It has been awhile since I have written a blog post, even anything at all! Now I have waited too long and I have too many thoughts ready to jump on the page. It is easy to become caught up in the ongoings of life after being away from several months but it is time for me to jump right back in! But first, I think it is important to get this out there for the sake of my own sanity.
Pretty much every day someone asks me a different version of the same question: “what happened to your leg?”
Now with my ExoSym, because it goes up to my thigh, it is: “what happened to your knee, did you tear your ACL?”
Sometimes, the question doesn’t bother me at all. I would rather talk about it than keep that person from coming up with their own assumptions about what is wrong with me. I can already see the curiosity bloom in their eyes so I really do welcome questions and try to be approachable when I have the energy. What has been getting to me lately, however is the staring–the lingering kind where they think I don’t notice them watching me as I walk away. For what feels like my entire life people, strangers have been aware of my disability. Some with kind eyes and kind words but others, with this blatantly obvious ignorance that still stings later on. Since coming back to the US just last week, I am overwhelmed with the amount of attention I get just for walking around as I go about my day. In other countries, I find my CP to hold less importance in social situations. To them I am just a tall blonde girl, CP or not. The word disability, descapacidad seems to hold less stigma. Maybe it is that, or maybe I care less as a foreigner but this–this daily feeling of “all eyes on me” is one of the most difficult things to cope with in having cerebral palsy.
I am tired of explaining myself, I am tired of feeling self conscious even when I know in my heart it is not a big deal. While this feeling comes and goes, it never really goes away. Some days, I feel PROUD to wear my ExoSym, to move around clumsily and look awkward as I move about because I am comfortable with who I am and my body. But it comes in waves and days like today, when I have a coffee in one hand and my dog leash, car keys and phone in the other, I feel about as graceful as a heterosexual male trying to walk in stilettos (no offense, guys.) I wonder if people without CP have to consider holding things in their hands while they walk as often as I do. With my device, I have so much body awareness now and what used to be such an easy, thoughtless walk on the beach (a way to clear my head!) has become so much more of a challenge in the process of acquiring a new, unfamiliar posture, gait pattern.
Today, I wanted to relax and just go for a walk with my pup Leo, but I felt like I couldn’t enjoy myself when I had to focus such external things like walking well and directing my dog. I could feel people looking at me as we walked past and I know it wasn’t intentional to make me feel bad (they were probably just looking at Leo’s cuteness more than me haha) but I couldn’t help but feel deflated by the presence of my CP. Today, I really wished for my legs to work smoothly and normally like everyone around me.
Life would be so much simpler that way.
-Katy