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.
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.