I’ve started thinking of myself as a shape-shifter. 

I’m at a coffee shop now with my right sleeve rolled above my elbow, my charmingly irregular arm ending not far below. Later today, before I step on the yoga mat, I’ll slip on my workout prosthesis and take a new form: one hand, one hoof. Tonight, I’ll morph into a cyborg who can hold two drinks at once. I’ll remain robotic tomorrow at work, my battery-powered arm holding a tablet while my human hand operates it. In the evening I’ll shift back to exposed skin – my short, bare arm soaking up the last rays of sun. 

I wasn’t always this way. Shape-shifting marks a new evolution of my relationship with my limb difference. It might be counterintuitive, but it isn’t an attempt to change who I am in order to fit in (I’ve been there before). To me, shape-shifting means embodying different, authentic versions of myself with fluidity and ease. 

Sometimes it means allowing my arm to be the target of attention. Just a few years ago, the very thought of drawing attention to my arm would have set off sirens in my head. 

To elaborate: from the ages of fourteen to twenty-seven I wore what’s called a passive prosthesis. It was a rigid, life-sized doll arm that only vaguely matched my skin tone, picked out of a lineup of hands from a magazine in my prosthetist’s office. I wore it every day hoping I could appear symmetrical, just long enough to make an impression separate from…what? My birth defect? My limb deficiency? I didn’t know what to call it, and I didn’t like the available options. (“Limb difference” wasn’t in my lexicon yet.)

For thirteen years I wore that fake arm to class, to work, to swim in the ocean. It seemed to do its job: the world was kinder to me than before I had it. I got fewer stares, fewer comments, fewer unwanted touches. When I met someone new, I might bring up the fake arm early to get it over with, or I might let events play out, delaying the dreaded moment that I became the girl with one hand. Hoping that once they knew, they would slowly forget. Making them forget was my ultimate goal.  

Instead, I quietly worried that I’d always be too weird, too fundamentally different, to truly fit in anywhere. As I got older, I found I could connect with friends, boyfriends, coworkers about anything – music, current events, books we loved, company policies we hated, the existential angst of feeling lost in our twenties – any topic at all, except for the one that filled my brain and sapped my energy. I blocked off my arm as a topic for conversation, artfully changing the subject if it got anywhere close.

Hiding my limb difference had become a way of life. But of course, wearing a plastic-and-silicone appendage all day, sometimes all night, was stifling. 

Just about three years ago, I reached a breaking point. I had tried so hard for so long to obscure this essential part of my identity, and suddenly, I couldn’t do it anymore. Leading up to that point I had begun opening up about these feelings to a couple of close friends and my then-boyfriend (now-husband). They gave me everything I needed, and I’ll always be grateful for it.

Over the next few months, I stumbled upon a series of revelations: 

1. I wasn’t alone. Far from it. There’s a vibrant online community of people who look just like me or have their own unique limb differences. All I had to do was follow the right social media accounts to start learning from them. 
2. Differences should be celebrated. I began volunteering at Camp No Limits, a weekend camp for kids with limb loss and limb differences, and the kids showed me how it’s done. 
3. It was time to get uncomfortable. I took off my life-sized doll arm for good, and reintroduced myself to my circle as someone with a limb difference. They didn’t love me any less; in fact, I was able to show up authentically for the first time, which deepened friendships and started new ones.
4. Some really cool prosthetic options had popped up in recent years.

Nine months and several insurance hurdles later, in the summer of 2021, I had my new Hero Arm and a blossoming new attitude towards my limb difference. 

That first summer with the Hero Arm was surreal. My husband was in a band that played shows and music festivals around the Pacific Northwest – it was that happy, sun-soaked break between COVID variants, and we were trying to experience as much as we could as fast as we could. At these shows, music and friendliness filled the air. Everyone was relaxed, open, and looking for a new face to talk to. I was often on my own while the band was playing or moving gear, and suddenly I was that new face for a lot of people. 

Here’s how it would go: Your arm is so cool! I’d smile and thank the curious stranger, flex my new fingers to show them off. They would marvel at how far technology has come. I’d explain how it works, to their satisfying astonishment. I’d get on my tiny soapbox for a second: I was actually born without it – yeah, it happens sometimes. I can do most things without the prosthesis, but it helps with a bunch of little things. Like, I can hold my drink and shake your hand at the same time. We’d shake. We’d introduce ourselves. The stranger would share the fact that they once knew someone who had lost an arm or a leg or a finger, or inexplicably, tell me about the time they fractured their own wrist. I would nod seriously. We had skipped the small talk and were in deep conversation.

