The Lemon Girdle

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.