“You have got to put fear in the passenger seat, boo.”

This is a phrase I heard time after time in my freshmen year ballet class at Connecticut College. What this meant to me then, however, is far from what it means to me now.  Then, not letting fear drive my life meant living away from home, branching out to go to that upper classman party, or volunteering to do a dance combination across the floor first.  All I can say is, I wish those were the things that I was still afraid of today… 

I’m sure my freshmen year ballet professor probably thought we were letting his advise go in one ear and out the other, but this phrase has stuck with me through my hardest times. Today, I face much more real, bigger, “scarier” problems. Today’s problems are the ones that truly force me to choose between letting fear drive my life, and remaining in complete control (or should I say at least letting myself feel like I am in control). The big problem I am facing now in life is that a week from Wednesday, I will be having surgery that will give me a permanent ileostomy.  For those of you who may not know what that is, the easiest way I can describe it to you in laymen’s terms would be to say “my insides will stick out of my belly and my stool will be emptied into a bag that surrounds that hole.” To say I’m petrified would be an understatement. Choosing this path was not easy.  Choosing this path is the epitome of what it means to put fear in the passenger seat.

Three years ago, I had a temporary ileostomy.  That was a piece of cake for me.  Got my colon removed, had a pouch for five months and I was feeling like a million bucks. When I got reconnected (small intestine to rectum), my body never got acquainted to having a shorter digestive track. The question then became more of a “so now what?” situation as I was fairly quickly exacerbating all my options. I went as far as Cleveland, Ohio to get treatment.  My body continued to fail me, and no one could figure out why.  This has gone on for 3 years.  Enough is enough.  It was now my turn to make the decision: get the permanent ileostomy, or suffer like I am currently; trying to go back on medications that made me look like an orange attached to a popsicle stick.  Most of you are probably thinking to yourselves right now, “she said it right up there.  She said she felt like a million bucks. It must be a no brainer to get the ileostomy.” WRONG.  Even though I felt great when I first had the ileostomy, something is very different this time.  This time it isn’t temporary.  This time it’s permanent. 

Making this decision was not easy for me.  I didn’t want to believe that this is what it had come to.  I knew that my options were running slim. I made the decision to have the surgery, and I am scared $h!+le$$ (literally and figuratively).  To be honest, for the past three years I had almost forgot about my time at Connecticut College.  It was filled with a lot of traumatic memories surrounding my illness. One example of this was when my roommate, on the first day of class, had to bring me a change of clothes to the bathroom because I had an accident due to my rectum being highly inflamed…It’s a good thing my roommate was quite possibly the nicest human to ever grace this Earth, but nonetheless, at this point in my life she was still a stranger.  If that doesn’t scream “shitty situation” I don’t know what will. 

Anyways, not soon after making the decision to get the permanent ileostomy, I was driving by myself, and I as I turned onto my road a thought popped into my head.  I heard the voice inside my mind say, “You have got to put fear in the passenger seat, boo.” At this moment I thought to myself, “what the heck?!?!?!?” I haven’t heard that phrase in years.  When I first heard the phase it didn’t hold much meaning to me. I loved my professor, and took every thing he said to heart, but at 18 I couldn’t put a handle on the phrase.  Now at 23 this has come to be my new mantra. The reality of my current satiation is: I know I need this surgery to feel like a million bucks again, but that doesn’t mean it doesn’t suck.  I am afraid of so many things surrounding this decision.  I am afraid people will think its gross.  I am afraid I wont be able to follow some of my dreams, such as be a state titleholder in a pageant, or dance for my college team.  I am afraid I wont love my body, and I am afraid of the unknown complications that come with getting this procedure done so young.

Even with all these fears, I still know I am making the right decision.  When I heard this phrase in my head, I knew it popped into my mind for a specific reason.  Not only was it a sign that my time at Connecticut College had a larger influence on my life than I had thought it did, but also, it showed me I can choose just how afraid of this I want to be. After making this decision, and hearing this thought in my head, I started to do things I NEVER thought I would do. I took a plane, by myself, to see my boyfriend in Colorado.  I HATE planes.  HATE them. Something just came over me and I started to realize life is to short to act out of fear.  I had a wonderful trip to Colorado and got to enjoy the state and all its beauty.  I stopped living life in fear because I now believed I didn’t have to.  I allow myself to be scared, but I know that fear is NOT driving my decisions anymore. Before making the decision, and remembering this phrase, the Colorado trip would never have happened. I will never know why I remembered that phrase when I did, but I’m going to take it as a sign that the universe has my back during this hard time in my life.

I am so nervous for this procedure, but find peace in the words of my freshmen year ballet professor. I will NEVER be able to thank him enough for getting me through the hardest part of my life to date.  Without him, fear would still be my main girl, and not my side chick.    

"With a little sass, and a lot of determination, anything is possible”

With the Miss New Hampshire pageant being over, I would like to share with you all the experience through the eyes of someone suffering from chronic illness. 

