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U2FP's Blog > Keeping you current on the movement to cure paralysis

Betting on Us

Who are we when we lose the things that define us?

I’ve been asking myself this question since I became a quadriplegic on July 4th, 2012 and it continues today, evolving as life’s ebbs and flows bring changes, losses and its many forms of heartbreak. This question, along with the search for a cure, led me down a path with our documentary film, SUBMERGED, over 3 years ago and is proving to be the unending question; the anti-stagnation, personal growth-instigator as we keep waking and embracing each day we are given. It’s what I’m trying to get to the bottom of both artistically and personally.

I had so many ideas of what I would write about this month- subjects that I plan to write about and that are near and dear to my heart. But the fact of the matter is, there is one thing that has been dominating my thoughts and emotions these days.

I don’t know how many of you follow me on social media, but if you do then you know that my Dad, Spencer Charles Peterson, passed away on October 25th, 2019, at the age of 71.

After fighting (ILD) interstitial lung disease for less than a year, we discovered that he had Stage IV lung cancer. Chemo was going well, or so we thought, the cancer was shrinking. Little did we know, at the same time his ILD was getting worse.

Opening night for A Cripple’s Dance came with a phone call that my Dad was back in the hospital - a visit that I took for granted as just another routine procedure to get fluid out of his lungs. I performed for the first time post-injury without hearing his voice cheering me on from the audience, as I’d always heard throughout my childhood and my many days onstage.

Each night that passed I kept hoping that the next night he might make it, foolishly expecting to hear he was fine. The shows came and went, a blur of excitement, fear and denial all wrapped in one bittersweet package. And Monday arrived with a phone call from my brother, Nick, telling me that our Dad was dying. By Friday he was gone, and a piece of my identity left with him.

Just as I was blessed to be born with an able body, I was also gifted an incredible father. I came into this world with someone who loved me unconditionally and who supported me and in ways that will affect me for the rest of my life. What a remarkable gift that is.

I remember when, at 16, I asked him about going to an arts high school, where I would later graduate from, and he looked at me and said, “A part of me is scared to let you chase your dreams, but I will support you in whatever your dreams are, because I wish my Dad would have done the same for me.”

He didn’t want to be the father that dismissed and belittled my vision for myself, even if it was scary to take a chance. He wanted me to know that he believed in me and that he would always have my back, even if my dreams meant both of us were taking a risk, and even if that meant letting me leave the nest 2 years earlier than he would have hoped, to pursue dance. As he said on our last walk together, while giving me advice, “Life is a calculated risk.”

He always had great little gems like that:

“Never sacrifice your dignity.”

“Be the job, big or small, do it well or not at all.”

“Worrying is like paying interest on something you may never buy.”

These are some of the classic sayings that I heard throughout my childhood, wise words that had been passed down through generations and that he held near and dear to his heart. Words that had been his guiding light when his mother died very young and when his father wasn’t there in ways my Dad wished he could have been at times.

So here I am, almost 8 years post injury, and faced again with the wildness of grief in ways that we just simply can’t prepare ourselves for, falling back on his words, his wisdom, his example, and his love to carry me forward.

I mean, without being all ‘woe is me’, let’s be real — we’ve all lost so much, those of us who’ve dealt with paralysis. Life has changed a lot since ‘that day’. I find myself in a place of deep loss again, and although completely unfamiliar, just as devastating. I mean, really, we ALL go through crap in life — THAT’S LIFE.

So once again I’m asking myself:

  • Who are we when we lose the things that define us?
  • Who am I without my Dad here with me?
  • Who am I without the use of my body? My hands? My legs?
  • If I’m not a dancer?
  • If I can’t make love like I used to?
  • If I can’t take care of myself?…

These things that seemingly define us, they’re not permanent.

My Dad had always been a central part of my life and my identity, with a similar gravity that our bodies were. Defining, permanent, a fixture that held us up and supported us from Day 1. And then, poof, it’s gone.

Cue reinvention.

I’ve realized that while I’m in the middle of this rawness, I’m strangely closer to my own essence, my truth, my most real, vulnerable SELF. And unexpectedly, what a gift that is. I feel myself exploding creatively and emotionally in ways that are propelling me forward and connecting me more deeply to my purpose.

I find myself back in a place where my heart is so broken, but I’m not scared this time. Even though I don’t have my Dad here, I’m still his daughter. And even though I’m paralyzed, I am still me.

This experience has opened me up to the importance of sharing the whole truth, despite how scary that is.

Through my story, the goal of SUBMERGED is to tell the collective experience of living with paralysis. I want people to know what we want back, what we miss, what we’re not getting, how we’re misunderstood or stigmatized, how we want to be seen, what we deserve…all of it.

I started out making this film thinking that we were hitting the road and talking to researchers about what’s happening within the cure research climate, and that’s part of it, and that part was amazing. What I didn’t realize is that it would be told through my personal journey in order to truly connect with people and create real change.

I want to hear from YOU. I want to hear what YOU want. I want to be a voice for you all, one of many voices. I want to do my best for you all with this film.

So PLEASE, reach out to me, connect with me, follow me, so we can grieve, celebrate, and reach new heights together. Let’s take a risk together. Let’s bet on each other.

I love you all. I’m grateful for you. I see you.