2006 - Vol. 3, Issue 3

Cinders in a jar
       Photo in my wallet

A Name
        w/capital N
                Part of a project
                         Name on The Quilt

Swimming is my drug of choice. On land, I am a cumbersome ungainly body, one leg shorter than the other, with a pronounced limp, knees that creak and shudder at the sight of stairs, a back that sends shooting pains down one leg, a hip with minimal mobility. In water I am a mermaid — sleek, elegant and purposeful. Or a dolphin, playful and splashy. Observers tell me that my strokes — all three of them — back, crawl, and breast — are beautiful to behold: graceful, evenly spaced, and seemingly effortless. No wonder I yearn to be in the swimming pool every day where I feel so masterful, complete and joyous; where the even breathing of my lungs is a pleasant roar in my ears and the splashes of my limbs a symphony of sound. How I move is a thank you to my parents who threw me into my very first swimming pool at age four, somehow realizing that with my ailing hip I would be a native floater. Closing their eyes to the full extent of my disability, they preferred to think of me as a fish.

All my life I have sought out swimming pools when away from home. Several years ago, in Los Angeles, I spent $75 for a hour's swim at a spa, plus $40 for a taxi to get me there. In Beijing I gave up a special duck dinner in order to squeeze in a swim on a very tight schedule. I have passed up lunches on group tours to rush to unheated pools where, after the initial shock, I succumbed to the buttery waters. In Paris, I braved a pool full of bare–chested women, feeling awkward in my one–piece suit. In Oxford, England, I tried to dodge a group of rowdy children practicing dives with their whistle–blowing instructor.

Mary and Mary. My mother and me. I have no idea what our relationship would have been like without disability. No one does.

I was my parents' first child and daughter. Although much prayed for by my mother, I was not "perfect." I was born with albinism and legal blindness, which caused my mother fear, confusion, and shame. She denied the scientific reality that she, along with my father, had contributed the recessive genes necessary to produce a child with albinism. I always felt she wanted me and my albinism to disappear.

Opening the door to her
is letting in the blink
of a thousand laser lights.
She bursts.
Sucks air out of the room.
Those transient
flickers on closed eyelids,
they are her.

The rheumatologist at Albert Einstein
Medical Center, a leading expert in the field
my parents have decided to consult,
discusses plasmapheresis. At ten, I can
barely say the word. My tongue delves
into the syllables. The sounds
tangle and twist, swirl around my mouth,
a vine clinging to a pole. The doctor
explains how a machine
will siphon blood from my veins
and filter it to withdraw the bad cells,
the ones causing inflammation and pain. 
The ruby red blood, now healthy
and fresh, will then flow
into my other arm.