It was a Sunday and Mom wanted to go to church. Though I’d been baptized Catholic and received my first communion, we rarely ever went except for holidays and whenever the family had the urge to go. On this particular Sunday, the priest was talking about the anointing of the sick, and at one point I looked over to see that tears were running down her face.
“Mommy, why are you sad?”
“I just want you to be better, sweetie,” she said. I was fairly young at the time, only six or seven, and had no idea what ‘better’ meant.
“For anyone who would like to receive the sacrament, please come forward.”
I noticed a boy whom I went to school with that was getting up to walk. He had similar physical challenges, but also used crutches to get around. With Mom’s encouragement, I made my way to the front as well.
“I anoint you in the name of the Lord,” said the priest before giving me a blessing with oil. I didn’t feel any differently, but I certainly felt good enough to tell people afterward at a family gathering. From what I could gather, healing, particularly in a religious context, seemed like a pretty big deal.
For as long as I can remember, my entire life has been about my body. After an unexpected premature birth, I was diagnosed with spastic Cerebral Palsy, a physical disability that affects movement and posture. In my particular case, the spasticity indicates increase muscle tone, where my legs in particular tend to stiffen to the point of being uncomfortable, or even in pain. I did physical and occupational therapy, and had the occasional surgery, along with IEP meetings for school. I wore orthotics (leg braces) up until the age of ten, which I didn’t particularly like, but everything else felt normal. I knew that I was different, but it didn’t start to bother me until the people began to indicate that it should.
I struggled with body image, but not in the typical sense of wanting to look a certain way. It was more about what people couldn’t see, the challenge of trying to appear fully able-bodied, yet knowing that I wasn’t. The early teen years were rough, with adults telling me to “walk right” and online bullies taunting that my legs needed to be “fixed.” I didn’t know who to trust or how to connect with my peers, mostly because I didn’t have the language or skills that went beyond trying to blend in. That kind of self-loathing and isolation went from the age of thirteen through high school, and would take numerous attempts to come out of.
Attending the University of Iowa was a game-changer, opening doors for being physically independent, and cultivating an adventurous spirit. Iowa City is a vibrant literary community intermingled with Big Ten culture, and I adored it. One of my favorite things to do was to just walk around campus, whether I was going to class or clearing my head after a long day. I loved going past the Pentacrest, finding new coffee shops to study in, or just checking out the nooks and crannies of the place. With John Mayer in my ears, I’d look around and think to myself, I’m really here, and this is actually happening!
But with romanticism came naiveté, believing that new chapter meant leaving certain aspects of my life behind, including my disability. I wasn’t embarrassed or ashamed, but I also wanted to do the things that typical college kids do without any disclaimers attached. Yet when you need help up the stairs or start dragging behind on the way to a football game, people notice. And then when you start getting physically sick due to exhaustion (from staying up ridiculously late on consecutive nights), people get worried. And while realistically this could happen to anybody, ignorance made it easy to assume that it only happened to bodies like mine.
What began with the fear of missing out became the pain in getting left out, especially when it came to going out. But even when it wasn’t about the drinking, no one really understood why I wanted to go to the bars so badly just to dance, or experience the excitement of going to a party. I became extremely defensive and frustrated, which led to a lot of confrontation and eventually what felt like rejection. Of course I still had my share of fun, as I’d realize that there was more to friendship than just floor mates or being in a sorority. But the conflict stayed with me, where asking for both what I wanted and needed was nearly paralyzing.
After moving into an apartment the following year, I broke down and decided to give therapy another try. One of the best things I’ve done for myself, it helped me to start processing and facing issues that had been building up since childhood, which led to reconnecting with some of the best friends that I’ve ever had. By the time I turned twenty-one, I experienced a burst of confidence and was ready to take on the world again.That confidence would sustain me as it became more difficult to fight off the message that my body was the best I had to offer, and the one thing that mattered.
Adulthood is one of those things that you’re always adjusting to, while constantly getting advice and then trying to decide what to take to heart and what to ignore. Thus far, my professional aspirations have largely focused on building a career in marketing, despite the objection that living in Chicago wasn’t realistic, and that I should be willing to take any job that pays money, regardless of location. Simultaneously, everyone from my primary care doctor to random strangers would urge me to be an example, to write in order to motivate others in similar situations (in terms of disability). It was well-intended, but did not sit well with me.
Once again, I was stuck between the able-bodied part of me, and the handicapped (I identify as such because I feel that it fits best with my particular set of circumstances). I grew up with pseudo-sentiments such as “I don’t even see you as having a disability” while still experiencing the self-consciousness that comes with anything that requires fine motor skills or exceptional balance. Some might think I’m crazy for hopping trains and buses to either work or socialize, but I’m fine with taking the scenic route if it means having the ability to do my own thing and be my own person.
Self-love has always seemed a bit hokey, I’m still figuring out what it means for me. So far it’s been a balance of loving deeply and also setting boundaries. Intentionally setting goals and pursuing dreams, but to also make the most of what’s right in front of me. The ultimate act, I believe, is doing what’s best for you without explanation, justification, or validation.
And that’s not easy to do when growing up in a culture that refuses to hold space for your uniqueness, and allow you to tell your own story. The battle I’m fighting against is not in fact my physical makeup, but the fear and insecurity that’s projected onto me due to a lack of understanding about it. I’m more focused on finding alternative solutions than I am on “overcoming” anything, whether that’s adaptive skiing on the next level up from the bunny hill, or deciding that zip lining is a one and done thing. I ultimately cannot control how people look at me, but I can decide what empowers and fills me. Strengthening my mind and soul is just as important, whether that involves reading, listening to a podcast, attending church, or spending quality time with friends. If I don’t get spiritual nourishment from the inside out, everything else is moot.
Living with a disability is neither good nor bad, but a reality that many simply have to deal with. I do not need pity, nor do I need to be pushed, and I refuse to set my own well-being aside in order to make people comfortable. I am still learning about ableism, identity, and language, which is just as much of a fluid experience as Cerebral Palsy in itself. The biggest struggle often involves being both soft and strong, and not allowing the footprints of those who haven’t walked in my shoes to get the best of me. How common it is to forget that what looks inspirational on the outside is a human being who wants to be just that; one who occasionally longs for her compassion, heart, and creativity to be recognized as assets rather than hindrances.
I don’t begrudge those that urged me to be anointed all those years ago, because they were acting from an emotional and limited perspective. I believe in the power of prayer, but also in the power of taking action and recognizing that healing doesn’t always happen the way we think that it should. It’s important to acknowledge that people with disabilities have their own agency, and to honor such without letting personal prejudices or fears supersede it.
It all might seem a little bit selfish, but since being handicapped affects me more as an adult than it did as a child, I kind of have to be. I’m not trying to fit into the world anymore, yet I still want to make an impact despite it not being built for people like me.
And right now, maybe that’s just learning how to be self-compassionate, and figuring out the rest as I go along.
Written by Alyx Koch Photo credit: arose_45 Born and raised in the Illinois suburbs, Alyx has a heart for the city and an even bigger heart for people. When she's not writing or honing her skills as a marketing specialist, she enjoys exploring, dancing, reading, photography, cooking, and watching her favorite sports and movies. She loves meeting new people, so feel free to connect with her on social media and through her blog.