lucy’s story: what you didn’t yet read
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.
A beautiful epilogue to an amazing — and beautifully rendered — story! Thank you for sharing it with all of us.
Tuesday, May 13, 2008 – 06:05 PM
i cannot get this story out of my mind. i did not realize it was you who wrote the story when i read it and became mesmerized by it in the trib. of COURSE it was you, it could only be you, who so beautifully and tenderly wrote this beautiful story about these two amazing women. thank you for sharing this story with us, it is a gift to read about these two women.
Tuesday, May 13, 2008 – 10:45 PM
bam, this is the place where I don’t have to answer the question, “how can you be a pediatric chaplain?” It is here at this table, where us curious and wandering souls can hold up realities of life and bless the spirit that propels one to play, study, live and dream. thank you thank you for all that you have shared
Wednesday, May 14, 2008 – 09:06 AM
whenever i start to lose faith in what i believe in (the power of telling stories, same as you) it’s so beautiful to come here and be reminded that telling people’s stories IS important, it is a calling… a call to recognize and shout out that these people matter, we all matter… i love this story. love, love, love it.
Wednesday, May 14, 2008 – 08:48 PM
Wow…I cant even really read this, it’s so moving. This is just an incredible story to lift me into the day. So nice to be connected to your connection to the world this am.
Thursday, May 15, 2008 – 07:49 AM
incredible. the best portion of life’s journey is what we learn about each other and in doing so, learn about ourselves. lucy has given us the chance to do just that! lucy is a great student, one who has matured, as all do, by the process of getting a college degree. she’s now job hunting. life goes on, and lucy is a lovely example to anyone who stumbles or struggles. \
barbara, thank you for covering this story. all of us at the college appreciate how much lucy means to you now.
Thursday, May 15, 2008 – 09:01 AM
thank you for picking up the bits off the tribune’s cutting floor and giving us the rest of the beautiful story. “whole chunks”, indeed.
Thursday, May 15, 2008 – 10:22 AM
mom of 2
it seems odd to me that the truly important aspects of life often get pushed aside as we deal with the much more mundane…schedules, “business”, and to-do lists. It is a blessing to me to have a “place” like this to come and concentrate on the “real” life…it is always out there in front of us, thanks for pointing the way!
Thursday, May 15, 2008 – 12:46 PM
your story behind the story amplifies the message I read in Sunday’s Chicago Tribune story – this story about the strength and power of love and commitment – raises all of us a notch higher and closer to understanding what is most important in this life. Thank you for adding muscle and love to what I already thought to be a magnificent story.
Friday, May 16, 2008 – 12:34 PM
thanks for the ……….rest of the story, much appreciated.
Friday, May 16, 2008 – 03:07 PM
My favorite part is the Giovanna part. Can you imagine losing your best friend in the world when you are 13? What a gift was given to Lucy from her! How only by grace can such things happen! We will never understand the mysteries of life and why or how things happen as they do. But the Lucys and Rosas of our world can illumine what we do with difficult mysteries, how we go forward, how we access the terrible and hard-won good that we can only receive through mysterious and grace-filled means.
Sunday, May 18, 2008 – 11:28 PM
bless each and all of you who took the time to read this, who saw how the added-on layers of her story only made it seep more deeply into our hearts, and how hearing her voice on the subject of coping, of lifting up her struggle transformed not only her, but all of us in reading it, absorbing it, and being forever illuminated by the grace of lucy and her holy blessed mother. they are pulsing lights shining in my nightsky. i will let you know if lucy’s next dream–to get a job in a law firm, and then to go onto law school–comes true, too. we’re working on it……
Monday, May 19, 2008 – 08:04 AM
alright you…look what you’ve brought- bright to light again, and here i am sitting, typing when i should be planting, and there they are- lucy and rosa…i do believe we behold a miracle here, grace in full bloom. and determination? to rebuild a hope, every minute when trains are missed and batteries go on the fritz…begin again and again and again. so much to learn here, such wonderful teachers.
rosa, mother. such peace and devotion, as i read the piece, i thought of the quote, “to whom much is given, much is expected.” she knows her gifts, knows them well. with love, she moves mountains for her family. blessed be the storyteller here and the story. thanks….all love, take care.
