Learning to Tell My Story as a Woman With Cerebral Palsy

It was after another defeating job interview, trudging down the rainy streets of Chicago and wondering what to do next. Discouraged and needing to decompress, I found a nearby Starbucks and dove into Mandy Hale’s book “Beautiful Uncertainty,” about graciously embracing the unknown and doing uncomfortable things for a greater purpose. I instantly saw myself standing up in front of a large crowd and talking about the physical challenges that I’ve overcome, although the location and audience were unclear. The vision brought tears to my eyes, and has stuck with me as I’ve navigated the obstacles of trying to break into a difficult career field. As time has gone on, I’ve begun to wonder if being involved with marketing and social media is only a small piece of a larger puzzle.

My life in itself is unconventional, especially living with cerebral palsy, a movement disorder that was the result of my premature birth. At some point a part of my brain was deprived of oxygen, the part that tells me how to walk and move correctly. I do physical things a little bit differently, use up energy quickly, and my muscles tighten up frequently. Some notice it right away, and others don’t find out until the subject comes up in conversation.

Acceptance has occurred in phases; my parents were very open about the reality of my circumstances, but encouraged me to work hard and never give up. As a teenager I began to resent it, believing it was the sole reason I struggled with making friends and having a social life. Once I got to college, I thought I could ignore it completely, but it became the constant pink elephant in the room that caused ignorance to rear its ugly head. I learned how to be independent, but mostly because I was afraid of my needs getting thrown back in my face. It was as if I had something to prove, and I had to prove them wrong. To this day I have to work at not living so defensively, and allowing myself to be loved.

At 25 years old, I do what I can with the best of my abilities, although I’ve become more aware of what is holding me back. I’ve been told I can be a positive example of what it means to rise and thrive while having a disability, but the task itself is intimidating. If I discuss it openly, I’m either throwing a pity party or trying to take advantage of certain privileges. If I’m silent, I must be ashamed and am trying to avoid it at all costs.

I feel honored to be considered an inspiration, yet have never liked the idea of telling people how to live or what to do. I’ve never been in their shoes, so who’s to say they’re not already doing their best? I don’t want to make blanket statements when we all experience life on different levels. But telling one’s story is not the same as preaching a lifestyle; I can tell the truth and let those listening take away whatever they want from it. My goal is not to change the way anyone thinks, but to at least give them something to think about.

It is said that to tell your story, you have to own it. But how do you own it without making it your entire identity? I’m still not entirely sure, but it might involve acknowledging what is, and figuring out how to boldly move forward. There are things that I debate whether or not to share in my writing or online because I don’t want to reopen wounds, or hurt others involved. I want to be authentic and genuine, but I also have to decide what is sacred, what truly is mine to tell and what isn’t.

My biggest fear is being completely vulnerable (especially with a romantic partner), only for that person to walk away because my challenges and limits are too much. Yet I also find peace in my faith, in how God made me; it’s not about “fixing” myself for others, but allowing my heart to be changed and molded, and being bigger than my body. I am not a victim, but I am not only a survivor. More than anything, I’m resilient. I’m a child of my Creator, and a human being that has both much to offer and much to give.

I am a writer by nature, but I feel that my ultimate passion and purpose is to connect with those around me and build them up. It’s definitely scary at times, but it comes from a longing of wanting to know and be known. It might be through writing, public speaking, or having a simple conversation, but if I can help at least one person in some way or another, then the risk of rejection or criticism is worth it.

My story is not complete; it is always evolving through different experiences and new perspectives, which gives me the confidence and strength to talk about it. I don’t know what my future holds, but I intend not to waste the gifts and opportunities that are given to me.

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