September 18th, it was a Monday. Monday nights in the fall had me either at home tuned into ABC or in the ballroom as a audience member of Dancing with the Stars. This Monday was different though, because this season held something others did not, fate.
It was season 25 of the reality series and my first time attending a premiere night. There was a change in the ballroom from gold to silver celebrating the shows 25 anniversary. I sat there as anxious as any season but this time with a bit of curiosity. Valentin Chmerkovskiy. A name that’s a mouthful, paired to a man with a even bigger heart. Sure, he is a incredible dancer, but his countless acts of kindness and the way he treats a complete stranger as if they were family, hit me hard. Currently, Val holds the place of the Pro I vote for each season despite his star pairing, but this time around he was paired with someone who had my full attention and votes. His star was ESPN TV personality and Paralympic gold medal swimmer Victoria Arlen. Victoria was walking the miracle mile. At age 11 she was struck with not one but two rare conditions, transverse myelitis and acute disseminated encephalomyelitis. Victoria quickly lost her ability to speak, walk, or move. Not to long after, slipping into a complete vegetative state with doctors writing her off to her family. Almost 4 years after hope hit. She started to regain mobility, was able to speak. While she regained most all abilities back she was still confined to a wheelchair. That didn’t stop her from landing the ESPN spot or winning that gold medal. Soon the word “confined” wasn’t going to fit in her vocabulary. With sights of one day dancing on DWTS, Victoria and her Project Walk Boston trainer John Minahan got to business and well as you can see in the photo below, “confined” was out and “conquer” was in.
Photo Courtesy of (ABC/Craig Sjodin)
This is why I showed up that night with that curiosity. It was rushing through my veins, burning. I wanted to know everything of such a recovery. Remember when I said fate? Fate was about to align in ways I could of never imagined.
The night was wrapping up. Press line setup on the ballroom floor, the production crew rushing around for post filming. I sat close by in gold lamé (It’s a ballroom dancing show. Lamé is totally acceptable) as some audience members were offered to stay for extra filming. The Pro’s and their partners made there way to the stage near by for their segments. I was watching one of the pairs when I hear that New York/Russian accent “Hi, Crystal”. Val leaned in for a hug as he prepared to introduce me to his partner. “Victoria, this is Crystal. She comes out to support me a lot”. In that moment I think Val knew I could benefit from talking with his miracle partner. We had a quick chat regarding my injury level and my interest in Project Walk before her cue to stage. She then pulled over her mother Jacqueline who started up the Project Walk Boston location. Before I knew it the lights were dimming in the studio, audience had cleared out and it was just us two still immersed in conversation. Stars were aligning. I felt more love and concern on where I was with my disability within that conversation then I have in the last 15 years since my accident. She had answers. She had hope. Hope was something I let go of a long time ago. As I type the next part of this post, I am still 9 months out holding back the tears just talking (typing) about it.
I thought at the time I was in a good wheelchair. It looked like others I had seen. It had glitter in the paint. I thought I was chillin. Turns out not even close! Jacqueline’s first question was “Is this your main chair?” I replied with a questionable “Yes?..” The look on her face I will never forget. She started to move parts of my chair. Pushing on the back “This chair doesn’t have the back support you need.” That was just one concern. My chair concerns lead to how I travel. At the time I was relying on friends and family to carry me from car to chair. At the studio lot I relied on the on-site paramedics to help with transfers. Shout out to Sarah and Sam! Ya’ll were a real one! From there lead to Project Walk. I told her how interested I was in the program. I told her how therapy was always a “There’s nothing more we can do for you.” from insurance and PT’s. Jacqueline was not having it. Any of it. Where the conversation shifted next changed EVERYTHING. She wanted to help. She wanted me to have a chair that was fitted for me. She wanted me to have a van with a accessible ramp. She wanted me in a place where I wasn’t told “There’s nothing more we can do for you”. I was fighting back tears. I was thinking…is this for real? Within days Jacqueline and Victoria had things moving at a rapid pace. Victoria’s Victory Foundation and Project Walk location were east coast, I was west coast. So they made a call to the Hargrave family at the Be Perfect Foundation who are here on the west coast and own the Project Walk (now the Perfect Step) location. It was week 6 of the competition. The Hargrave’s were guests that night and once the taping wrapped I was introduced to them. Time to insert the ugly tears, as there was many. Hal Jr., his mother Lorie, and father Hal Sr. Hargrave said they wanted to help. I couldn’t believe what they had to say. They were going to get me a new fitted wheelchair. They offered their foundation accessible van until I can raise funds for my own, and here is the biggie! They gave me a scholarship to train at the Perfect Step! Within a week I was traveling in the van and even arrived to the following weeks taping on DWTS in it. First time I didn’t have to depend on EMT’s for a transfer. It was a new found freedom. A few months later I started training twice a week at the Perfect Step. Now 5 months in I am thriving! Regained core-control, stood for the 1st time in 15 years with the help of a standing frame, and can propel my wheelchair. The wheelchair I was graciously offered. Built to order, fitted to me, with the appropriate back support, and grip wheels to help with propelling. I was in a whole new world filled with hope and knowledge. Two things I was searching for for years.
I believe in fate now. I believe in hope. I believe in the kindness of people. I sit here now, stronger, happier, unconditionally thankful, and free. I continue to push myself in my recovery. I devote all my time and energy twice a week at TPS. I look for ways to give back in the way everyone in this story gave to me. I am a new me and constantly becoming a stronger me.
THANK YOU: The Hargrave Family, Victoria & Jacqueline Arlen, and Val Chmerkovskiy. You lit a fire in me!