lucy’s story: what you didn’t yet read

by bam

there is more. there is always, always more.

sometimes, when i am writing a story for the newspaper, it actually hurts to leave out whole chunks of what i’ve gathered. a hundred thousand times i’ve cut and cried, leaning mightily on the words of one mr. hemingway: “a story’s only as good as what you leave on the cutting room floor.” it’s a line we whisper to ourselves as we wave goodbye to bits and threads we love, but cannot use. only so much you can squeeze onto those blank white pages, before they wrap the next day’s fish. or, in the case of my mother, line her birdcage.

lucy’s story, the one i told on mother’s day, is one of those ones that would have left me aching, feeling unfinished, if not for this holy sacred place where there is always room to finish every story.

my job, as storyteller, is to propel the reader through the piece, to condense, refine, suggest, spell out, depending on the day and space.

my preference, as storyteller, is to meander. to take my time, peek in corners, poke beneath the covers. listen. really, really closely. let whole thoughts unspool, and not just cut and grab.

i understand, of course, that readers mostly want to get to the point, and then move on to tidy up the kitchen table, get the kiddies out the door, pick up the dry cleaning. be done with it.

but this place here, this table with so many chairs, is wholly discretionary. you take it, or you leave it. this is whipped cream and maraschino cherries. you don’t have to pick just one, eenie-meenie-minie-moe.

so curl up, rest your chin on your palms, and your elbows on the table’s edge.

there is more to tell you about blessed lucy, and her mama rosa, the two i introduced you to just yesterday, or if you picked up a chicago tribune, you might have met them back on mother’s day.

for you just joining us, lucy graduated saturday with a degree in bioengineering from the university of illinois at chicago. she’s been in a wheelchair since she was 9. she found out when she was four that she had a rare degenerative disease, spinal muscular atrophy, which has left her arms and legs rag-doll limp, unable even to turn the pages in a heavy book, sometimes too tired to lift a peanut-butter sandwich to her lips.

her mama, rosa, has been the arms and legs that lucy cannot use. for six years. all through college.

she has opened doors, laid out books and papers, cut up lucy’s breakfast, lunch and dinner. at night, she rolls her, side-to-side, three times before the dawn.

i condensed all of this in the story. but what i didn’t get to spell out were some of the everyday obstacles that would have felled a lesser duo.

for instance, lucy and her mama–who is not fluent in english–rode the CTA’s blue line train every day to campus, a one-hour ride if all unfolded as it should have. but, often, it did not.

sometimes, the elevator in the train station near campus wouldn’t work, so lucy and her mama would have to re-board the next incoming train, take it on downtown, where they would transfer to another line, and take that train back out to campus, to a station that didn’t require an elevator.

or, sometimes, when it rained, lucy would worry that the rain would muck up the battery that operates her wheelchair, which would loosen the cable to her joystick, and she’d be stuck–with a 420-pound wheelchair that her mother couldn’t push if she wanted to.

just last week, riding in for her very last exam, a two-hour grueler in her hardest class, lucy spilled a bit of gatorade from the bottle she was sipping during the ride. the sticky liquid got into the battery of her wheelchair, and when they got to campus, to take the exam, the wheelchair wouldn’t work. they had to turn around, go home, get the back-up chair, and start the trip again.

“good thing i hadn’t gotten around to giving away the old chair,” she said matter-of-factly. good thing, too, she added, she’d originally set out for campus four hours before the exam.

earlier in the semester, the only elevator in the building where she took her hardest class was broken for a week. she had to miss a whole week’s lectures, relying on the notes that someone else took for her, never quite totally grasping every concept in a class called Pattern Recognition, which has something to do with understanding how an automated machine–say, an MRI–analyzes data to make a diagnosis.

for a woman who takes half an hour just to write one page of painstakingly-looped letters and words and sentences, she said there was nothing she could do but watch closely as her lab partners precisely measured out chemicals–in fractions of a milliliter, sometimes–with the glass pipettes that are so essential and so taken for granted in every science lab.

same thing, she said, when it came to intricate wiring that had to be tracked and secured for circuit panels in a bio-instrumentation lab. she watched, and absorbed without the tactile learning that comes from fingering each wire, screw and micro-tool.

but what sticks with me as much as the heartache over how hard her road was, and how she not once complained, is what lucy had to say about her unshakable faith, once lost, now found. and a friend whose light still illuminates her way.

