Genealogy

This is an excerpt taken from a longer piece I wrote about my interest in researching the CHH thread back through my Mennonite family tree. 

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I roll out the 3 x 4 foot scroll that is my family tree on the hardwood floor of my apartment, old paperback copies of the British mysteries that are my guilty pleasure hold down the curled-up corners. The details of the tree read like a novel, the plot unfolding across continents, its branches recounting a five-century’s old tale of faith, tragedy, and love with more plot twists and turns than a writer could imagine. Outlined against the yellow wood of the floors, the overlapping branches remind me of the bittersweet my mother picks, decorating the house with its bursts of color, the spindly branches twisting in on themselves so that it’s nearly impossible to disentangle the bright orange pods to determine where each branch begins and ends.

Following my diagnosis, my mother began her genealogical research, tracing our Mennonite and Amish ancestors back through the generations to the Anabaptist movement in sixteenth-century Switzerland. And from there, even further back to what seems an impossible thirteenth century. It’s not unusual to see one ancestor noted several times throughout my family tree, like the widow Barbara Yoder and her second husband, Hans Yoder, who appear five times across the fanning branches, their boxes outlined in a cheerful bubblegum pink. Set against the myriad of colors, the chart looks like a dysfunctional Christmas tree with its sporadic shades of purple, blue, yellow, and green highlighting the boxes of my ancestors who appear more than once throughout the generations, the coloring representing the century’s-old tradition of marrying within the faith.

Thanks to my mother’s research, many of the entries not only have the person’s full name, but also where they came from, the dates of when they were born, married and died, and in some instances, a brief description allows a slim snapshot into their lives. For instance, ten generations back, I see that Jacob Beiler from Switzerland sailed to the New World via the Ship Charming Polly on October 8, 1737. And that “Indian” John Miller, son of Christian Miller and married to Magdalena, immigrated to America on September 15, 1749 on the Ship Phoenix, only to be wounded by Indians when an Amish family living nearby was taken captive. Scanning further down the line to the seventh generation, I see that Johannes Helmuth and Johanetti Elizabeth Himmelmann were divorced after having three children together; certainly no small feat for an Amish couple.

Gazing at the family tree, seeing the stories come to life behind the scripted blocks of letters, reminds me of my first lesson in art history. I was sitting on the scarred wood floor of the National Gallery in London as our professor presented The Arnolfini Portrait by Jan van Eyck. With a storyteller’s ability to draw in her audience, she clued us twenty-something’s into the immaculate detail of the portrait; the symbolism behind the oranges sitting on the windowsill, the witty and ornate Latin signature of the artist painted on the chamber wall, and the mirror inset with ten religious medallions depicting the life of Christ. It was the first time history came alive for me. I’d never been able to memorize dates of events or remember who fired the first shot in any of my history courses and yet, ten years later, I can still conjure up the details of paintings I studied and the slice of history they represent.

For someone who’d spent her life wrapped in the cotton wool of a small, Mennonite community, London was an oasis of possibilities. There was something extraordinarily liberating in living amongst a city of people who couldn’t care less about what you were or were not doing. And to an American born on the wrong continent, Europe was a kaleidoscope of history, beauty and liberalism, with its ancient architecture and secular beliefs. Leaving our crumbling university housing on Gower Street, I welcomed each morning by picking up a coffee at the corner café before making my southward descent, skirting around the corners and through the side streets of Soho, Convent Garden, and Trafalgar Square until I crossed Waterloo Bridge and reached the Strand. I walked with my headphones on at harmful levels to drown out the puttering scooters and buses. Walking amongst a city of millions, for the first time in my life, I felt anonymous and so utterly ordinary. It was marvelous.

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Everyone’s family has a story to tell. Our parents, grandparents, great-great grandparents and on down the line lived through wars, depressions, and genocides. Families moved continents, people fell in love, had affairs, gave birth to children and buried children. Their stories are fascinating. But for many my age, listing off our great-grandparent’s names, much less where they were born, what they did for a living, or even what they were like, would be like asking us to remember a time before the internet. And it’s amazing to me that most of us don’t dig deeper into our family histories because they’re far more dramatic than any episode of Downton Abbey could ever be.

Like the paintings that tell tales of times and places from long ago, this is how I see my family tree; it’s branches a beholder of stories, a window into the past, and for me, the key to my dwarfism.

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.

In Gratitude – European Coffee

Red eye and now a three-hour layover in Munich. But European coffee makes it all okay.
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365 Days

Two weeks ago, I had Moh’s surgery on my back to remove the squamous cell carcinoma that’s been lurking around like a bad cold. I knew it was there and even tried to have it removed last year, but the scraping procedure the dermatologist recommended didn’t come close to getting it all. She’s also the one who said it was just a keratosis or a patch of dry skin: nothing to worry about. Which is what dermatologists always tell me, even though I have CHH and cancer thinks we’re BFFs.

I tend to let them sit because that’s what I do with skin cancers; we have a laissez-faire relationship. I know what they look like, I know that they go away, come back, bleed, become dry and scaly, and then disappear again. They’re like Casper, my friendly little ghosts. If I’ve got too much work going on, travel to look forward to, shoes I’d rather put money toward than medical bills, or if I’ve reached a point where I just can’t deal with it anymore, I ignore them. After having thirty-some skin cancers removed, I know what to watch for, and I know when I can’t wait any longer. I should have become a dermatologist.

However this one got the better of me. Not only had it moved up a stage, but once removed, left behind a three by three inch crater on my upper back. The part of my back I’d show off in a strapless dress if I ever wore such things. But on the bright side–because if you give things long enough, there is always one–the scar is beautiful; long, thin, and kind of mysterious looking in a What in the world happened to you? sort of way.

October is one of my favorite months, and I’m not even a fan of pumpkin spice. But with the cooler weather, lower humidity, and an excuse to start wearing plaid scarves, I love this time of year. Which makes it the perfect time to institute something I’ve been contemplating for a long time.

I’ve dealt with cancer since I was eighteen. I know my friends get tired of hearing about it and that it’s incredibly hard on my family. It’s hard to have surgery on a Friday and return to work on a Monday, answering moody author emails and smiling for colleagues like everything is normal when you can’t sit, move your arms or turn your head because some cancerous part of you was just removed.

I promised myself that once I reached the coveted five-year remission mark for my lymphoma, I’d take a break. And so, despite the protestations of my mother, oncologist, and everyone else, I’m instituting a cancer-free year starting this month. And as it won’t stay away of its on violation, the only way I know to have a truly free year—no surgeries, no swollen stitches, no sleepless nights, no waiting for scan results—is to simply pretend my body is cancer-free for one whole year.

And so for 365 glorious days, it won’t be a part of my life. I’m simply not giving it the option. I can’t wait.

In Gratitude

At least once a week I’ll post photos of things that make me happy, things I’m grateful for.

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Five year remission anniversary flowers from my parents.

Five-year remission anniversary flowers from my parents.

 

The 101 sleeping positions of my cat, Alistair.

The 101 sleeping positions of my cat, Alistair.

And another one.

And another one.

 

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Homemade pasta.

White pumpkins because they last forever.

White pumpkins because they last forever.

The wheat outside my kitchen window that glows every sunset.

The wheat outside my kitchen window that glows every sunset.

Alistair making much better use of this contraption I was supposed to use after surgery. Good cat.

Alistair making much better use of this contraption I was supposed to use after surgery. Good cat.

Colorado sunsets.

Colorado sunsets.