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Kim Lan, RD Photographer & Author

“It is not our abilities that show what we truly are.  It is our choices.”

-Pr. Albus Dumbledore, Harry Potter and the Chamber of Secrets


Part I: Pre-Liberation: Growing Up in the Confines of My Own Able Body

I knew very early in my life that I’d someday have my leg amputated, though I don’t recall hearing that option from my doctors until years later. In the 80s, Klippel-Trenaunay-Weber Syndrome was as rare an anomaly as they come; very little was known except that KTWS sufferers typically did not also suffer from health and longevity. Marked by port-wine stains in newborns and infants, one vertical half of the body is affected by excessive tissue and bone growth and arterial-venous malformations (AVMs) in that half of the body, in the heart and other major organs, and brain. It’s extraordinarily painful, requires constant maintenance either surgically or topically of wounds and ulcers, and has no cure. I basically had super wonky vasculature that everybody thought would kill me young. I knew even as a kid, though, that that was not my fate.

In kindergarten, my wee classmates and I huddled around an Etch-a-Sketch and compared kid battle wounds like it was a contest.

“I have a paper cut under my Band-Aid,” bragged little Suzy.

“Oh, yeah? I broke my wrist last summer,” countered Jimmy.

“Well…well…I’m allergic to peanuts!” proud Becka chimed in.

“I won’t live to see 18 with both legs,” I vividly remember saying, quietly, almost under my breath but just loud enough for my cohorts to hear and without any trace of bragging. What kindergartner actually says something like that? And I don’t mean the topic. I mean the syntax. I could have said, I’ll hafta cut off my weg, in my cute sing-song, high-pitched kid voice. But, no, I chose the most bizarre, macabre, prescient statement in the universe. I still do this, by the way: present my syndrome to new people with either a startling or humorous lean, trying various emotions on for size; coping can be confusing. My prediction was wrong, though. I did live to see 18 with both legs; my left leg wasn’t amputated until four months after my 18th birthday. I was close, but am definitely no psychic.

Not long after my weird acknowledgment in my kindergarten class, my little world started swaying, then violently shaking and then didn’t stop for over a decade. The ’89 Loma Prieta earthquake scared our family inland, my mom, not even a full month after quake, swiftly packed up our things and took us to Stockton, CA, where there are no earthquakes but plenty of meth labs, grand theft auto, gang violence, and, now, repeated failed valiant efforts to rejuvenate a once promising agricultural community. I never quite found my groove in Stockton, which I think was partly to do with my syndrome, my at-the-time non-apparent disability, and my ethnic makeup. So much of that place exacerbated an already trying existence, but at the same time, so much of that place helped me survive.

I experienced a strange kind of racism there as the minority’s minority, not even having my cultural group to fall back on, to turn to in times of the harshest isolation. Stockton, a culturally rich city with huge Vietnamese, Laotian, Cambodian, Chinese, Hispanic, and African-American communities with a white majority that is evenly split between extraordinarily wealthy country clubbers and poor farmers, didn’t seem to have a place for little ol’ Hapa me. I wasn’t Vietnamese enough – didn’t speak the language or eat Vietnamese food made by my mom at lunchtime – for the Asian kids and definitely wasn’t wealthy or white enough for everybody else in my parochial schools. To this day, God forbid I ever call myself white, though I am half Polish, each culture either picking me last for team sports or shoving me in the other’s direction as if to say, “Take her; she’s not our problem.” Once, while walking to the nearby office supply store to pick up a Father’s Day gift for my dad, a beat up hatchback filled like a clown car with at least eight angry and aggressive Vietnamese teenage boys stalked me for the entire walk. Hanging out the windows, they harassed me because I didn’t speak their–our?–language and because I didn’t have a Vietnamese boyfriend when all eight of them were available and willing. The irony didn’t escape me even then, rolling at 5mph alongside me, their juggling act between bully and prince charming. Things like this happened to me often and, if I received any respite from the harassment, it was most likely because my cousin, only two months older than me and who lived in the house across the street from mine, demanded it of them, she the Queen Bee to their frenetic and volatile Southeast Asian hive. Meanwhile, the white kids either didn’t give a shit about me or were sated teasing my disability throughout my entire childhood and adolescence, each peer with his/her own style of cruelty with which I had to learn to cope and defend myself against. That alone was exhausting.

The deep, dark, swollen port wine stain that peeked out over the top of my sock and the bulkier, fatter and slightly darker left leg earned me the nickname of “Bigfoot,” among other golden nuggets of ignorance, in elementary school. The loudest and most frequent user of the pejorative phrase was the boy I had a crush on. Ain’t that just the way?

