When You’re Fifteen

For some being fifteen means worrying about what you’re going to wear to the school dance, wondering who is going to be your ride to soccer practice, or thinking about that math test you forgot to study for. For others, fifteen comes with having to face a diagnosis that confirms some of your worst fears.

At the age of fifteen I was diagnosed with fibromyalgia. The Mayo Clinic characterizes fibromyalgia as “…a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.” With one word I went from being a high functioning student and dancer to having to reevaluate my everyday life. A single word opened my eyes to the pain I had been trying to subdue for so long.

All of this being said, I do not have your typical fibromyalgia diagnosis story. For many a diagnosis comes after a traumatic event and for many others it comes after years of prolonged pain. I am an anomaly to what is becoming a standard, I was diagnosed within weeks of the start of my pain. No specific trauma or years of suffering, but a “simple” transfer to a rheumatologist with my symptoms is all it took.

As a dancer, I was accustomed to the usual wear and tear that my body underwent at least 5 days a week for hours on end. Bruises, muscle strains, and exhaustion were not out of the ordinary, in fact they were almost a comfort because it meant that I had given it my all during class. But the aches started to become deeper and more frequent, the exhaustion more grueling, and perhaps the biggest red flag of all was that my arms had become painful to the touch.

After hearing my symptoms, my doctor referred me to a rheumatologist who would then diagnose my condition. Even though I had to begin to change my daily habits and the way I lived my days, I continued to dance for months after my diagnosis. I may have been in pain, but it was never enough to stop me from doing what I loved. Through the spring I continued to do well in school and as a sophomore, college naturally became a topic of discussion. I changed studios in the hopes of furthering my dance training before auditioning for college programs, but not even a week into the fall season I had a day that would change my future forever.

I was in a ballet class, we had done barre work and moved on to the center portion of class. Maybe two combinations in I started to feel fatigued and the pain began to set in, it was like a weight was suddenly on my back and I was struggling through the choreography. When it became too much I sat down, becoming upset that my body was taking over without giving me a choice. I remained seated for the rest of class and upon my arrival home took up residency on the couch. What I did not know in that moment was that over the next week and a half I could not get off of the couch. My body had suddenly shut down. I slept for hours on hours, my entire body was in immense pain, and I walked like an accident victim.

You’re probably asking “What changed?” and I have been trying to answer that question for the last 4 years, but I have no answer. No doctor could figure out what changed, and after time I attempted to return to school. I would try to walk to class but it took me at least an extra five minutes to get anywhere. Eventually it started to gradually subside but for nearly two years I thought that I would never dance again. The pain and exhaustion never reached a point where it was mild enough to let me continue on towards the future I had dreamed of.

After a couple months I began to become fed up with my body and was willing to try anything that a doctor thought might help. I went to a chiropractor and within thirty seconds of her trying to align my neck I was sobbing and nearly screaming in pain. I went to a holistic healer who set me up with a large range of supplements and followed a new diet she prescribed for a week before I couldn’t take it anymore. (It was a sort of no grains, no sugars-even natural, type of diet. I could hardly eat anything.) I went gluten-free for three months. I tried multiple medications. I tried taking no medication. I went to occupational therapy. I went to physical therapy. I even did aquatic therapy. I researched doctors all over the country.

*If you are still reading, please leave me a comment.*

After some time, I found a pediatric rheumatologist who would eventually begin to put Humpty Dumpty back together. Over the course of those two years, I saw her every 3-6 months. I started doing musical theater again, something I was always passionate about but was more feasible for my body than the dance I longed for. You might say that I was trying to fill a large void, but still getting to perform in any capacity I could is probably ultimately what got me through those two years.

At some point it became apparent that my dreams of going to college for dance were no longer realistic and I had to suddenly reconfigure a future I had been planning for 15 years. To say that this was devastating would be an understatement, but I had no choice. I had taken numerous art classes in school and decided that I wanted to go to college for something related to graphic design.

Even my college visits were not average; I had to decide if I could handle the long walk to classes every day, or how many flights of stairs were in the dorms, things that would become problematic if I had a bad day. After a lot of consideration I finally made my decision: Rochester Institute of Technology. I found a roommate, chose my dorm, everything and then my roommate asked if I was planning on joining the dance company.

This was my chance. My one shot to see if my body would be able to dance again; to seriously dance again. But what was I supposed to do if I found out that I could never actually dance again? I would never be able to handle losing the thing i had devoted my life to for a second time. Upon my arrival at college I decided that I couldn’t let this fear hold me back from what might be true joy and happiness and I am happy to say that a year and a half later I am now the president of that dance company. Every week I get to do the thing that I thought I had lost forever.

I wish more than anything that I could go back and tell that fifteen year old that things may change, but there is a reason for everything. Things may not happen the way we plan for them to, but maybe this is where we were meant to be all along.

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More Than a Dance Company, a Family

On Sunday afternoons, the dancers of Rochester Institute of Technology’s Vis Viva Dance Company gather not only to rehearse but to strengthen friendships that have  blossomed into a family.12957702_10153907296631999_8330277612180402194_o

Consisting of nearly fifty members, the company brings together dancers of all majors, styles of dance, and years of experience. From computer engineers to art majors and everything in between, some members are learning to dance for the first time, and some are continuing with a passion they thought would end once they left high school.

