THE BLOG

How My Progressive Disease Taught Me That It's Okay to Be Human

03/12/2015 11:30 am ET | Updated May 12, 2015

As seen on the FSH Society website

My body constantly changes and at times, I feel like there's nothing I can do about it.

Every time I lose another piece of mobility, my mind flashes back to memories and experiences of loss contributed to my body and this condition. I break down because sometimes it's just too much to handle. It's a crippling feeling to realize that you're doing everything you can to halt a progression and it still creeps in. I refuse to be in denial, but I also refuse to feel defeated and hopeless about my situation.

It's like experiencing a slow and steady paralysis over time throughout the body. And time sometimes seems like the enemy, but it's not. Time is just a mere excuse and a place to put my blame and anger towards. I may experience physical paralysis, but by no means do I need to feel mentally and emotionally stuck and alone.

One of the last times I ran was when I was 9 years old. I get flashbacks sometimes of running across the soccer field I use to enjoy during the summer as a child. Although I could run, I could never keep up with my friends, and that's okay. I enjoyed the feeling of being free and moving every part of my body in a fast way -- feeling the breeze wisp by me and not thinking about putting one foot in front of the other, it just naturally moved that way. It's so easy to take for granted your physical state and the ability to freely move.

I'm lucky to still have the water; that on my worst days I can completely let go of my body and float. I can move my arms the same way I've moved them for years, one stroke and pull at a time. It's repetition that hasn't changed; something that I'm incredibly grateful for. I can just slide into the water and go; putting my brain and body on autopilot as they work in sync. I don't need to think; I can even close my eyes and trust that I'm still moving; that I'm still swimming. With every stroke I can feel the water brush by me and push away every pressure and worry. The water is soothing. The water is my sanctuary. The water will always be my home, regardless that it's now incredibly hard to stand and walk.

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Left: From 1999--local diving competition. Right: From 2010--getting carried out of the water after completing a 1.2 mile swim sponsored by the Challenged Athletes Foundation

Yes I have FSHD (facioscapulohumeral dystrophy), a type of muscular dystrophy that slowly takes away my mobility. I may lose the ability to fully blink, write, and breathe with ease. There is currently no treatment or cure, but these facts will never stop me from pushing forward, living out my passions, and connecting with others. My condition makes me vulnerable and creative in adapting to an ever-changing body. And I'm not sure how much more I can lose, but that doesn't matter. What matters is that I choose to live an ever-fulfilling life.

Facts are facts, there's no doubt about that, but the human spirit is truly immeasurable. No matter how immobile a person may be, the human spirit can light up a room. The human spirit is more powerful than the adversity we face. My spirit is bigger than a scientific diagnosis and weak muscles.

And as fearful as it can be sometimes, I've realized that regardless of my condition, we all experience the same emotions throughout our lives, just at different levels and ways- pain, anger, loss, fear, hope, happiness and love. As humans, we're designed to embrace each other for who we genuinely are. Hiding the loss and disappointments associated with my condition only disconnects me from the people in my life and automatically presumes that I'm the only person that has experienced these feelings. The last thing we all need is to feel emotionally alone.

Despite my unique circumstance, I'm connected to others because of our ability to feel emotion. I may never understand a specific circumstance a friend or loved one is going through, but I understand what it feels like to fully embrace every emotion along this journey. And through this perspective, we're all connected and really, not as different as we may initially think we are. Emotion unites us, no matter what difference we may be living with. Experiencing emotion and conveying it to others is the basis of being human.

My body is incredibly beautiful and strong for living out each progressive stage with its own dignity. Yes, I continue to live through unique struggles and unforeseen circumstances, but my God do I live an exciting and fulfilling life.

And at the end of the day as I lie in bed, I'm grateful to be human.

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