“A truth was being revealed to me: that I had always tried to attach myself to the light of other people, that I had never had any light of my own. I experienced myself as a kind of shadow.”

Zadie Smith, Swing Time

I’ve always seen myself as a side character. The side-kick cheering on my friends, The Stars. Anyone I meet, really, is The Star. I even imagine strangers I meet for a second on the street to be spectacular people living spectacular lives. I make a brief appearance in their life movies and then – ffwoop—

I’m forgotten.

Perhaps this is a byproduct of hiding my Self from ages 9 to 26. Maybe I wanted to be forgotten because I was too ashamed to be seen. I believed myself too unpalatable. That’s why people like myself aren’t centered in film or TV. So how could I ever be The Star?

I think I struggle, too, with this idea because I am so lost. I don’t have a career. I don’t know what to do with my life. But I’m good at encouraging others. I often feel like my purpose in life is to encourage others and help them achieve their dreams, even though I’ll never achieve my own.

I’m the side character who helps the main character get off their butt. I’m Melissa McCarthy wrestling and slapping Kristen Wiig until Kristen gets off the pity party couch. I realize I am also Kristen Wiig in this situation. I am literally on the couch feeling sad about myself right now. I don’t know what to do.

I want there to be more representation of people like me in TV and film. Two weeks ago I started working on a screenplay about my life, my disability, and my family dynamic around my disability. It’s something I’ve been wanting to write for a long time. So, I was excited to finally start it, but I can’t figure out the story. If I center it around me, it is just… so… BORING. The more interesting character, it seems, is my mom. Then I de-center myself in my own story. Am I just that boring?! Is the only “interesting” thing about me my disability?

As I write this, my chest feels heavy with frustration and anger at myself. At how much self-hate I have. There’s this heaviness in my chest, and yet, I feel incredibly empty. I’m not sure what to do about it, so I’m writing. I hate everything that’s on the page, but if I erase it, I’ll feel worse. I don’t have the energy to edit and polish, so this is it. Today I have no answers, only pain. Some days that’s all there is.

A Toddler, a Banana, and a Recovering Shame Addict

It’s a summer day in 2016 and I’m at an indoor pool with some friends. A couple months before today, I had publicly shared – first at church and then on Facebook – a part of myself I had been hiding for 27 years: my disability. In 2020 I like to call it a limb difference, but in 2016 I call it a disability. I was born with a left hand amputation.

At the pool I try not to hide my hand like I used to. But it’s still a struggle. My body remembers all the years of hiding and it’s itching to cover my hand. It’s especially reflexive around toddlers. Babies are ok because they don’t even know what their own fingers are; toddlers are a different story.

My friends Daniel and Selyun are here with their three-year-old Lily. Lily is a quiet toddler. Always cautious and thoughtful. Lily is so proper and ladylike for such a tiny human, it makes me giggle. At church services she sits with better posture than all the adults – back straight and hands folded in her lap. I watch her and wonder if she comes from a royal bloodline.

My favorite moments are when she acts like a dismissive queen. For instance when she eats a donut, decides she doesn’t want it anymore, hands the leftovers to the nearest adult – whether she knows them or not – and walks away with a look of disdain. My friend Jane and I like to narrate the scenario: Here, peasant. Enjoy my garbage.

Lily is also highly aware of her surroundings and people. I love this about her, but as a recovering disability-hider, it makes me anxious.

Today Lily is as quiet and careful as ever. She’s scared to go in the pool but she’s enjoying sitting at the edge and kicking her feet in the water. After about an hour, Lily becomes comfortable going a little farther in the water: ankles, knees, waist, neck. The pink frills at the collar of Lily’s baby blue swimsuit dancing in the sparkly water, bringing out the pink hue in Lily’s adorable droopy cheeks. 

We’ve established a good routine after four or five banana bites. I start peeling the banana when I see Lily getting out of the pool. I watch carefully in anticipation because, with my left limb difference, it takes me a little longer to peel the banana.

I see Lily is on her way for the sixth bite. I’m trying to peel the banana, but I’m struggling. By the time Lily is in front of me, I’m still fiddling with the banana with my little hand. I start to tense up because I don’t know if Lily has ever noticed my hand before. I try to play it cool, kind of laugh, and finally get enough banana out of the peel to feed Lily. But she’s distracted for a moment because she’s noticed it. She takes a bite of the banana, shifts her body, and tilts her head a little to get a better look at my hand as I try to hide it behind me. She has a blank stare. She points with her index finger and makes a questioning noise, “Uh?”

I don’t know what to do. Do I address it or keep hiding it? Should I give her a better look? I decide to put it out in front of her so she can see it better. She stares – again a blank stare. No judgment, just curiosity. Point. “Uh?” She looks at her mom.

Now my body tenses up even more. It starts to tingle with anxiety and I can feel the sweat in my armpits, leg pits, and my upper lip. I’m so sorry, Selyun, now you’re being pulled into my awkward situation. You probably feel uncomfortable and don’t know what to say and don’t want me to feel weird and I don’t want you to feel weird. But it’s weird. I’m sorry. I’m sorry. Why was I born this way? I’m sorry. 

I’m about to pull my hand back behind my body when Selyun says in her native Korean, “Oh, that’s auntie’s hand. 예쁘지 (Yeh-bbeuh-gee?) Isn’t it pretty?” 

Selyun points to Lily’s left hand, “Just like you were born with that hand, Auntie Elise was born with this hand.” She points to my left hand.

예쁘지. Yeh-bbeuh-gee. I have never heard this word used to describe my hand, let alone in Korean, a language rarely used in my household to even talk about my disability. Or “problem” as my mom calls it in her limited English on the rare occasions that she does mention it.

