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How I'm Becoming Proactively Fearless With Cerebral Palsy

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For me this year, the focus of Cerebral Palsy Awareness Month is the importance of being “proactively fearless.” I define this as being active and especially fearless in my pursuit of understanding and resources, as well as being proactive and fearless in pain management, in facing my emotions and being transparent about my questions, issues, and needs.

As an adult living with CP, I often still struggle with making sense of what my body is doing and/or supposed to be doing as I continue to age. For most of my life, I set out to prove to the people around me and to the world that I am just as “normal” as everyone else. I expended so much energy trying to force my body to function as other able-bodied individuals around me, and in trying to dispel the stigma around being disabled. For instance, when I would go out and about with family or friends, I would push myself to walk faster, or walk past my distance limit and then go home to a private struggle with pain. When I needed help, I failed to articulate what I needed because of pride, but also because I didn’t even understand what I needed.

Since there is minimal research on aging with CP, growing up has been shadowed with confusion, silence, and frustration. When I was in high school and it was time to learn to learn to drive, I girded myself in pride and said, “well I’m just like everyone else, I can do this.” I failed to make my body operate like I wanted it to, which ended in a traumatic and shameful experience I kept quiet about for years. It took me a long time to heal from that and be able to tell myself it was OK. I don’t have to be like everyone else; I never needed to prove myself.

It wasn’t until I was boiling over with frustration and a peculiar type of denial and shame that I learned of a special driving school for people with disabilities. Growing up, my mother had always taught me to accept myself and love myself; however, after many years, I had to re-accept myself as a disabled individual. I had to accept that there are resources available to me and there is no shame in using them. Did I ever learn to drive? Not yet, but I am ever more proactive in my search for what is out there for me, and I don’t need to fear the feelings that rise up in me during my pursuit.

I spent so much time proving I was “normal” that I was rejecting myself as I was. I was afraid because I felt like I would be going backward, backward into the stigma of being seen as helpless or in constant need. The truth of the matter is that both abled and disabled people are in constant need. We need and will always need help, support, resources, etc. I had to tell myself no more judgment. I had to say to myself (and the world), yes I have CP and it’s OK. I had to say yes, I can do this and that, but not be afraid to say I am tired today and I can’t today. I had to embrace CP with love, though that doesn’t mean I have to like it.

There are days when I am exhausted, there are days when I am in a lot of pain , there are days when my legs beg me, “no, please don’t make me walk,” and there are days when I am angry at my body. As an adult I still struggle with making sense of all that. When I looked for a job after college, I felt like a failure because I couldn’t work at just any job. As people who are disabled, sometimes we need accommodations, and it is our right to ask for them and be granted them as long as they are reasonable. However, how are we supposed to ask for them if we don’t even know what we need?

I struggled for a long time not knowing what I needed, and sometimes I still do. Sometimes my needs change. Sometimes I may feel like I know what I need and someone might say, “Oh no, you don’t need that.” How do I as a person with agency and who knows my body better than anyone else reconcile that? How do I balance what I think is best for me and what someone else, a physician for example, says may be best for me?

This is where being proactively fearless comes in. In moments like this, I should ask for a second opinion, or third if need be. I need to say what I feel or ask questions when I have them, even if I am talking in circles and not making any sense. I need to be fearless, listen to my body and never give up on my pursuit of what I need. That’s what this month is about for me. It’s about being aware of my heart and body, expressing and sharing what I know and don’t know, asking questions, and acquiring knowledge.

It’s about saying look,I am disabled, and yeah, this thing has a medical definition, but that definition is not a rigid container around me. Sometimes my body might do something that I don’t know it’s supposed to do. As I age with CP, are there things I need to be aware of? I must probe that. Your body might do something that isn’t described in the research or literature; what then? Be proactively fearless. Proactively fearless means I don’t fear you, CP, nor do I fear you, body, and I don’t fear you, research. I will listen, I will probe, I will manage, I will take care of myself the best I can and I will love myself even when I have days and moments of not liking myself.

Sometimes people say things like “You don’t look disabled,” and sometimes people notice and say things like, “Why do you walk like that? Why are your hands like that? What’s wrong with you?” Hearing both of those things is a struggle, yet being fearlessly proactive or proactively fearless, I am constantly learning and steadily being. I am learning to say, “Hey look, I have this and it’s OK.” “Sometimes I trip and fall out of nowhere; my body does that, it’s fine.” Or “I walk really slowly, so please be patient.” Or “Can you help me with this?” Sometimes it’s saying disability doesn’t have a look. It’s just a title. It’s just a flexible, gooey definition. But this is what I have and I am here.

Sometimes proactively fearless is saying, not just verbally but in our daily act of living, I may not be wearing orthotic braces or in a wheelchair, but I am still disabled. Or I am in a wheelchair, but I am still beautiful and talented and abled. Sometimes it’s saying I can’t do that and it’s OK, or I can do that but I need to do it in this way. I am here and searching. I am lost and found. I’m not 6 anymore and my mom isn’t here, so I must seek people who can back me up. Proactively fearless is taking a mat Pilates class at NYU’s Initiative for Women With Disabilities. I don’t go to physical therapy anymore, so I’m going to see what’s out there. Sometimes, it’s about saying I hate my body today, can you give me the number to a social worker or counselor? That doctor didn’t help, do you know another one who may be more helpful? It’s about saying I have this but it doesn’t have me, and even when it hurts I’m here.

Cerebral Palsy Awareness Month and every day is about being proactively fearless in love. It’s about standing up for myself and advocating for myself as well as others. It’s about saying I’m hurting and healing at once, I am staying the same and changing at once. I am not here to serve as your inspiration, but I am here to be me, and I have a purpose and a destiny.

We are the same and different at once. Throughout my life, I’m going to meet someone else with a disability and hear their story. And I’m going to tell my story, over and over, everywhere and always.

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Thinkstock photo by Sara Berdon.

Originally published: March 27, 2017
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