Thursday, August 17, 2017

En Pointe!

After DBS surgery and a whole lot of med management, I was told that the most important thing that I could possibly do is exercise intensely. It is the only thing that is going to keep me mobile at this point. I signed up for Rock Steady Boxing, a Parkinson's exercise class, and ballet. 

Me at RSB with the lovely Iris, the youngest boxer and the oldest boxer in the class. Our age range goes from 22-90! How amazing is she?! 

The PT told me to try something I had done when I was young because of muscle memory, so I decided I wanted to go back to Ballet. For over a year now, I have been training multiple times a week. I have gotten pretty good at it too! Good enough and strong enough to where I am going to begin to learn pointe. 

Why is this such an incredible mind blowing accomplishment for me? My ankles. 
Back before DBS, one of my biggest problems was that my left ankle was severely pronated inwards. I could not hold it straight and at times it would twist inwards at 80 degrees. You really cant walk on the side of your foot comfortably or safely. I was casted for a custom ankle foot orthosis (AFO) and wore that for two years until I had DBS.

My ankle in 2012, a few weeks into my sinemet trial. Can you believe this was actually an improvement on what it was previously?

My AFO was one of the first things that made my disability visable. I was a little upset that I needed it at first but I grew to love it. 
Loving a medical device that makes you stick out as the sick girl? Well here's the thing. It hurt like hell not to have it on. I was so miserable and limited and had to be so careful not to trip over my own foot. Then I got the brace and I could walk and go wherever I wanted with a lot more comfort. Were there times I was self conscious of it? Of course I was. I love skirts and shoes. It was hard to find cute shoes to fit into it, but I got really creative and found some amazing and cute shoes that my brace could fit in.

People would always say stupid things like I am so sorry you have to wear that thing! 

I am not sorry I had to wear my AFO. It gave me mobility and freedom. When are we going to stop looking at assistive devices and think they are bad things? They grant people with disabilities freedom and independence. They are not something to look down on, they are really freaking awesome and should be celebrated.

Celebrating my AFO. This is my sorority big sister Courtney and I, in 2013 when I joined Alpha Sigma Pi at UofR. Courtney tore her achilles during my process. We titled this picture 'sisters help hold each other up'

During the DBS surgery, they have you awake. They turn it on to test during the procedure to see if they are in the right spot. I remember the moment where I felt my body start to work again. I remember my super rigid shoulder relaxing and I remember my ankle being able to straighten and I could tap my foot with a smooth, controlled motion, which was hands down the most incredible feeling in the world, to feel your body that had been so immobile for years begin to all work together again for the first time in forever. 

Before DBS, if I tried to even point my foot I would have massive muscle cramps all up my leg. Dystonia would set in and it would hurt so bad. After the surgery that all changed. I could walk without the AFO and rebuild all of the strength I had lost after six years of PD. And here I am, two years post DBS and lots of hours of practice, and my ankles are strong enough to go en pointe. 
Actually, my ankles and feet have gotten so stong I needed the hardest pointe shoe shank! My feet were too strong for the medium strength one, I was practically breaking it my going up en pointe! I was so amazed by how far I have come. I cant wait to see how far I can go. 

You are probably wondering now, what is the point(e)? Pun intended. In 10-15 years, I wont he able to do it anymore. What is the point of even dancing anyways? I am just going to lose that ability, just another thing that PD will take away from me. Dance for me is an expression, there are tangible goals that I can reach and be proud of. Its also nourishing to the soul, I feel the beat and let it flow through me. Its also sort of feeding the experiences that I never got because I was so sick as a teenager. All of my ballet classmates are teenagers. I am ten years older than most of the pointe class. But when I was their age, I was falling apart. My body was slowly deteriorating. I was losing control, I could barely walk let alone get to continue dance and get to be en pointe. In some ways, I am getting to do things that I missed out on in my younger years. It may be our of order and it may be temporary, but its here now and I get to be proud of my achievement. I get to enjoy feeling like I am floating through the air, the ethereal feeling that ballet provides. 

I am doing it for the love, and to have the experience. It isnt about how long I will be able to dance, it is about the fact that I danced and I loved it. Its about reaching a goal and being proud of that. Even if I can no longer walk in the future, I danced in the past, and therefore will always have that with me. 

Life is all about experiences. I am so fortunate to have had so many opportunities and so many incredible experiences. This is one experience I never thought I would have, and getting it is just exciting. Getting fitted for my shoes, sewing my ribbons, getting to rise up en pointe for the first time, I am loving and living every moment of it. 

I have been teaching meeting for learning at my church (Quaker speak for 'Sunday school'). It is something I am passionate about because growing up, the youth program really saved my life. It was the only place for many years that I felt truly open and happy and able to just relax and be myself. The Sunday discussions and the retreats and service projects gave me a safe place to have experiences and to find my own way. No one told me what I had to do and when to do it. I try to provide that same space and guidance for the amazing young people we have at our meeting to experience the world and their faith. They are activists and they are passionate and they are beautiful people and they teach me so much about life. Dance is in its own way a part of my spirituality. Its something that I get to experience now and it is a part of healing my soul, something that I really need at the moment. As I have written about before, medicine can fix your body, but when you go through a serious illness, you will not be okay if you dont spend the time healing the emotional wounds that it creates. 

Starting pointe just a month shy of 23, after having had Parkinson's for more that 8 years may sound crazy, and maybe it is. But in 10-15 years, even if I lose the ability to dance, PD will never take away my joy in dancing. Maybe when I have to retire my pointe shoes for good I will be sad. Maybe I will be angry that I ever fell in love with doing dance because it was just another thing taken from me. But I will remember performing. I will remember the feelings that I felt as I leaped across the studio, the sense of accomplishments when I finally got my splits. I will close my eyes and imagine my feet executing all the steps with precision and grace and my soul will be full. And I wont stop dancing. I may not dance the same, I may not dance as well, but that does not mean that it is any less valid. It is just different.

Me finally achieving my splits. it only took a year on daily stretching....

Am I taking a risk? What if I cant do it, what if I lose strength quicker than I thought I would? Risks are important to take sometimes, Pushing myself beyond my boundaries is what gives me that thing they call a quality of life. If I played it safe, I would miss these experiences. I might be content, but moments of pure joy are found in these risks. 

So I lace up my pointe shoes and rise up. 

Until next time, 

I am tired of metal detectors

I am up late writing this at 1:20 am on a saturday night, or sunday morning if you will. The reason I am up is my PD insomnia as usual, but ...