For this week my goals were very different than those of the 27 other girls I shared the stage with. Many girls had the goal of leaving there as the next Miss NH.  While that is on my bucket list for someday, with the way my health has been going, I had a gut feeling that it just was not in my cards right now. With that said, my goal was to finish my talent. To literally finish it without passing out. To be quite frank with you all, doing my talent scared me to my core. Every time I practiced, I would get to the end section and would start to see black spots. That scared me. I have an irrational fear of fainting and I would do anything to avoid that feeling. I thought to myself "Carson, you have to get through this somehow," but that was just it..HOW??

The Friday before miss New Hampshire week was the last day I practiced my talent, and on that day I couldn’t finish it. As I reached the end, my face would turn purple and I would be more dizzy than I ever had been before.  This made me worry about the week to come. This made me not want to go to Miss New Hampshire. This made me have to do some soul searching, and really find out what I wanted my goals for the upcoming week to be. This frustrated me. Actually, it did not just frustrate me.  It pissed me off.  I used to dance NINE dances in a dance recital all of which were over 3 minuets long, and now, I couldn’t even finish my talent that was 1 minuets and 30 seconds long?!?! As I sat in my bed at night, at 23 years old, I started to think of what this meant for me in life; "big picture" wise. I started to wonder: would I ever be able to dance like I used to? should I throw away my dreams of being a professional dancer, or dancing for my college team? does me not getting thorough this short dance parallel my life in the future and how things would now just be hard for me since getting my colon removed?  I just do not think anyone will truly ever understand what it is like to go out on a stage knowing you cannot give your best unless you have been in these shoes too.  It almost embarrassed me (being the very competitive person I am) to know before I even arrived to the competition site that I would not be able to perform at my best potential. I knew, however, I needed to put this all aside in order to get trough the week.

I had a multitude of things (scary things) floating in and out of my mind, BUT I had no time for frustration. I had never been a quitter. I started to say to myself “what do I do now?”  The answer was simple. I had to take a step back, refocus my goals, and put my mind in a different place to do all I could do with the cards I was currently being dealt. As stated previously, I decided to change my goals from winning to finishing my talent, and having a faint free week. GUESS WHAT FOLKS!? I reached both my goals. Thursday, the first night of prelims was my talent, and I finished it. Toward the end I started to see spots, but I told myself NOPE and managed to get through to the end. I knew it was going to be hard, but I also knew how mad I would be if I had to walk off the stage with my dance uncompleted. The best part of this was though, the 5, or so, girls that dedicated their night to helping me post talent. Some of them I was close to previously, and some of them were just pure Carson supporters. To say this melted my heart is an understatement. I felt alone in this struggle because it seems common sense that no one would put a talent on a stage they knew they could not do right? WRONG. I put this talent on the stage knowing I could do it at someone point in my previous years, and was hoping that the big man upstairs accounted for the rest of the gusto I needed. Those girls made me feel less alone, and I cannot even put that gratitude into words.

I wanted to share with you these difficulties I went through this week not to make you feel bad for my struggles, but to make you think about how you, yourself, would feel going into something where you knew you couldn't give your max potential. Maybe someday my illness won’t stop me from reaching my higher goals, but this week it did. It also taught me so many things about myself. I went from laying on the coach daily for at least three hours to getting through the hardest week of my life to date. Also, I learned that it is OK to do things simply for the experience of it, and to accept where you are at in life.  I do have to admit through, that even though I conquered the new goals I had set for the week, I still feel like I came up a little short.  While these new goals were real goals they were not THE real goals (if you pick up what I'm putting down).  I keep telling myself to accept that feeling and realize that I did conquer some "real" goals.  To also tell myself that my body adapted the best way it could have during the week.  Let me just say this: It’s crazy what your body can do when you have no choice.  

To anyone else that knows what it feels like to have your dreams on hold due to your chronic illness I am here for you. It is not easy to talk about, or admit, that you know you aren’t where you used to be in life. All in all though, my week could not have been better. I will forever be frustrated knowing my potential has been lessened because of permanent health complications, but I know I was given this battle for a reason. I am very lucky, and happy, to still be alive post colon removal.  I am still learning, however, how to operate my “new” body. 

Goals are SO relative to what is happening in life at that very moment. If I ever do this again I only hope, and pray, that I can bring that Carson that was once whole back to the stage. I am here to share with all of you that “with a little sass and a lot of determination anything is possible," and that is exactly how I would sum up my Miss New Hampshire experience.

"You look like an orange attached to a popsicle stick"

and he wasn't lying! This is what my dad said to me when he saw me in the hospital.  I was weighing the least I had weighed since fifth grade, but had the biggest head on the block (and no, not the confidence kind of big head).  This large head can also be known as "moon face" and happens when one is placed on a very high dose of a nice little nasty drug: prednisone.  By the point this picture was taken in June 2016, I had been on 60mg of prednisone since January, 14 days of liquid food, and had my colon removed.  If that won't alter how your body looks I don't know what will!