These exchanges could get bizarre, but usually I enjoyed them – it just felt good to share a part of myself I’d always kept hidden. My lifelong source of anxiety had become, overnight, a lightning rod for human connection. I was proud of myself for having dozens of casual conversations about disability and limb difference and the inequities of the American healthcare system with total strangers who had little exposure to these topics, and hoped that just maybe, I was nudging a few unconscious biases in the right direction. 

Compare that to encounters with strangers before I had my Hero Arm. The most common reaction was, Oh, I’m so sorry – as if my very existence was a bummer. I’d feel bad for making them feel bad. I’d change the subject. 

And that’s a good thing – because as summer turned into fall, I realized there was a new challenge to contend with: a select group of grown adults who approached me when I wore my Hero Arm as though I wore a shirt that said SAY WHATEVER; NOTHING OFF LIMITS.

Do you shower with it on?

Could you strangle someone with that?

It’s actually kind of hot.

God bless you. You’re an inspiration.

And the perennial favorite: What happened to you?

I’ve learned to quickly weigh the comment, size up the commenter. There are two ways to answer:

1. Assume good intentions. Be patient and amenable. Take the time to educate: No, I was actually just born with one hand; Sure, I’ll show you how it works. Smile at tech fanboys who shout IS THAT A ROBOTIC ARM? from twenty feet away. 
2. Refuse to suffer fools. One way or another, tell them to get lost. Never worry too much about making someone uncomfortable – certainly not strangers who comment on a feature of your body before they know your name.

The more practice I get, the more refined that second approach becomes. 

It’s not always easy to shape-shift. Each of my arms, real and robotic, has the potential to garner a different kind of reaction, and the contrast can be jarring. There’s total disbelief, as if mine is the first disability they’ve ever seen. Compliments on my “good attitude”, apparently because I’m existing in a self-sufficient manner outside of my house. Then, reserved for my Hero Arm only: unbridled enthusiasm.

Even though they come from a kind place, the over-the-top-happy reactions to my cyborg form can sometimes leave me feeling uneasy. What if I seem like a futuristic, inspirational being, someone who has transcended disability, and that’s what these people are so stoked about? I worry they might walk away with the impression that I was pitiful before, and now I’ve been fixed. My mind flashes to every Oh, I’m so sorry I’ve ever heard. 

I identify as being disabled, and reject the idea that disability is pitiful. Disability is a normal, natural, joyful state of being human. The disabled body is not a problem to be fixed. My Hero Arm is a very neat tool that helps me in a lot of ways. But it doesn’t make me superhuman, it doesn’t make me able-bodied, and it doesn’t make me better than a disabled person without fancy adaptive equipment. 

All these reactions. I wish I could tune them out – and I’m working on that. Because when I’m not hung up on the small but loud subset of people who lose their minds when they see my Hero Arm, I can just revel in the gifts it’s given me. I can use it to hold my husband’s hand on a walk. I can grip my dog’s leash and check my phone at the same time. I finally have a strong handshake! To my absolute delight, I can hold a full cup of hot coffee while opening a heavy door. At my wedding, I held my bouquet with my robotic hand and my skirt with my human one. To me, these moments are when the Hero Arm is most heroic. 

For the thirteen years I spent trying to blend in, I was shutting down dialogue about what it means to have a limb difference. Now that I shape-shift, I’m constantly pushed to represent it, think critically about it, interrogate it. To open up dialogues with my dearest friends, loved ones, strangers, and crucially, with myself. I’m trying to stay curious and continue to ask, What’s my relationship to my detachable limb? Am I wearing it for me, or to make other people comfortable with me? 

I believe these realities can coexist. These days, as I brush my teeth in the morning, I think ahead to the tasks I’ll be doing during the day and whether the Hero Arm will come in handy (pun intended). Sometimes I’ll wear it for no functional reason at all – just because it’s beautiful.    

But if I’m going to be typing a lot, or spending time in the water, or would rather be cozy, or just want to show the world that bodies like mine exist unapologetically, I won’t wear it. Come to think of it, the outright confidence to leave it at home is one of the greatest gifts the Hero Arm has given me. 

Because that’s the paradox of it all: the better I get at shape-shifting, the closer I get to becoming who I really am.