Today is Halloween, one of my favorite holidays: Candy, costumes, fun! When I was a young girl I enjoyed visiting the theme parks at this time of year. The frightful mazes were such a blast. And scary movies are my absolute favorite to watch. I enjoy being scared for a minute but knowing that the fright isn't real. I haven't gone to a theme park in a long time now. Just thinking about having to ride in my wheelchair in such a big place makes me so tired. So for the past few years I have concentrated more on decorating my home, my pets, and myself and giving candy to the trick-or-treaters. I like costumes. I like going to the store and seeing the wide variety of personas I could transform into. I don't have to be the Wolf's butterfly today. I can be whoever or whatever I want. I can forget who I really am. I like the scary costumes of monsters and killers. Scary costumes make me laugh. I want to forget Lupus today. I'd like to forget it completely but there are pills I must take and there is fatigue that demands to be acknowledged.
Halloween brings to mind the fact that I am constantly wearing a mask. The face that I present to the world is rarely the face that I see in the mirror. There I see a monster of pain, both physical and emotional, and I often just turn away. But being that real with the world would leave me raw and I believe that it would also frighten the people that I deal with daily. So I pretend a lot. Pretend that I am happy, pretend that I am fine and well. I pretend to be strong and that I can deal with whatever is thrown at me. There is no cure for Lupus, okay. My hair may not grow back, alright. I need to have one and possibly two hip replacements. Sure. I need chemo for my kidneys. Not a problem. There's my brave face. My "I can take it" face. My "This won't stop me" face. My "I'm fine" face. This is my public face. But in solitude the masks fall off. The gravity of it all hits me and it hurts. The tears feel like they will never stop. Not as long as I have Lupus. I'm not feeling sorry for myself. At least not for very long. I cry to release. The tears cleanse the pain and the hurt. I am as weak as I feel and I am lonely and mad. The anger begs to take over and all these emotions make me nauseous. The real me naked in the light is too much. Sometimes I can't bear to see it so I pretend for as long as I can. I have to be strong in front of my family. They expect me to have a handle on this by now. I'm afraid I'd disappoint my parents if they knew the truth. So I pretend to be as normal as everyone else even as the pain in my hip feels like it'll crack me in half.
I've come to believe that the wearing of these masks is a better option than how I used to deal. I'm a private person most of the time therefore I am very guarded with who I let in to my world. This is due to the fact that not only do I not know if random people will want to hurt me because it's fun to them, but because I don't want to hurt people. Once someone cares about you they will hurt when they see you hurt. I once dated a guy who broke up with me because he said he was tired of trying to break down my walls. And here I thought I was protecting us both. I realized I could continue on that road and risk losing out on some really great relationships or I could break out my mask collection. It's important to know that although I am pretending I am not trying to be fake. I don't pretend that I am a whole other person with an entire fake back story. I am still me...just a stronger, healthier, more capable version. I don't wear these masks for myself but they are important to me. Recently I have allowed them to fall off in front of someone. I'm sure he thinks that I am crazy. I went from laughing about almost slipping in front of my mother and closing my bedroom door to collapsing in a pile of tears in his arms. My boyfriend has to be the strong one for me in that moment. I allowed him to see me at a vulnerable state and I wasn't sure how he would react, but he held me until I quieted down. He saw the real me. He told me he wished he could erase the pain I felt. He wished he could erase the Lupus out of my body. From that moment I have tried to be my real self when I am with him. For the most part I am but I don't think he needs to hear about it each time my leg hurts. So I pop a few pills and smile. I will manage to get through this, mask or no mask.
I have to wear these masks in my daily dealings with people. People are mostly polite and will ask a question or two once they realize I am ill. Then you have those that hear I have Lupus and expect me to tell them my life story and (gasp) hug them and become instant best friends. Even though I just met them. Even some doctors do this. I understand they are medical doctors and if they are informed on it then they have a basic understanding of Lupus. But the docs that I only see once a year and the ones that are never the same one because it's a teaching hospital and they change rotation, these doctors always ask my medical history. They hear Lupus and it's like they expect me to fall apart. Instead I put on my smiling mask and tell them that I am just fine. The masks help with these awkward situations. They hide the true depth of my feelings from the world but as I take them off I'm learning that it's not so scary to look in the mirror and see me. Lupus is the monster, not me. I'm still learning not to turn away from my true self. I can use my masks but I can put them away too whenever I want. Maybe that shows a little strength after all.
