Tag Archives: Brynn

“I’m Okay.”

Posted on by Standard 3

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

Posted on by Standard 17

“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!

Thankful Thursday- Happy Thanksgiving!

Posted on by Standard Reply

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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I AM NOT INVISIBLE

Posted on by Standard 3

I can easily say that last night was the most fun that I have had in years. I owe it all to the amazing Hunter Hayes. Last night, my friend Michaela and I attended a show from Hunter’s “We’re Not Invisible Tour”.  I have always had a lot of respect for Hunter as an artist, but after last night, words can’t even begin to express how much I admire him. With Michaela by my side, the night was perfect.

When I first heard his song, “Invisible”, I loved it.  I related to it so much, that I felt like it could have been written specifically for me. I’ve always been different. It was extremely difficult for me to relate to most people at school. I was very sick for all of my teenage years, and it forced me to grow up faster than everyone else. For the first five or six years, I was able to somewhat cover up my illness. Everything changed in 2012. After seven or eight years of searching for answers, I was diagnosed with a form of mast cell disease called “Mast Cell Activation Syndrome” as well as a form of autonomic dysfunction known as “POTS”. I had 30 hospital admissions that year. I never imagined that I would have to fight so hard for my life.

Earlier this year, I was laying in the ICU listening to “Invisible” on repeat. I remember looking at myself in the mirror and shaking my head as I realized that tubes and machines were keeping me alive. For months, I would just stare at my legs and plead for them to let me walk again. All I wanted was to be normal. I was tired of everyone staring at me. People were so busy staring at feeding tubes on my face, lines, and my “Bionic Legs” (leg braces) that I felt like they couldn’t see me. Hunter’s song helped me through all of those difficult times.

Michaela and I were able to meet Hunter before his show last night, and I have to say that he is one of the most genuine people that I have ever had the privilege of meeting. We got to tell him how much we loved his music and were able to tell him our story. We told him about the “Teens with Feeding Tubes 2014” video that Michaela made- Together we decided that “Invisible” would be the perfect music for the video. He loved it when we told him that the video was put to his song and we could tell that it truly meant a lot to him. He’s such a nice fella!

Being the advocates that we are, we were THRILLED to be filmed before the show. We were asked, “What does ‘Invisible’ mean to you?” After expressing our love for the song, we of course took the opportunity to raise awareness for ourselves. Michaela told them about our “invisible illnesses” and we followed that with showing them all of the pumps and lines we’re attached to that keep us alive. We love to spread awareness every chance we get!

I will never forget the feeling that overcame me when Hunter performed “Invisible” last night. Michaela looked over to me as we were belting out the lyrics and I became overwhelmed with happiness. I looked down and realized that I was standing without help and at the same time, I was wearing my 30lbs backpack that contained the three different pumps that have slowly given me my freedom back. The best feeling though, was looking to my side and seeing Michaela. We’ve been through so much in the short years that we have known each other. I have no idea where I would be without her. (I would not have lasted 24 hours with my first feeding tube if she had not been there telling me that it would get better. I almost pulled the NG tube out of my nose two hours after it was placed, but Michaela and my other “tubie” friends were there to talk me through the difficult days.) At the concert last night, we weren’t “the sick girls”- We were just Brynn and Michaela.  We are not invisible.

Thank you again to Hunter Hayes for giving us such an amazing night. I hope that I get to come to another show soon, and that one day Hunter will see this and know how much fun we had at the concert! To any of you who are going through difficult times:

“Hear me out, there’s so much more to life than what you’re feeling now. Someday you’ll look back on all these days and all this pain is gonna be invisible.”

-Brynn

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