“when i was little i was real religious,” said lucy, sitting in a study room in the engineering building at UIC last week. “when i stopped walking, i became an atheist at the age of nine.

“i was depressed from nine to 15. ‘why did i have to be born with a disability?’ i kept thinking.

“but then i thought about how would the world be different if everyone was perfect? would everybody be super vain? they would never think of helping anybody else. what if? when i finally accepted my disability, it felt like a lot of bricks had been lifted off me.”

lucy, who is 24 now, says she wouldn’t change one thing in her life. “i’m not blind, i can hear, i can speak, i can use my mind. i think i finally just got tired of being depressed. i thought, ‘i’m never gonna walk, why be sad about it?’ being sad about it, isn’t going to change it.”

it was a college religion class, one on catholicism, actually, that really opened her heart, she says. the class was assigned to read one of the writings of Pope John Paul II, who suffered from parkinson’s disease. the writing, an encyclical titled, “The Gospel of Life,” she says, revolutionized her thinking about her own disabilities.

“i used to feel like a disability was a punishment. after reading the pope, i realized it’s another beautiful form of life.”

reading the pope’s words, she said, “kind of helped me bring my faith back in God.”

her mother, rosa, never lost it. even though she says her deepest desire is to see lucy stand and walk.

“you know why i think God is very good,” rosa asks. “lucy cannot walk; my other daughter can. what i can’t see in one, i see in the other.” it is the same, she says, with her two sons, one of whom is in a wheelchair (and a freshman at the university of illinois at urbana-champaign), and one of whom is not.

this, from a mother who must speak up for her daughter in the cafeteria line, because lucy’s disease won’t allow her to speak much louder than an amplified whisper. she can’t bark out a request for the baked ziti that is her very favorite lunch.

the one thing that lucy still misses, she says, is her privacy.

“before i’d hide notes all over my room. after i stopped walking, i couldn’t keep anything hidden. everybody always had to know everything.”

lucy says she learned patience from her best friend, giovanna, whom she met when she was eight, and who died when she was 13, from SMA, the same disease that lucy has.

“she taught me to have patience. i didn’t want people to help me, i wanted to do everything for myself. when i first met her i could walk. to all of a sudden be in a wheelchair…”

it was practically unbearable, lucy says. giovanna, she adds, “taught me determination.”

giovanna was full of grace, as lucy tells it. and giovanna, i think, bequeathed her grace to lucy.

and that is most of what i wanted to tell you about two fine souls who rolled into my life last week, and now will never leave.

one of them, a woman who finds justice in the divine equation that has two of her four children in wheelchairs, motoring around college campuses, refusing to rein in their dreams, now inspiring far beyond the boundaries of their colleges.

the other, a woman who sees the wisdom–and the beauty–in a world where our imperfections compel us to reach beyond our limits, to be each others’ arms and legs and hopes and dreams.

those are the lessons i learned at work this week.

it is no wonder why i call this storytelling business not just a job but a holy sacred calling. how blessed i am.

how blessed, lucy and rosa trevino, not trapped at all by a life in a 420-pound chair on wheels. but rather, teaching as they roll, inspiring as we lope behind, trying to catch their holy shining wisdom.

bless you if you stayed to read this story. it was long, i know. but it feels so deeply essential. your thoughts….

the photo above is one i took at lucy’s graduation. months ago, she ordered that certificate of gratitude for her mother, just for graduation day. because the print is small, i’ll spell it out: “thank you for all your love and support. i would not be where i am today if it wasn’t for you. i feel so grateful to have you in my life. today is my day, but i dedicate it to you.”
and then she signed it, lucy trevino. it took minutes to push the pen through those 11 proud but simple letters.
the lilac chiffon you see behind the certificate, and the sturdy hands, those belong to rosa, who was beaming all day saturday, mexican mother’s day.