This blog post is to show you when life gives you lemons (oranges in this case) you have to make lemonade/ limoncello; whichever you prefer!  I won't lie at the time I really had no idea how large my head actually looked on my little body.  If I did, I may not have been as strong as I was at that time.  It's hard enough being a 20 year old girl.  Every girl struggles from body image issues even if they like to say they don't! AND did  I forget to mention IT WAS PEAK BATHING SUIT SEASON? Yup, I forgot to mention it but I am telling you now because just when you thought it couldn't have gotten any worse for this girl with no colon IT DID.

However, I didn't let it stop me. As you can see, I still went out there and strutted my little heart out in this new chubbies bathing suit my mom had got for me for when I got out of the hospital. For those of you who knew me at this time, you can also see my blue hair I also decided I needed to be the next Kylie Jenner..

All jokes aside, while I was still my sassy self on the outside, on the inside I remember feeling very unfamiliar with my own body.  I did not by any means hate it as I knew it was a product of all I had just went through, but I sure as hell did not love it.  I was used to being an all season athlete, cheering and dancing every day of my life, but this summer would be different.  This summer of 2016 I did not have my usual strong athletic "beach body," but I had A body. Three weeks earlier I was in the hospital fighting for my life, so being alive  in whatever shape or form my body decided was all my family and I were happy about at the time.

I tell you this story to make you think (and hopefully chuckle).  Everyone goes though some form of body consciousness, but next time you are so hard on yourself think of this girl.  This 20 year old girl who went out in her bathing suit, with her blue hair, and with her orange sized head not being able to do anything about it. This body was the product of a very hard and long journey.  It wasn't perfect, but it was mine.  As much as I did not love it, I was proud of it, and most importantly just happy to be alive.

I couldn't have gotten though the summer of 2016, however, without the love and support of my friends.  I would like to give a shout out to my very special friend Kara who spent 2 hours of her life that day blowing me up this float just so I could put my little popsicle stick body inside of it for all of five minuets before I got tired.  She did it with a smile.  With that said, I would just like to mention no matter what the situation, life is easier with the ones who love you by your side.

Peace out summer "beach body" of 2016.  I didn't hate you, but I'm VERY happy to never have to see you again!

Invisible Illness - what you don't hear

Seven years ago I was diagnosed with an autoimmune illness called Ulcerative Colitis.  While I was relieved that the doctors were able to give a name to what was going on with my body, no doctor prepared me for what I would endure from the age 16.  No doctor told me what it would be like, mentally, physically, or emotionally to have to live with a physical illness for the rest of my life.  No doctor told me that I would have to learn on my own how to advocate to the world.  That it would be my responsibility to convince everybody I came in contact with that even though I did not look sick on the outside, I was very sick on the inside.  No doctor prepared me for the many walks of shame; the time I was walking alone on my college campus and passed out with no one I knew around me.  No doctor prepared me for all the things you “don’t hear about” after hearing the diagnosis.

Since being diagnosed I became an expert on all things chronic illness.  I want to make it my responsibility to make it easier for anybody I can. The purpose of this blog will be to provide all of those struggling with a chronic illness a way to hear (read) about what no doctor can prepare you for when you get the "official" diagnosis.   What does it really mean to live with the illness and the diagnosis?  This blog will not only be about sharing my story, but also, the story of others who too live with chronic illness.  By including stories from other chronic illness worries, my goal is to make sure no one feels alone in what they will endure from the time of their diagnosis, to the day that they leave this earth.   

I want to make it known that for those suffering from chronic illness(es) the many horrific disease treatments, with horrible side effects, NEVER end.  Treatment and its side effects go on, forever, with no promise of ever becoming “better.”  It’s a progressive state of worse.  Nearly 117 million Americans suffer from at least one form of a chronic illness, and the illness ulcerative colitis makes up about 900,000 of those people.  To me, that is not only 900,000 people I could directly help, but also, nearly117 million people I can relate too in one form or another.

My disease eventually became so severe that I had to have my entire colon removed at 20 years old, and live with an external ileostomy.  This is rare, and only happens to about 2% of those living with Ulcerative Colitis in the United States.  I will not stop advocating for those with chronic illness until this specific 2% on people feel informed, comfortable and confident in what is going on with their body.  Knowledge is power. I want to show those who find themselves in similar situations that there is hope.  There is a way to turn this huge negative aspect of their life into a GIANT positive.  

I will make it my life responsibility to not only keep this blog going, but to also speak out physically in person.  I want to do this at various schools, to their chronic illness clubs, and share with them my story so they can see how I have overcome the horror of this illness(es).  I will continue to try to jump-start a chronic illness mentoring system at Boston College as I return there (hopefully) in the fall.  On the most basic level, I will raise money for finding a cure, by getting involved in my community and participate in walks relating to various forms of chronic illness; and especially walks that pertain directly to Ulcerative Colitis.  

I want to inspire others.  I want them to know that they are not alone. I want to give them strength in their fight.  Writing this blog will allow me to show everyone struggling with a chronic illness that it does not define them.  What does define them, however, is the attitude they have, and how they use their chronic illness as a strength in their life versus a weakness.  If I can just reach at least one person through this blog, then I know I am answering my call; allowing people to live the happiest, and best life, they can while struggling with a chronic, lifetime, illness.