My hand is cute, I think to myself. 

Lily doesn’t say a word. She goes back to the pool and moves on with her life.

At church, Lily and I share a few more moments over the next few years where she sees my hand and curiosity strikes her again. I put it out for her to see and let her touch it. I say to her, “Yeah! This is auntie’s hand. Isn’t it cute? It kind of looks like a baby’s hand, right?” Lily giggles and nods. I giggle with her. She goes back to playing with the other toddlers.

Lately, I’ve been thinking a lot about how I will have to address my hand with my niece. And one day, hopefully, my kid(s). It scares me. But I’m thankful for Selyun’s example.

Shame.

There is no greater agony than bearing an untold story inside you.

Maya Angelou

On Sunday, April 24th, I had the privilege to be seen and heard by my church family in an anxiety-inducing yet liberating presentation. The Creative Arts Team, or CAT, at my church takes over the last Sunday service of each month. For April’s service we focused on Deuteronomy. In a nutshell: God reminds the Israelites over and over again that He brought them out of Egypt and slavery. God commands the Israelites to love and serve the marginalized. 

“17 For the Lord your God is God of gods and Lord of lords, the great, the mighty, and the awesome God, who is not partial and takes no bribe. 18 He executes justice for the fatherless and the widow, and loves the sojourner, giving him food and clothing. 19 Love the sojourner, therefore, for you were sojourners in the land of Egypt. 20 You shall fear the Lord your God. You shall serve him and hold fast to him, and by his name you shall swear” | Deuteronomy 10:17-20 (ESV)

Four CAT members, including myself, reflected on the ‘Egypt’ that God brought us out of and how we, in response, try to ‘love the sojourner.’ For my Out of Egypt story, I read a journal entry as my sister projected photos I took of the very thing I’ve exhausted myself trying to hide for 27 years.

October 9, 2014.
3:05pm

I went to the Rehabilitation Institute of Chicago today to get consultation for a prosthetic hand. Mom and dad came with me. We had a Korean interpreter on the phone, which was kind of awkward but I’m glad we had one.

There were so many people in the room today. Dr. Huang was sitting next to me on my left at the desk, mom and dad stood next to me on the right, and across from our little semi circle stood another semi circle of doctors: two residents, two prosthesis students and Dr. Robert. All looking at me. Asking me if there was anything I particularly struggled with and that I wanted in a prosthetic. I didn’t really know what to say. I just want to be able to do everything they all can do. But I had to say specific activities. I said things like, “I want to be able to hold my notebook and write at the same time when I go reporting or carry two things at a time in general and cut steak on my own at weddings.” 

I asked Dr. Robert if my prosthetic hand depended on what objects I want to hold and he said, “Yeah knowing what you want to be able to do will help us determine if you should have a hand that goes like this,” and he made motions like a lobster claw, “Or like this,” and he made a motion with his fingers more rounded. I said, “Well I want to be able to hold my notebook.. but I also want to be able to ride a bike.” And then I cried in front of these strangers. They said I can attach things to my bike handle to help me and get other tools to help with other activities, but a prosthetic hand won’t give me the ability to do everything a flesh and bone hand can do. 

Why do I have to pay thousands of dollars to have a normal life?

I kind of feel like everyone thinks it’s a luxury to have two hands and I don’t really need it so why don’t I get lobster claws for a hand and be able to hold up a piece of paper and let that be good enough?

The doctors asked my parents if they noticed anything else I struggled with. I didn’t expect them to say much. I thought they’d say, “Elise is pretty good at doing most things on her own.” But then my dad leaned in towards the phone so the interpreter could hear. He said, “I think she does struggle with practical things. But I think she struggles the most with feeling insecure around people and she doesn’t like to go out and meet new people.” And I started to tear up AGAIN. I didn’t know they knew that about me. I thought my parents didn’t really think about it at all or they expected me to be fine with it. They never talked to me or asked me about it when I was growing up.

My parents wanted me to get the most realistic looking prosthesis even if it wasn’t very functional so that I could be in public and not feel like I have to hide. I just want to be whole.

My last visit to RIC was about year and a half ago now. About eight months after RIC applied for my prosthesis, I received a call from my health insurance provider. The representative told me they had to deny my request to cover the prosthesis because it wasn’t a health issue but a cosmetic one. “That’s fine,” I told her. “I don’t want one anymore.” Which is true – for the most part. (I still want a bebionic so I can pretend I’m a cyborg.)

A month before I made my RIC appointment, I started seeing a therapist. I had no idea how to process my experiences as a Korean American born with a disability. I had never talked about it out loud before. Once I started opening up about it, I quickly realized that my pain wasn’t about the physical activities I couldn’t do. My pain was in the loneliness of it. The silence around it. The shame eating away at me.

I looked for a support group specific to Asian Americans with physical disabilities like mine but couldn’t find any. So I created my own support system. I’ve shared about my hand with more people in the past year than in all the years before combined. I’ve connected and become friends with others who have amputations but don’t hide them like I do. They don’t have shame about it. I’m beginning to let go of my shame, too. 

I believe if I valued my voice as a disabled Korean American Christian woman, I could normalize my disability and take the shame out of it. Sharing my story might help other Asian Americans with disabilities who might be silently hurting as I write this. At the very least, it’d be empowering to share, cry, complain and even laugh about our experiences.

I was always afraid of talking about my hand because I didn’t want to be defined by it. But I can’t shake the feeling that God is telling me to get over it because there’s so much more He can do with my story. Maybe it’s all in my head- but if there’s a chance that it isn’t, I don’t wanna miss out on seeing what He can do.

Anyway, here’s ‘Wonderwall.