The members of the company spend so many hours together that the lines between acquaintances and sisters start to blur. “I honestly think it is hard to choose between my love of dance and my love of my friends” says Alex Wright, Vis Viva Alum. On average, we spend four hours a week together in the studio and at least the same amount of time outside of the studio. “I think since we all share a love for dance, we can spend time with each other whether we are dancing or not, the hours spent dancing together have brought us together and allowed us to get to know each other very well; enough to then want to do things outside of dance together” said Carly Hewitt, member and former treasurer of Vis Viva.

Corn mazes, study dates, venting sessions, coffee runs, hockey games, and So You Think You Can Dance 10703713_10204269507450735_7409855589178864945_nmarathons don’t even begin to list the memories we’ve made together. Kristen Hennessey, one of the founders of Vis Viva Dance Company, notes that “We all have grown together as dancers and people and are there for each other through all of life’s events.” We try to support each other at any extra events we are a part of; if someone is choreographing a separate show, being featured in a collaboration of artists, or playing club hockey, you can bet we’ll be there in the audience.

Spending all of this time together and developing our relationships makes us even stronger in our performances. You can truly see the bond we share when we’re on stage because we trust each other and we know exactly how everyone is going to move before they do. We are a single unit onstage; we all get our moments to shine but we come together and dance as one entity moving together.

11256611_285617671562053_3323795899335072468_nWe are confidants, therapists, and cheerleaders for one another, celebrating the accomplishments and supporting each other through the disappointments life throws our way. “I could escape all the other responsibilities I had and act like we had no cares in the world when I was at dance practice. They loved me because I was me. That is a beautiful thing to have in a team” said Alex Wright.

At the end of a long week, seeing these girls makes the hard things not seem so monumental. Reflecting on her time in Vis Viva, Carly Hewitt says, “The laughs are endless, the dances have been many, and the memories and friends I’ve made will last a lifetime. I’m very thankful for Vis Viva”.

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Adventures and Firsts

As the new year is upon us, one can’t help but reflect on the past year staring back at them through a shining, glittering, mirror. It is a time of cliches and trite sayings as everyone scrambles to relive the era that is about to come to a close. IMG_1357But to each individual there is nothing trite about the things they say because they alone are the ones who lived in those wonderful moments and they are the ones who fought through the bad to get to where they are today.

For me, 2015 was certainly the year of adventures and the year of firsts. It was the year of party hats, face masks, photoshoots,and truly incredible friendships. It was the year I ran my first 5k, picked apples for the first time, donated 8 inches of my hair to Pantene Beautiful Lengths for the first time, we raised over $70,000 towards cancer research for the first time in the history of RIT’s Relay For Life, the first time I went to the Rochester Public Market, the first time I went to Musikfest in PA, and the first time I began to feel in control. It was the year of living with my best friends, of homecoming hockey games, of countless performances, of silly pictures, of beginning to live unapologetically. IMG_2040It will forever remain the year I changed my major and started down a path I’m truly passionate about and that I can see a future in. It was the year of hot chocolate, laughing until you cry, and the year of being in the moment.

One of the largest things about this year that I can only begin to reflect on is that it has been the beginning of stepping back and taking a look at life, to take moments for myself and taking the time I need. Learning to really live and not just do is a thing that everyone struggles with but if you can really harness truly living, then that is all you will ever need.

As I look forward into 2016 this is my one goal, live. Live in the moments and learn to embrace the small things we take for granted. Make memories and not just resume fillers. Read books. Soak up knowledge. Dance in the rain. But most of all, live life to the fullest.

How long is forever?

Some say that all time is relative, years can feel like a matter of days while days or even hours can feel like weeks have passed. When time is so uncertain how does one even attempt to prepare for the future?

I have begun to come to that point in my journey where I am maintaining a steadily positive routine and I am probably as close to “normal” as I may ever get and I am as high functioning as I may ever be. But what is normal? Most people agree that there is no normal, but to someone with fibromyalgia there is a level of normalcy that goes out the window.

The best way I can describe this “normal” is having days or even just one day where you wake up and all you have to think about is the things that are going to happen in your day, how you’re getting there, your responsibilities. Not having a day where the majority of your brain capacity is taken up by the nagging pains, planning for how much your body will be able to do in comparison to all of the things you need to do. I have to accept the reality that I may never have “normal” days again.

But how do you accept that at only 20 years old you may never have a normal day again in the rest of your life? Will I be taking these same prescriptions for the, god willing, next 60+ years of my life? There is no end to fibromyalgia, there is no cure and there is no terminal diagnosis. There are just never ending days of figuring out how to get yourself out of bed every morning.

Distractions can be great. Friends who rally around you and let you forget for a few hours, a meal of something you’ve been craving that provides some amount of comfort, or that rehearsal where you get to dance and you worry about the pain later. But then at some point you are again alone with the same thoughts you once had and your only choice is to try to reflect on the moments where you were distracted because those are the things that give you the motivation to go on.

