Misconceptions

As a woman with dwarfism, my height is what people notice first about me. And they’re usually not all that quiet about it. Some women might say it’s their eyes, shapely legs, their bright smile or shiny hair—but for me, I could sing the national anthem whilst bending over buck naked in Walmart and the first thing you’d notice about me is my height.

And having lived in this body for thirty-some years, there are a few things I know to be true.

One is that people are innately curious about the practical stuff—how I drive, where I find my clothes, and if I’m able to have children. People make a lot of assumptions—like that I still live at home with my parents; that physically, I’m fragile and weak and not able to carry much more than a gallon of milk; and that I am that short girl you saw on the latest reality show, because as everyone knows, we’re all one and the same. The other thing I’ve realized is that when people first lay eyes on me, they tend to lose any social discretion, i.e. decency, they might have had left.

Once while holding up a pair of black panties in Target, trying to decide if I was still an extra small or if winter food and wine had moved me up a size, a woman marched up to me and asked point blank, What happened to you? as if I’d shrunk before her eyes and she deserved an explanation.

And after driving back from an oncology appointment at UVA’s Emily Couric Cancer Center, I stopped into my local Starbucks, counting on the psychological effects of sugar and caffeine to set my nerves straight, only to have the man standing behind me lean down and whisper, his breath warm on my ear, Do you think you could handle me? I can only assume he wasn’t referring to his stunning personality.

Another thing I’ve learned is that dwarfism is synonymous with misconceptions.

Here are two.

Misconception number one: Something’s wrong with me. There’s nothing wrong with me. I don’t “suffer” from dwarfism (a term the media overuses to portray anyone with a disability) and I’m not a medical anomaly to be fixed. I’ve no desire to undergo the barbaric limb lengthening surgery that might gain me a few inches but also guarantees a lifetime of pain and waddling like a duck.

Rather, what I “suffer” from is people’s perceptions of me.

The fact that I live in a world created for people two feet taller than my nearly four foot frame is no big deal—that chairs, desks, kitchens, public restrooms, counters of any kinds, bra straps, ATM machines, vehicles, pants, shoes, airplane seats, blood pressure cuffs, and those blasted bag and coat hangers they put at the top of disabled bathroom doors do not work for me is the least of my worries. Because when you have dwarfism, you learn to live in a world designed for someone else. So even if the sinks in public restrooms remain lofty aspirations, credit card readers are never placed at a decent height, and Louboutin never makes heels in my size, it won’t be the end of the world.

While society as a whole might label dwarfism as a defective gene; abnormal, malformed or diseased—a disorder in need of being cured or fixed or altogether obliterated from future generations by way of gene therapy or prenatal screening—the majority of people with dwarfism wouldn’t touch these descriptions with a barge pole.

Which leads me to misconception number two: I’m special. As many a disabled person will tell you, there’s nothing much worse than being put on some sort of downgraded, pitying pedestal. We’re not an inspiration, a miracle, your hero, or any other wonderment of the universe. We are not what everyone now refers to as your ‘inspirational porn.’ And for the love of all that is decent in the world, we couldn’t be further from the triumph-over-tragedy stories that grip a lot of people’s hearts and is the bedrock of Lifetime TV.

The fact that society finds anything a disabled person does inspiring, such as earning a Ph.D., traveling the world, or making babies, serves only to further set us apart from everyone else. That I get myself out of bed every morning, run on the treadmill, and go to work—despite my height—inspires people to run marathons, climb mountains, and live their life to the fullest is truly confounding to me.

Don’t get me wrong. Inspiration isn’t necessarily a bad thing. But in my personal lexicon, inspirational equates to different, special, and set apart. So when the stranger in the parking lot stops me, touches my arm and says, You’re such an inspiration, I can’t help but cringe. And the older I get, the less I care to hide it. Because the one thing I’ve longed for my entire life, the one thing I wanted as a child on the playground and the one thing I want as a thirty-something adult, is to be treated like anyone else–to be given the same opportunities as the kid, the student, and the professional woman standing next to me–not different, not special, and not your personal hero. Trust me, I’d trade in your admiration for a chance to wear a pair of black Louboutin heels any day.