Wednesday, May 21, 2008 – 07:10 AM
ahhh true, i love you because you always always get it. i do believe we behold a miracle, and another one as well: all of you who read these words and soak them in, like a sponge, you absorb the power of a story, and make it be not just someone else’s words but your own. you make the words make you live a little bit more fully in the moment and any other moment in which the words embolden you. i know, for days now, i’ve been whispering rosa’s name and mantra as i set out to do the things for my children that might otherwise have me pulling out my hair. like running out for poster board 10 minutes before the store closes because someone just remembered that the teacher said it would “be cool” if the african masks were mounted on a poster. or tearing apart the house for a baseball hat that needs to surface before the game begins in 3 minutes. all of this, cake. compared to what is asked of and given by beautiful magnificent rosa, and lucy. it is the power of story to transform. makes me think of what happens in a catholic mass, when bread and wine are transformed. sometimes, defying physics, objects can become more than they once were. i think it’s called a miracle. and i think it’s all around us. if we only live and breathe and fill our holy lungs. true, you are a miracle to me. you and what you do out in those fields. and all the rest of all of you, in the way you seek the light here in this sometimes murky world. the way you keep coming back to pull up your chairs. bless you each and every one….
Wednesday, May 21, 2008 – 07:53 AM
something beautiful happened today, and i want you to know. it’ll be in tomorrow’s tribune, and it’s on the website now.
here tis, for those of you who can’t forget the lucy & rosa story: today the board of trustees of the university of illinois announced the Rosa Trevino Scholarship, which will provide $1000 every year from now until forever for a student with disabilities pursuing an undergraduate education at uic.
it was all a big surprise. lucy only knew they’d been invited for lunch, and she and rosa sat and watched as the chancellor tried to make the announcement but broke into tears after a few words, and couldn’t regain his composure.
“i kinda heard the word, ‘scholarship,'” said lucy, “but he barely got out three words. so the president came up.”
indeed, the university president leapt to the chancellor’s aid, taking the microphone beside him, and saying they’d get each other through. he then went on to read the chancellor’s remarks, and made the whole announcement.
lucy called it, “the biggest honor ever.” she loved it, she later said, that her mama “is immortalized forever. like 100 years from now, 200 years from now, people are going to know her name. they’ll still be applying.”
as the whole room of some 200 faculty and university staff and the trustees, roared with applause, rosa told lucy it “felt like her heart was going to explode out of her chest.”
rosa told me, “never i got something so big.”
but that’s not all. last week, on may 15, on the floor of the U.S. Senate in washington, d.c., senator dick durbin saluted “the mother who never gave up on her daughter.”
he told their story, calling theirs “an amazing example of a mother’s love,” and then, by unanimous consent, inserted his tribute and the text of the original tribune story into the Congressional Record of the 110th Congress of the United States.
now we hear, people magazine is trying to reach dear lucy.
but lucy says what’s most touching–besides the $20 bill someone sent so she could go out and splurge on ice cream, and the angel card sent to her mama from a couple in tucson, ariz., with a $100 check tucked inside–are the letters from teens and little kids with SMA, as well as kids who don’t have SMA, who “now want to go to college because they heard my story.”
that gets lucy all choked up.
and i thought you’d like to hear the latest triumphs of lucy and her mama. i don’t think the story’s anywhere near ending. and i will keep you posted. that’s a promise.
Thursday, May 22, 2008 – 10:25 PM
I read the story in the Tribune this morning and thought “hope lives in this story.” We need to spread stories of goodness, hope and inspiration. As lucy says at the end of the written story – the hope she has given to other kids is the coolest part of it all. Indeed, indeed.
We need to find hope and this family and your story has given it to us.
Friday, May 23, 2008 – 08:42 AM
Somehow I missed this! How amazing and wonderful! Bravo to Lucy and Rosa, and also to you bam for bringing their story to all of us.
Tuesday, May 27, 2008 – 08:20 PM