In middle school, while I sat on the sidelines of the P.E. class drills, the beautiful, popular girls I’d foolishly so wanted to be like would make faces at me and tease me from inside the game. One would affect a limp, the other would put on her best pitiful sad face, eventually collapsing into giggles before taking their turn to run their sprints. Yet, I was still active when and how I could manage. Out until dark on anything with wheels and a cheerleader, I also loved basketball and softball and swam like a fish. Each night, though, I’d collapse in pain, screaming in my pillow so my parents and brother wouldn’t hear. I’d eventually cry myself into a half-sleep, my body shutting down simply because it lacked the resources to function, to process, to cope, but my mind still contorting my limbs in spasms and throbbing aches.

So, I almost didn’t want to hit the softball because I was afraid of running the bases.

While the skaters of our town accepted me into their clique, I’ve never actually skated on a skateboard, certain that the board would hit my foot just so and betray my disability secret to my only friends.

Meanwhile, at school, dancing was my drug that would catapult me into the highest, most blissful highs, then send me crashing into a writhing, tearful mess, barely able to breathe from the incredible pain of poor vasculature and deteriorating tissue. I loved every second of our halftime show dances and the practices leading up to them, but the nights that followed them were the worst. I used to wish for death then. But by the next morning, my hopeful, gregarious and lonely self was far too eager to get to school, even with the name-calling and the teasing, than to think about my agonizing, restless night. Loneliness. That’s really what it was. That’s really all it was.

Once, in our pre-performance psych-up session, jumping up and down and screaming “pajama game!” at the top of our nerdy lungs, another theater kid unintentionally slammed down on my ulcerous foot with her platform heel, sending me spinning into a daze of pain I was too embarrassed to tell anybody about. Air caught in my throat, I felt like I was going to puke, my eyes teared, my head throbbed, my stomach twisted; I imagine my reaction was a little what guys feel like when they get kicked in the nuts. I Quasimodo-limped to the backstage bathroom while the rest of the group finished their chant. I cleaned off the bloody mess, reapplied the acidic-like medication with the gauze and tape I kept hidden in the secret compartment of my backpack, and redressed the wounds without anybody noticing. I went on to deliver a disappointing performance, my voice squeaking during my solo, choking on my tears and indignation. After the show, the single extracurricular event of mine my parents have ever attended, my dad’s only feedback, delivered with a firm Dad-pat on my back, was that I was a terrible singer.

Even though, at this point, I had all my limbs and didn’t require assistive devices to ambulate, I felt very much disabled. Even my own family relegated the port-wine stain to a simple birthmark. They ignored how long the ulcers persisted, even after years of antibiotics and weekly visits to wound care specialists and burn clinics. The correlation that the ulcers followed the path of the port wine stain was lost on them. And, no matter how much I told them, the port-wine stain–and the incredible pain–spread higher and higher up my calf. To them I just had “a bad leg.” My mom especially balked at the idea that her daughter would be crippled, which is actually what her sister/my aunt called me relatively recently.

The combination of my seemingly cold parents, the hard city of Stockton in which I lived during my most formative years, and the incessant racism, bullying, and horrific pain I’d been subject to created the perfect cesspool for me to grow to be just as cold, hard, and bullying. With these shields on, I was better able to cope with my environment. I also outgrew my tween ugly duckling stage and was hooked up with a pretty nice set of boobs and a face and body with those irresistible Hapa features: dark hair, fair skin, almond-shaped light brown eyes, freckles, those telltale high Vietnamese cheekbones, and a thin Vietnamese frame on a tall Polish body. And did I mention the boobs? I inherited my mom’s sharp tongue and bad temper and my dad’s wit and stubbornness, too. With all of that, I learned that the best defense mechanism was to be a bitch. All. The. Time. I gave sass to everybody, often disrespectfully questioned authority, repudiated any rule or limitation imposed on me, bullied other pretty girls I thought were a threat to me, drove like a rage-full douche-bag, and did everything I could to make other people feel as small as I felt. I wanted people to be so blindsided by everything else I unrelentingly threw at them – wit, attitude, big boobs, whatever – that they didn’t even have a chance to notice how weak and pained I really was. I hate the maxim “hurt people hurt people,” but that shit is hella true. The only people spared from my ferociousness were those in whom I recognized similar pain. My fellow pariah, the underdogs, the gays, the minorities, the skaters, the nerds, those who dealt with their disabilities in silence…they were my people. They already hurt like I did, so I spared them my toxicity. Still unaware of my own naïveté and hypocrisy, I bestowed upon everybody else the brunt of my resentment and hatred.

But something truly awful and completely embarrassing happened one day that would spark in me a new perspective of tolerance and love as my choir teacher, who I loathed, was the only one to show me kindness when I needed it most.

At some point, a large folding table collapsed while my teacher’s legs were tucked under it, fracturing her femur. You’d think I’d take pity on her, but I did the opposite. I resented that she crutched around pathetically, that she seemingly bragged about how she almost lost her leg when I knew my amputation was just around the corner. She talked about all the pain meds she was on while I yearned for a respite from my own pain. She’d call in sick to work, sending an apathetic sub in her place, citing leg pain years after her cast was removed while I seethed at the unfairness of not having a day to rest. Though I loved to sing and to perform, and I actually really did love her class, I was not an easy student. I’m pretty sure most of my life’s eye rolling happened in her presence. To her credit, I don’t believe I ever told her about my syndrome or impending amputation, yet I perceived her every move to be solely about me, directed pejoratively to me. Because, hey, I was a teenager.