September 23

September 23, 2016. I’ve been holding my breath for the past five years.

It feels like fifty.

When the mass in my small intestines (aka the Little Bastard) was diagnosed as stage II non-Hodgkin’s lymphoma in May of 2011, I’d been expecting it. Call it a feeling, intuition or as my ex would say—a glass half-empty outlook—I knew the big kahuna would hit someday. I just wasn’t sure when.

However, what I didn’t expect was just how much it would affect me.

After all, I was thirty-three when diagnosed with lymphoma and it wasn’t my first type of cancer or dysplasia—it was my fourth. In fact, except for a few blissful years in childhood, I can’t remember a time when cancer hasn’t been a part of my life—the weight of it sitting squarely on my shoulders, a little demon forever fluttering its wings against my sanity.

It all began when I was eighteen and the bright pink splotch above my lip wasn’t the annoying teenage pimple I though it to be, but rather basal cell carcinoma. Since then, I’ve had some thirty basal and squamous cell spots removed, the scars creating a jagged story line of surgeries across my body. But if cancer is going to be a part of your life, these minor boys are the ones you want. They’re like the Ford Fiesta of oncology. They hardly ever go fast, they don’t make a big show of themselves, and financially, they’re the cheapest to fix. Although I have to admit that in my twenties, when I was having a minimum of two surgeries per year on my face; it bothered me. Because as a woman with dwarfism, my face was the one thing I thought I had. When your legs are virtually nonexistent—and what is there has as much sex appeal as sausages—your breasts are two sunny sides up, and your hair is the color of marmalade, vain or not, my face was my prized possession. But with each subsequent surgery, the stitches pulled it just a little more out of whack, and I was beginning to look like a case of plastic surgery gone terribly wrong.

Since then, time, gravity, and a healthy dose of nonchalance have worked things out. Besides, all of the tugging and pulling will hopefully have its benefits. Because if there is such a thing as karma, I should be wrinkle free by the time I hit sixty.

The other ones—the less-than-glamorous gynecological dysplasia’s—while not full-blown cancer, are far more stressful. Because unlike the skin cancer, there’s no outside indication to alert me to the fact that my mutating cells are having a heyday. They’re what I call the silent cancers; the ones no one wants to talk about with their insinuations of sex and will never become a marketing phenomenon with their ribbons plastered across every bag of chips, tube of lipstick or package of cream cheese. They’re the ones you suffer alone.

So needless to say, by the time the fourth came along, it wasn’t the bombshell you’d expect. I wouldn’t know, but maybe it’s a little like getting pregnant with your fourth child—a bit of a surprise, but nothing out of the ordinary.

While I’d had the breath punched out of me with the diagnosis of the third, I absorbed the fourth like a bite of bitter cucumber: unpleasant but palatable. I went through the motions: spending twenty-two days in the hospital, throwing up forest-green bile, pulling my hair out in clumps, and numbly walking through a fatigue that left me wondering if I’d already died and someone forgot to tell me.

I seriously could not comprehend how things could get any worse, short of becoming terminal. And even that was beginning to sound like a vacation, of sorts. A month before I was diagnosed, the international relationship I’d been in since my mid-twenties disintegrated, and with little communication from my ex following my diagnosis, my heart was hanging inside me like that last little string of flesh that clings to a baby tooth. The pathology, oncology, and hospital bills were flying into my mailbox faster than I could slam the metal door shut and utter, shit. And the nausea, cotton-mouth, and fatigue were getting worse with each round of chemo, not better like they’d promised. Even the scarves I tied around my shiny, bald, head in the mornings were beginning to piss me off. Losing my hair, eyelashes, and eyebrows wasn’t a big deal. When you’ve dealt with straggly, thin, CHH hair all your life, going bald is a God-given blessing. But trying to tie the scarves into something stylish while undergoing a hot flash had become more than I could handle.

