

Opening up about my health struggle to such a large audience has been one of the most difficult things I have ever done in my life, yet the most rewarding experience at the same time. I knew that sharing my story would be difficult, but I had no idea that it would end up being one of the best decisions that I’d ever make. One opportunity at a time, I am using my voice to help anyone who has ever struggled know that they’re not alone. It hasn’t been an easy road. This illness has knocked me down far more times than I’ll ever be able to count, but I know that I will always have people around to pick me up when I’m down. Do you want to know the best part of the story? I’m just getting started.

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!

Circumstances

“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.

Thankful Thursday- Happy Thanksgiving!

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

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

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

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Fight or Flight?

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I always try my best to describe my life in a way that can be understood by others without sounding so depressing, but the events that have taken place over the past month cannot be sugarcoated. My battle against mast cell disease has been terrifying.

I am currently on week three of this hospital admission- with the majority of this time being spent in the ICU. At this point, all the days start to run together.

I’ve been waiting about posting an update until I had something good to say, but the truth is that this disease is completely kicking my butt right now. While I have had improvements in some areas, I am still having seizures and we cannot seem to get my anaphylaxis and other episodes under control. As of today, I have officially been on chemo for one week. 2014 has proven to be a terrifying year for my family. There is a war going on inside my body and that will never stop being scary, but I can promise you that I’m not going down without a fight. I also wanted to take this opportunity to thank all of you for the endless amount of support that you have given me throughout this battle. It makes me so happy to know that the day I kick Mast Cell Disease in the @$$, I will have all of you cheering me on just as you have from the beginning. I couldn’t fight this battle without you and I love you all more than words can say.