“Some things don’t last forever, but some things do. Like a good song, or a good book, or a good memory you can take out and unfold in your darkest times, pressing down on the corners and peering in close, hoping you still recognize the person you see there.”

-Sarah Dessen

“You are in control.”

I haven’t gotten to post in quite some time, somehow college catches up with you and suddenly you barely have time to remember to eat. Coincidentally in the past few weeks I have gotten some time to really reflect and re-evaluate life.

Probably about a month and a half ago I was in my kickboxing class when our teacher said something that I never thought would remain in my head this long thereafter. We were in the middle of our routine and she just kept saying “You are in control.” “No one else can take  control of your body but you.” This principle rang clear and true to me because the last thing I ever feel is in control of my own body. I usually feel like control over my pain, my exhaustion, and my constant brain fog is the last thing that I have.

But then a few weeks later I would go on to do something I never thought I would be able to do. I ran my first 5k road race. RAN. Yes, not walking…running. Three years ago I could barely get off the couch or walk and now I was choosing to run. For years I thought I would never dance again, but then I did. I never thought  my legs would be able to carry me through 3.1 miles of running but somehow at 7:15am on Saturday, April 4th, they did. Crossing the finish line I actually started crying because I never thought that this was something that I would accomplish. I could still cry just thinking about it. I regained control. I am in control. Yes, I have my bad days and the days where I am run down and have to take a step back from my life, but those are just single days. I am in control of this body and I can chose to do with it the things that I want. I can control running 2 miles a day or I can control taking a week to relax because I can listen to what my body needs.

Life is about more than the single bad days. It is about the laughs you have in your kitchen with your best friends when you stay up too late, or doing face masks with your roommate’s boyfriend, or taking a walk outside just to take in the smell after the rain. The little things are the things that make those bad days seem less bad and maybe, just maybe, if we can hold onto those moments, they will make the bad days start to fade away.
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The Spoon Theory

Imagine you’ve been given a limited handful of spoons, these spoons represent your energy. For every task you accomplish daily, you must give up one spoon. How long does it take before you are completely out of spoons? One hour? Three?

Does this sound crazy?

Maybe to the average, high-functioning, unlimited energy person, but to those with chronic pain (or any other illness) this is normal. There has been some criticism over “The Spoon Theory”, but I really think that it is an effective way to teach those in our lives about the pain and difficulty that we deal with everyday. If you think that chronic pain syndromes don’t exist, think again. Just because someone has the time, doesn’t mean that they automatically have the energy.

Please visit this link to read “The Spoon Theory”. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

200 Miles in My Shoes

Or 151 miles to be exact. That is how far I have to travel between my hometown and college. For some this means packing a couple bags and they’re out the door, but for me it means a car full.

As I packed for a winter break of 6 weeks, I began to realize just how much I would need to bring home. Some would call it excessive, but for a person with fibromyalgia it just makes sense. You want to make sure that you have that favorite blanket, the only pillow you can fall asleep on, and anything else that might make the uncomfortable and out of body days that much more bearable. What most people do not know or realize is that for someone with fibro, the comfort items go far beyond your favorite blanket or teddy bear.

Clothes make all the difference. Some days your arms can hurt so bad or be so uncomfortable that wearing anything with long sleeves, tight or otherwise, is simply out of the question. You might be able to get away with the giant sweatshirt you wear every night but if not, you go back to your blanket or layers of blankets. Some days leggings are great because they aren’t as warm as sweatpants so you don’t overheat as quickly but the same issues you face with your arms can quickly manifest itself in your legs even if just by a fabric that doesn’t feel right. Some days you won’t be able to stand having the collar of a hooded sweatshirt around your neck, so maybe those days you have to have a crew neck instead. It may not be summer but you might as well pack in case the weather suddenly decides to throw a heat wave at you or if there is even the slightest chance that you might be having a super warm day and your sweaters and jeans just make your skin crawl.

And if you’ve been battling any sort of sickness, be it a cold or a migraine or something worse, these discomforts get amplified to the tenth degree. The next thing you know, you are bringing home a humidifier, distilled water, another blanket, and a bag full of medications.

Then you want a hot drink to help you relax or to soothe you’re throat. It’s amazing but something as simple as having that drink in your favorite mug can bring so much comfort that it is honestly astonishing to me. I often say that it’s the little things in life that mean the most and that can impact someone on the deepest level, but I have never believed this to be more true than now.

So yes, I pack a pretty full car when I go home for breaks, especially a six-week winter break, but I have a reason for everything that I bring with me whether others can understand it or not. As with any illness, life suddenly gets complicated and overwhelming but finding ways to cope will be your light at the end of some long days.

Somehow this has started to sound like another installment in the “If You Give a Mouse a Cookie” series of children’s books.  They were some of my favorite books as a child and now I am beginning to realize that maybe they were meant to prepare me for life. Maybe they were supposed to show me that anything can happen and you always have to be prepared. Or maybe I just got way too deep and philosophical over a children’s book, who knows. What I do know is that I am starting to learn how to prepare for those 200 miles.