A few years ago, I began blogging. A quirky little blog about dating in which I rehashed the more-often-than-not horrific online dates I'd endured, berating these poor, personality-less men who, I now know, were only doing the best they could.
I realize now that I had it all wrong. I have a real story to tell. One that, I hope, will teach lessons of simple joy and gut-mustering courage.
You see, I have a lemon
girdle. That’s what the
three-year-old me called it. I
remember gazing at the lemons hanging in-wait on the tree in our square
backyard, imagining them as ladies, waiting to be plucked and bound, waiting
for their bodies to be transformed from ovals to hourglasses. Lord knows I wish that were all it
was. A cute little
cinch-in-your-waist girdle, colored yellow and puckered. In reality, it’s not-so-cute,
not-so-little and not-so-yellow.
Puckered? Certainly.
It’s Muscular Dystrophy. Limb and Girdle Muscular Dystrophy. LGMD.
Up until recently, each time I told someone I had it, the words stuck to my teeth
like the trash snagged on the bars of the street gutter, blocking the rain’s
flow.
In fifth grade, the conversations
went something like this:
Them: “Why don’t you do P.E?”
Me: “I have bad legs,” Please
don’t ask more…Please don’t ask more…
At twenty-six, the
conversations went something like this:
Them: “Why are you taking the
elevator?” Giggle and sneer. “
Feeling lazy?”
Me: “No [asshole]. I have Muthclar Dystrophy.”
Unless you see me
climbing stairs, leaning heavily onto the handrail that lines the right side of
the case, heaving my legs up one-at-a-time, I might be able to fool you. You might think I’d be able to hop on a
bike and go for a Sunday ride with you or put on my tennis skirt to go ‘hit
some balls’ or join your Tuesday night bowling team. If we spent a little more time together, though, you’d see. My pace, a bit more turtle, a little
less hare; my ability to lift, more Wimpy than Popeye; my getting off the
couch, more elephant, less gazelle.
The first time I
felt different snuck up on me like a stealthy little thief. Pre-kindergarten was a time unaffected
by difference. My earliest
memories date back to when I was two—the time I choked on a hotdog and croaked
“mom”. No sound escaped until she held me over the kitchen sink, her arms
wrapped around my stomach. With
one strong squeeze, the hot dog shuttled from my mouth, slammed against the
kitchen window and rolled down the drain.
I remember the joy of Silly Puddy removing Popeye’s image after being
pressed against the comics. The
smell of Tia Maria tinkling from my parents’ icy glasses as we sat in fraying
lawn chairs in front of our tiny, flat-roofed house. Yogurt Push-up Pops and drive-thru dairies.
That was the Age
Before Comparison. The Age before
“me” and “them” existed. Truly
young children are really good at acceptance, aren’t they? And so, when I toddled through summer
sprinklers with other three-year-olds in the neighborhood, I thought my
not-keeping-up was just my love of water—my wanting to take my time. Yes, even at three, I was aware of
these thoughts. Not as Freud would
have been—nit-picking every innocent action and interpreting every crazy dream;
maybe more like Big Bird draping his wing around my shoulders in approval of my
self-awareness or a congratulatory wave of a trunk from Snuffalufugus.
My childhood began
on a tree-lined, Spanish bungalow-dotted street in a suburb of Los
Angeles. Memories of that time
flit through my mind, little flickers of a movie reel, yellowed on the edges,
little lines squiggling through them.
They are misty. And
shrouded in happiness.
My family took
frequent trips to the Los Angeles Arboredum, my sister, only nineteen months my
senior, and I dressed like twins.
Boyish haircuts. Flowered
dresses. Mary Janes. We would walk the endless expanse of
grass, throw dried corn kernels purchased from a red candy dispenser whose
handle sighed crrrrrraaaannnnnkkk-click as it swallowed a dime and spit out the
food, and climb trees to pose for countless pictures. In these pictures, my sister and I peered down at the
camera, two little sloths with arms wrapped around the tree’s trunk. In all honesty, I don’t remember if we
climbed the trees or if my dad had hoisted us up there, bracing us with his
arms until he knew our hold was fast.
I choose to believe that we climbed because that’s an adventure I’d be
unable to explore today. My limbs
now so planted to the ground, so made heavy by gravity.
Sometimes the
whole family—aunts, uncles, cousins, grandmas—would picnic there. It was the time of polyester. The cousins and I would run around, playing tag and somersaulting over the springy grass.
All giggles and squeals and flailing arms.
Even in those
toddler days, even surrounded by my family, I wondered if they knew I was
different. If my cousins, who
could cartwheel and backward handstand their way from pond to pond, wondered
why I couldn’t. I wondered if my aunts
and uncles and grandmothers knew or if my parents had chosen to keep our
shameful secret to themselves.
As
an adult, of course, I now realize the bond of family. The way we fall into each other, our
arms ready to brace our own bodies but hoping that they, our blood, will beat
the inevitable 9.8 meters per second per second spell cast upon every falling
object by Gravity, that omnipotent magician. The way we tell each other our fears in hopes that by
voicing them, we will steal some of their power.
Some of you, dear readers, are sitting on your couches
calling me crazy. For some of you,
your family members are the last people you turn to. The baggage they’ve packed in your little life suitcase
already oozes out of your zippered edges.
No, thank you, you think.
But my family is
different.
Of course they
knew.
I remember the day
I was “diagnosed”. My sacrificial
lamb was my sister who was not reaching the physical milestones she should have.
On my diagnosis
day, I sat not inside a doctor’s office but in my Grandma Lily’s living room, the
room at the front of the house with a huge window. I vaguely remember the dusk sinking through that window, my Uncle Chris sitting
on the couch, his arms folded behind his head, legs stretched out. Adult-talk
swirled around the room in a susurrus of whispers. Anticipation hung heavy. My mom and dad and sister absent.
That’s it.
That’s all I
remember.
It wasn’t until
years later that I realized that that was the night. The night. My sister
had returned from that night with two scars. One little pink slug on her left upper arm and one little
pink slug on her right thigh. The
doctor’s at UCLA Medical Center had given them to her as a parting gift. The scars. And a diagnosis of Limb and
Girdle Muscular Dystrophy.
At thirty-eight, I can finally say it without stuttering. It comes out almost smoothly every single time. And this blog is a place for me to celebrate what it means to be disabled and beautiful and have a body that teaches me something every, single day.