Going into chemo, I hadn’t the slightest clue what I was getting myself into. You might assume that the worst would be the nausea, throwing up, cotton-mouth, mouth sores, chemo brain, fatigue (it ranks right up there), red pee, headaches, loss of taste buds … the list is too long to even list. But that’s marshmallow fluff compared to what comes after treatment. Because while everyone around me was dealing with the mental trauma of the diagnosis, praying, and contemplating a life without me in it, I was just trying to make it from morning to night. I thought about how crap I felt but I never thought about dying. I didn’t think about wills or who would take my hot mess of a cat, Alistair. I didn’t even pray for myself. I just knew I would live, end of story.

This all changed on September 23, 2011, when my oncologist informed me that I was in remission. Those around me were ecstatic and couldn’t understand why I wasn’t doing cartwheels in my sleep. But when you’re no longer fighting for your life, that’s when you have time to think.

Socially, I stopped going out. At thirty-three, every one one of my female friends except two were pregnant, had just had a baby, or were in the process of adopting. I’d just finished my sixth round of RCHOP, which threw me into early menopause. The only things we still had in common were our out-of-whack hormones and hair loss, just for very different reasons. I tried explaining hot flashes to them but it’s hard to describe self-combustion. I didn’t know how to handle their happiness—they had the one thing I wanted, and they didn’t know what to say to me.

I stopped going to church as I couldn’t stem the tears from streaming down my face during children’s story time. Coffee and time alone at home became my Sunday morning ritual.

Wrinkles and battle lines appeared as if out of nowhere. And the fatigue, oh my Lord, the fatigue. I fought it for the first two years of remission until I read an article by a twenty-something survivor who wrote of her exhaustion, “Other people in my age group are like, ‘I went to a party yesterday, it was crazy!’ And I’m just like, “I got out of bed yesterday, it was crazy!”

I wish I could say at this five-year remission mark that I’m grateful for each day and that the whole thing has been a blessing in disguise. Some of this is true. Some of it is not. What I can say with a hundred percent conviction is that nothing is as it was and I wouldn’t have it any other way.

I learned who will show up and who will stealthily disappear when life starts throwing its curve balls and flaming arrows. It’s not always who you think it will be.

While drinking coffee and reading the news online one morning I read an article about First Descents, an organization that takes young adult cancer survivors rock climbing, kayaking, and surfing. Within a month of reading the article, I was hanging off a rock in Estes Park, Colorado, with a group of survivors who went by the nicknames of Pasta, Road Rash, and Rev.  A year later, I kayaked in Mount Hood, Oregon, and the following year, I rafted down the Middle Fork of the Salmon with Bird Shit, Bumps, Too Tall, and a group of twenty and thirty-something breast cancer survivors who lit up their fake boobs for entertainment after dark. A former citified bookworm, I realized that actually, nature was my thing. Five years after treatment, I can barely stand to be inside anymore.

Which led me to gardening. Despite the best efforts of my Mennonite mother who canned and froze everything except gum, I spent my adult life actively avoiding dirt. But after treatment, I started to plant things as it gave me a reason to be outside. Tending to seedlings, watching them push their way to the sky, and harvesting my own tomatoes, cucumbers, herbs, and peppers has been one of the most healing things I’ve ever done.

But my greatest takeaways from all of this are twofold: facing my worst fears and learning to love the body I’ve always been a little bit ashamed of and at times, outright hated.

Amongst the myriad characteristics for cartilage-hair hypoplasia is an impaired immune system and the penchant for various carcinomas, including skin cancers, leukemia, and non-Hodgkin’s lymphoma. This means that the little demon forever fluttering its wings against my sanity is just gonna keep on fluttering. With my cancer history and significantly impaired immune system, chemo was my greatest fear, something I tried not to think about—like tarantulas or a global coffee bean shortage; the stuff of nightmares. I assumed chemo would see me riding off into the sunset. However, my body fought like something out of Robocop. And that’s when I started falling a little bit in love with it.

As my friends grow older and begin to lament the reality of their aging bodies, I’m just beginning to celebrate mine. Because for all of the hell it’s put me through, and for all its scars and seeming imperfections society will never let me forget; personally, I stand in awe of its sheer will to live.