One day, very memorably the last time I did so, I ran. I ran through the hall to get to her choir class in time. I’d had a pass, mandated by doctor’s orders, to take my dear sweet time between classes. I didn’t have to run. But I did, because I could. Finally at the choir room door, I walked in, breathless, just as the bell rang, pleased that I’d made it. I dropped my backpack off at my seat and walked across the room to my cubby to pick up my sheet music, taking the long way around friends’ chairs to say good morning. Over the cacophony of zipping backpacks, rustling papers, and chatter about our upcoming statewide choir contest, I heard a classmate ask loudly, “Who’s bleeding?” I knew immediately it was me. The ulcers on my foot had gotten so deep that they were deeper than nerves – so I couldn’t feel when they began to bleed – and so deep that the ulcers grazed blood vessels. I often would shoot blood several feet away from a tiny spot in the ulcer and not even know it until I felt the warm wetness on my other sock, soaking with its neighbor’s blood. I looked down and saw that I was standing in a quickly expanding puddle of my own blood and that my crimson footsteps could be seen coming from the door to my cubby and connecting the dots of my friends’ chairs. I must have started bleeding during my unnecessary run down the hall to the choir room. “Oh my God, Kim Lan,” I thought, “you are so fucking stupid.” I looked up at the class to see everybody looking at me, silent. I ducked into the nearest door – the instrument closet – and sat on the floor, putting pressure on and elevating my foot as I did at least twice a day. I wondered if I could climb into the tuba and disappear. Who would, could, love me now, in all my sickness? I was different, gross even, and now they all knew. I was vulnerable, helpless, no longer able to hide behind my quickly delivered expletives and ferocity. After a few moments, the door opened to the instrument closet, my safe haven. I half expected a classroom full of my peers either laughing at me or hurling from my disgusting display. Instead, I glimpsed a now completely empty classroom – the students had been filed out – and, filling the opening, my choir teacher stood, her eyes surveying me on the floor. She fell to her knees, something I knew she couldn’t do without extreme discomfort, and helped me hold pressure on my gushing foot. She looked at me, saying nothing, with warmth and love. We both cried, still not saying a thing, until the bleeding stopped.

We never actually talked about that incident, but it remains a vivid life-altering memory. I guess it was then that I first realized that kindness was far more powerful than the endless bitchiness I’d so adeptly spewed at everybody. That wild rage of mine still lurks under the surface for any racists and misogynists I may come across, but having love imposed on me like that really helped me shelve that aggression, only to be unleashed when I can use that power for good.

Soon after, as I walked down the long aisle at my high school graduation in front of thousands of people, hundreds of which were my classmates, my greatest frenemies, I silently begged, pleaded with the powers that be to allow me to make it to the stage without limping too noticeably, without collapsing in pain, and without irritating one of the ulcers on my foot so that it’d shoot a 6-foot-long stream of arterial blood at my classmates in their white graduation gowns. “Please please please…” I chanted through smiling lips and clenched teeth, “…just to the stage. You can let whatever happen after their eyes are no longer on me.” I held my breath the entire walk, as if that would ease my blood pressure and calm my wounds. In retrospect, I’d been holding my breath my entire life. But this time, I was finally open to whatever situation would greet me on the other side.

So, you can imagine, after 17 years of pain, misery, pressure, and isolation, that an amputation would be a proverbial walk in the park. I’d done the research – well, as much as could be done in a nascent-stage internet, pre-Google world – and knew that I could live a relatively pain-free life as an amputee. I’d be able to walk, run, dance, finally get a restful night’s sleep, pay better attention in school, feel less socially awkward without such an enormous medical story to either explain or hide, and I wouldn’t feel the pain of the unhealing ulcers or the deteriorating tissue of my leg because, well, it simply wouldn’t be there anymore to feel. It wasn’t a difficult decision for me at all. And for the first time in those 17 years, I loved my body and all its differences. I really did want what was best for it. I still cared deeply for people to understand and like me, to see past my disability, but I was content in understanding and liking myself. Just as I had as a kindergartner, I knew my fate well enough. I knew I would feel love and support someday, but for now, it was just going to be me doling out the love both to myself and to others. It’s no surprise to those who know me that that once dark, lonely person would go on to eventually create the Redefining Disabled Project, a community of safety, support, and disability.

But, as a 17-year-old, I was still a minor who had very little legal control of her body. While I was certain that an above-knee amputation was my ticket out of my misery, my parents felt very differently, which brings us to PART II of my story, for which you’ll have to wait. This next part of my disability journey includes an ultimatum, a lot of ugly human behavior, and, finally, an elective above-knee amputation. I hope that you’ll join me in my retelling of it, as it will definitely take courage. And a martini. Definitely a martini.

 


 

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