Worse Than a Bikini?

If you could change one thing about your body, what would it be?

I’d ask for different hands, unlike my teenage self who would’ve said she wanted a flatter stomach.

I distinctly remember the day where I realized how ashamed I actually was of my hands. My mother had just had surgery for a deviated septum and asked me to go with her for her follow up doctors visit. I sat in the waiting room crocheting (not knitting, which involves two needles and which I loathe doing) as we waited for her name to be called. An old lady came out into the waiting room then. Her eyes locked onto the hat that I was working on. “Oh, I used to crochet when I was younger. I miss it a lot, but I’ve got Rheumatoid. She lifted a hand off of her cane to show me what she meant. Her hands were completely deformed (I think it’s called swan neck deformity), mangled much in the same way that you would see in a cartoon where the character’s hand was run over by an army tank. I couldn’t stomach it. My mother continued talking with her, while I sat there trying to prevent a panic attack. There was a lump in my throat, no air in my lungs. If she stood there any longer, I was going to have to leave the room to hyperventilate.

She finally left. I was ready to faint. My mother saw how red my face was, how puffy my eyes were from holding back tears. Seeing pictures of something is one thing. Seeing it in person is a whole different ballgame. “Medicine has come a long way,” Mom said, knowing what I was thinking.

I stretched my hands out in front of me. I wasn’t in remission then, and I was living with the idea that remission would never happen and that my joints would continue to disintegrate. I studied my hands intently. They were swollen and red from the heat my joints were throwing off. There were dips in my knuckles from where my finger joints were separating. If I moved one finger, they all had to move from lack of flexibility (it’s still really hard to flip someone off). There was no chance of straightening my fingers out, so I was walking around with monster claws. Even though I’m in remission now, the damage that was done to my hands is irreversible.

Is there a little bit of vanity here? Yep. I don’t get manicures or wear rings because I’m so self conscious about my hands. I’d rather walk around campus in a bikini. That lady taught me something important though. Why do we let our fears about how we look  prevent us from doing the things we love? I don’t know how she feels about the way she looks and never will, but she sure as hell wasn’t happy with the fact that she couldn’t do something she loves anymore.

I worry about how long my hands will be functioning. Will I have to stop crocheting one day? Will I need to give up my jewelry business? What about chopping onions for dinner?

I don’t know what the future will bring. My boyfriend asks me all the time why I keep picking up new hobbies. Why not? If I’m not gonna have use of my hands in 40 years, then why shouldn’t I try as much as I can now?

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4 responses to “Worse Than a Bikini?

  • Sarah Goh

    Hi, you are brave. Wishing you a bright future because you have a strong heart! 🙂

  • Karla Stephenson

    This right here is what sent me into a deep depression after my diagnosis. There are so many things that cross your mind like this. I am still struggling with the idea of can my husband and I conceive and even if we do will my body manage all the way through to child birth. Terrifying thoughts.

    • Alyssa Pierce

      I think that’s why dealing with the unknown is sometimes more terrifying than a definitive, “Yep, x, y, and z is going to happen to you in a few years.” I worry all the time about whether or not my husband (said boyfriend in the post above) and I can have kids one day. Could I take care of those kids? Personally, I’d rather know now that I can’t have them than live with the false hope that I can, just to find out years from now it’s not possible.

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