Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

Why It\’s More Than Dance

Written by Katie. Posted in Family, Goals, Memorable Experiences

Allie and I have danced together since the time she could walk.

We have continued to dance through gymnastics.  Through celebrations.  Weddings.  Funerals.  Sicknesses.  Concerts.  Recovery.

Each year growing up, my family would travel to Lake Leelanau for a week at the lake.  Dance was always a part of that week for us.  We would leave having choreographed at least two dances on the lawn that week.  Sometimes it was to “Baby Got Back.” Sometimes it was to Disney show tunes.  We didn’t care.  We just loved to move.

Growing up, we also spent hours and hours on end in my parent’s basement or backyard making up dances.  I remember one particular afternoon when we danced to Madonna’s Immaculate Collection in the sprinklers for hours…until we were wrinkly prunes.  That day still makes my heart smile.

As we grew up and advanced as gymnasts, dance evolved for us.  Allie choreographed many other gymnast’s floor routines including hers.  I choreographed my floor routine with the help of a fellow gymnast and dance major, and helped choreograph a few others.

Dance grew to be more than a hobby.  It became a passion.  A love for the both of us.

Since we have both recovered after being at our sickest, we have talked about choreographing a dance together.  It has been years.  We have looked for that perfect song. I have even put it on my annual 50 goals for the last two years.  However, with Allie being in Maryland and now Virginia, the time has just not been right.  On the occasions that she has been home, the visits have been packed full of family, holiday stuff, friends, events, and appointments, which has left very little time for dance.

So when Allie told me that she would be home all summer, one of my first responses was, “Yes!  This is the summer we can finally choreograph!”

Well, little did I know at that time, that it would become even more than that.

After talking back and forth with our former head coach about job options for the summer, Allie committed to two weeks of coaching the gym’s summer gymnastics camp.  One week, Allie will be an event coach, and one week she will be the lead dance coach.  The day she called me, I was beyond excited for her.  I started to rattle off songs that would be good…and this is when she asked if I would help her.  Forgetting I had POTS and EDS, and not thinking about how rigorous the week would be, I quickly jumped at the chance.  Allie ended up emailing John (our former coach) and he said he would love it.  He gave me two options: I could either come on as a paid dance coach or a volunteer dance coach for the week.  He explained that the responsibilities would be to choreograph three routines in advance: an easy, a medium, and a challenging routine, and then coaching the camp would consist of four consecutive days with five hours of dancing each day.

I knew right away what I had to do.  Yes, I am stable with POTS, but there was no way I could commit to the paid position.  I teach half-time for a reason, and teaching does not require me to be on my feet, moving for 5 hours straight.  Plus, let’s face it.  POTS can be so unpredictable.  Still so stoked for the opportunity, I decided to come on as a volunteer.  I figured that way if I need to sit, I can sit, and if I need a period of recovery time, I will still be able to take it.

But the point in all of this is I am still able to dance.

With my sister.

For a week.

Knowing I have two months to get ready, has really lit a fire under me.  Even though I am not required to dance for the 5 hours straight each day, I am going to get in the best shape I can prior to the camp to see if my body can get to a point where I can do the majority of the camp.  All of this has pushed me to set more goals.

Goals…What I have come to learn that dealing with EDS and POTS is all about.  Setting goals and working towards them.  I will be going to my physical therapist on Tuesday asking if we can map out a game plan to try to get me to a point where I can “hang” for four days in a row with the young, amazing gymnasts with endless amounts of energy who are a part of the camp.

So, I guess all of this brings me back to why those four days is about more than just dance.

When Allie was in her hospital bed, we never dreamt she would be the lead dance coach for one of the best gyms in the country.  We just wanted her to live.

When I sat in my wheelchair each day, I never dreamt that I would even be able to think about working as a dance coach for a week.  I just wanted to be able to walk again for more than a couple of minutes at a time.

It feels like Allie and I have come full circle.  We started in the gym in diapers.  We grew up, while life continued to take many twists and turns for the both of us.

But we danced through it all…through the triumphs, the struggles, the pain, the sicknesses, the recoveries.

This summer we will return to the gym, changed as women. Stronger, with a better understanding of who we are.

But we will also return as two women still in love with dance, and the feeling it gives us.

The feeling of being alive.

A feeling we have both come to appreciate so much.

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