I have many fears—falling. Losing my loved ones. Being forgotten. Another fear I have is being alone. I’m sure many people have that fear, but for people with disabilities it may be stronger.
I wonder a lot: Who could ever love me?
I have the fantasy of walking beautifully, of the scars on my legs fading, never falling down. I think that one day I will wake up and my hip pain will be gone, that one day someone will touch my shoulder or hip and I won’t flinch away from their touch.
That fantasy will never be a reality. I try my hardest not to be difficult, but my reality is this—it’s hard for me when people touch me. I have hypersensitivity. I keep thinking that one day someone putting their hand on my hip will feel nice, or someone putting his arm around my shoulder. But what I wish for and what CP demands are often two different things.
I see older couples walking around and holding hands, and I always gush over it. But who will want to hold my hand if it means I might fall down. Who will be okay with steadying me for the rest of his life? I wouldn’t want any significant other I have to resent me. Will my husband be ashamed of having a wife with cerebral palsy? I don’t want anyone to settle for being with me. I want someone to marry me because he wants to, not because he feels obligated.
Who won’t think I’m ugly? The scars I have aren’t pretty. A lot of people admire legs. Not mine. My legs are scarred and deformed. I hate thinking of myself like that, but who wouldn’t see me that way?
Not to mention the emotional scarring. Often I let people see me at my weakest because I don’t have a choice. I may seem intelligent, but deep down I don’t have a lot figured out. I am extremely insecure deep down. Is there anyone who can tolerate my insecurities and baggage? I don’t know. I’m still learning to live in a body that works against me. Who will believe that I can’t sense where my feet are in space? Many people who share my condition find that their mobility decreases when they reach their thirties because spasticity and tightness is hard on joints. Who will want to vow to spend the rest of his life with a woman who might not always be able to be independent?
My days change. Sometimes I’m okay and my legs are manageable, and sometimes the pain and spasticity makes me want to break down and cry. Who would ever put up with that? My physicality varies. Sometimes my balance is great and sometimes it’s awful. My CP is unpredictable. When people date, they take time to get to know their partner. Who will take the time to know my CP, too?
My surgery has changed a lot for me, but I will never be cured. My nerves and muscles will never work together the right way. I might be able to hide my CP sometimes, but it always manifests itself eventually. I will never be able to move my legs like everyone else. Whether my surgery lengthened my muscles or not, whether my femur is straight or not, cerebral palsy will always be a safety concern for me.
I don’t want my significant other to automatically see cerebral palsy when he looks at me. I’ve never wanted to be defined by the one element of my life that makes me feel the most fragile. But if my partner ignores my CP, he is ignoring a part of me that will forever be in my life. Whether I always wish that my cerebral palsy was there or not, it doesn’t matter. I have to keep CP in the back of my mind to know my limits. I hope my loved one will understand that while I don’t want him to see me as my cerebral palsy, I hope he accepts my cerebral palsy, too.
I hope that I will be able to find a partner who loves me for all that I am. I hope that I will get married to the love of my life who won’t be bothered by all the challenges that living a life with me threatens to have. I just want to be loved, regardless of what I can or can’t do. I’ve gone through a lot and have baggage that no husband would expect. I’ve dreamed of a fairytale-type love story. I know that I’m not the typical girl in those stories, but maybe it can be different and still be beautiful anyway.
