Who are you? That’s a question that gets asked of us our whole life. We go to a new place- the first time we talk is to tell about ourselves. This happens in every block of life: school, college, work, extracurriculars, etc. Typically it is a very easy and simple question- as humans we love talking about ourselves. But what if the first thing you say is that you have an illness or pain? Are you okay with that? Some people are. I was until I took time to look at my life. Now, I’ve got no freakin clue.
Once I came home from treatment in Maryland, I starting separating my life from my illness. Yes, I still have the pain- but that doesn’t mean my entire life has to revolve around and be intertwined with the pain. When this separation started, I could feel myself getting very anxious. Kind of that feeling when you are going to graduate from college and don’t know what the hell you will be doing with your life. However in the moment, I didn’t quite understand why. Not until I was asked by my therapist who I am (yes, hi I have a therapist, everyone should get one with the world we are living in). She cut me off the minute I said that I was a CRPS fighter. She told me to explain myself and what I enjoy doing without ever speaking about my condition. Holy shit. I was completely at a loss for words. In that very moment I had a complete realization that everything I did in life revolved around my condition: friends? only those who accepted my lack of “hanging out”, activities? only those that I know won’t make CRPS worse (there were very few), foods? those that didn’t make me nauseous, clothes? only the fabrics that didn’t hurt my skin. The list goes on and on.
When I came to this realization, I became incredibly frustrated. I could see the issue at hand and I didn’t want it to be like that, but I had no idea how to change the mindset and begin living for me again. Think of it this way. From the minute you wake up, to the minute you go to bed, you have someone standing over you constantly yelling. No matter what you do, they do not stop screaming in your ear. However, you have figured out how to make the screaming quiet down. That person screaming becomes your entire identity. They are controlling who you are and what you do- you are just the puppet. That person for me is CRPS. I argued with my therapist and told her that I’d love to be just Alexis again, but I can’t do it with the pain and fear constantly there. I remember her telling me to be patient and take baby steps. Man did that piss me off- but she was so right.
One day, I was hanging out with a very close friend of mine. I told her that I didn’t know who I was. “I am having an identity crisis at 22. I don’t know who I am, what I like to do, who I want to date, what I want to dress like, and on and on”. I explained that this is not what the typical experience is like for 22 year olds. While explaining this I realized that every question I get asked about me, I typically answer with excuses from CRPS or I refer back to when I was 16 and completely healthy. If there was a question like “what do you like to do on the weekends” I would respond with go to the mall because that’s what my 16 year old self would do. Now let’s be real, if you know me you know I would still do that now-but you get the point. I never had that teenage/early adulthood phase of experimenting with life that everyone else gets. That realization physically hurt. I felt trapped in the cage with CRPS coated barbed wire. That was until I had the most incredible experience just this past week.
My sister has danced her whole life. Honestly, I’m not the biggest fan of even watching it- but she is passionate about it and I 100% support her (if you couldn’t tell we are bffs). I just never had that complete connection with movement that I see in her eyes when she is dancing or even talking about it. I believe that there is always a reason why something is in our life- and this is no different. About 2 years ago, Olivia introduced me over social media to an incredible women named Bailey Vincent. She is a dancer and dance teacher. But the difference with her from other teachers is that she has some very serious health issues. Bailey knew a star I was obsessed with: Justin Baldoni. Long story short, Bailey asked Justin to surprise me with a video from him to help lift me up through my tough times. After that, Bailey and I kept contact over social media. She would be kind and listen to my questions and rants and she was also someone who I looked up to and could see as someone who is both sick and successful. Despite Bailey going through her many scares with her illness, she took the time out of her day to help me with my issues. All the meanwhile, Bailey continued dancing, owning her own company, writing a book, raising kids, and so much more. This alone gave me so many takeaways for how I want to live my life. But that isn’t even the best part.
About a week ago I got a message from Bailey telling me about this event she had in just a few days. This wasn’t just any event. This was the premiere showing of HER episode of CW’s “My Last Days” directed by both her and Justin Baldoni himself. If you don’t know the show- first, what are you doing and second- LOOK IT UP. Not only was this a premiere, it was a premier happening at the Kennedy Center where she would get her dream of dancing on the Kennedy Center stage.
Now I can sit here and write about how inspiring Bailey is-because, well she is- but that is not the point of this post. What I witnessed was something that lit a fire under my butt and a lightbulb in my head. The special thing about Bailey is that she does not identify as her illness. That is not the coolest thing about her. It isn’t who she is. She is a mother, friend, director, blogger, overall cool human. When she introduces herself she does not lead with her condition(s). At her event, her and her dancers started performing- and the tears flowed.
I noticed that in that moment, not a single person on that stage was their illness/condition/struggle. They were beautiful dancers and strong women. How do they do that? How can they possibly be something more than their condition? As my tears flowed (and I tried to hide it from my sister) I realized it is because they found themselves through each other. Through a community. They all had something dealt to them, but that doesn’t become their identity. What a mindset-altering night I was blessed with.
So, here I am-looking to find my identity. Yes, I have a condition called CRPS. That does not mean that is who I am. That is just what I am forced to bring along. This condition no longer takes the driver’s seat of my life (Dr. Effie if you ever read this, your metaphor finally clicked). Instead of this explore of self journey being horrific and scary, I am going to imagine it the way that Bailey would explain it if I were to ask her right now. We have scars. We have fear. We have illness looming over us. But that does not mean we do not have a personality, desires, dreams, hopes….. Just like Bailey, I can learn from my condition. CRPS can help me decide what I want to do with my life. But that is all I am willing to let it do. I cannot wait until I can introduce you to the new me. I bet she will be incredible and living according to herself- no longer in the shadow of flames.
Please check out Bailey and all she has done. Consider donating to her company as well as tuning in to her episode of “My Last Days” on the CW network. I bet you will be changed too.