Written By: Nancy Falco Chedid, M.D.
Note: This work is closely based on real events and is autobiographical. Except for my own first name, all identifying information has been withheld or changed to the best of my ability.
The afternoon began pleasantly enough. Mind-numbing lectures behind me, I stepped outside and imbibed the balmy air of a beautiful day. The sole purpose of my life, at that moment, was to put distance between myself and anything remotely related to the study of medicine.
But then there was Catherine. My effervescent classmate was approaching at a healthy trot, indomitably as a cavalry charge. In the past, I had evaded invitations to join her in all manner of do-gooding; this time I was captive to her relentless sweetness and sincerity.
“Nancy,” she said, “I’m driving out to Syllford Clinic. Why don’t you come with me?” The apparition I had summoned, of iced tea and a plate of calamari at a harborside café, receded intooblivion.
I heard myself say, “Sure, Cathy, I think I can manage that.” She flashed a smile with a shade of triumph.
I knew that Catherine’s older brother, Andrew, was rounding out his surgical training at Syllford. On most Friday afternoons, like this one, the two siblings’ labyrinthine schedules aligned and they were able to get together for coffee.Catherine’s enthusiasm for the visits was understandable, even admirable. But I wasn’t quite sure about this clinic; for me it held (and still holds) an air of mystery – which may well have been by design.
Syllford could be found, by those in the know, deep within a gorgeous, hilly, wooded area that was otherwise residential. The place screamed — tastefully, of course — “blue blood” and “old money”. The building’s entry hall retainedtrappings of its original incarnation as an expansive Victorian house, with darkly paneled walls, gilt chandeliers, and the rest. There was no hint of the modern surgical facility that stood beyond the erstwhile parlor doors.
Today, two facelifts were on the schedule – which was typical, as I learned. VIPs seeking a veneer of perfection flocked to this place. While some other cosmetic clinics had private back doors so that patients in unsightly bandages could exit discreetly, here the entire surroundings were secluded. The very rich and very famous could be cloistered, from the time of arrival through the moment they were whisked away behind blackened limousine windows.
According to Catherine, occasionally a patient would be discharged with a comical face sketched on the back of his headwrap by an impish surgeon. This was all in good fun, since the patient was invariably in on the joke. But such antics belied the mission of the inscrutable Syllford Clinic.
Aside from the cavalcade of cosmetic procedures, the clinic saw a steady flow of complex reconstructive cases. In their crusade to restore patients to normal function in society, orthopedic and plastic surgeons battled the ravages of trauma, burns, congenital deformities, and disfiguring diseases. Certain patients, mainly youthful ones, had conditions that required multiple operations in tandem with physical therapy or wound care. Logically, then, Syllford provided thoseservices within its own recovery and rehabilitation unit.
Catherine had seen many of the same patients during successive visits; she suspected that some had become long-term– possibly indefinite — residents of Syllford. (And I suspected that she visited this place not just to rendezvous with her brother, but to nourish her own charitable soul by keeping the residents’ company.) Evidently a miraculous infusion of grants, donations, and clinic profits were funding the patients’ care; but to us, the specifics of the arrangement would remain obscure.
As we sat in the entry hall, the appointed time for coffee had come and gone, and Catherine forecast that her brother would be delayed even longer in the O.R. “I know,” she said brightly. “While I’m waiting, I can introduce you to the girls.” She had previously mentioned these two patients in passing, describing them only as giggling teenagers and “best buddies”.
But no sooner had she made the suggestion, than Andrew appeared, in surgical scrubs. He apologized for the busyoperating schedule; he had little time to spare. I urged Catherine to seize this precious “coffee moment” with her brother.
Running off, she called over her shoulder, “Maybe you can still chat with the girls. They usually hang around the library.” She gestured toward an arched doorway draped in burgundy velvet.
I approached the library entrance, and a voice trumpeted from within, “I thought I heard Cathy!” The owner of the voice poked her head around the velvet curtain. Though obviously crestfallen on seeing me instead of Catherine, she succumbed to curiosity and stepped out.
Now, I am not a tall person; my close friends have been known to call me “vertically challenged”. But it occurred to me that, in order to meet the gaze of this teenager, I had to look downward. Taking in her facial features and the form of her arms and legs, I identified her condition as achondroplasia – and commended myself, in silence, for my diagnostic skills.
Achondroplastic dwarfism is fairly rare in the overall population, but it is the most common kind of dwarfism. In truth, even the medically uninitiated would probably recognize its typical physical traits – prominent forehead, short limbs,torso of normal length – especially since there are celebrated scholars, actors and athletes, among others, who share this condition. I guessed that the young person standing before me was receiving treatment at Syllford for severe bowing of her legs, another trait associated with achondroplasia.
On the faculty of our medical school at that time was a physician-scientist with a fervent interest in genetically determined diseases like this one. Statistics have repeatedly demonstrated “normal intelligence” among those with achondroplasia. But our specialist would scoff at the sterile research data, insisting that these individuals were rather moreintelligent than the general population.
So many people with the condition had sought medical care at our institution, that some had taken up residence in the surrounding neighborhood, and more than a few had become valued employees of our medical center. Within the hospital community, the faces of workers with achondroplasia became familiar faces. In the eyes of our medical students (myself among them), their “peculiar” features began to seem very nearly ordinary.
So I felt quite at ease, launching into small-talk with the teenager who was now looking up at me — and sizing me up. I began, “You were right when you said you’d heard Cathy’s voice, but she’s off having coffee with her brother. I’mNancy, her classmate. It’s really nice to meet you.”
Relieved and smiling, the new acquaintance gushed, “I’m Jackie. It’s great to meet you, too!”
We exchanged niceties. I inquired about her age, her favorite school subjects, her favorite music. But then she stopped me. “Wait,” she said, “let me get my buddy.”
Jackie turned toward the library. “Lucinda,” she called, “come and meet Cathy’s friend!”
Two sounds penetrated the velvet curtain – a dainty but unmistakable squeal of delight, and then approaching footsteps. My first glimpse of Lucinda was her silhouette as she stood under the arched doorway, backlit by the sunset gleamingthrough the library’s rear window. She had the bearing and deportment of a dancer, and I guessed that she was taller than her friend Jackie by a foot, if not more.
Presaging my future interest in hand surgery, the next features to draw my attention were her fingers, delicately holdingthe curtain aside. I gasped (inaudibly, I hoped) at the sight of their taut, shiny skin, marred by scars and ulcerations. I recognized the hallmarks of the autoimmune disease scleroderma – which, in fact, was the particular cross that Lucinda had to bear. But worse, much worse, her digits were oddly short and lacking nails. And so, it appeared that lovely Lucindahad lost the tips of all her fingers.
To blame for the tissue loss and scarring, were the sinister agents of scleroderma: inflammation and spasm of small blood vessels, and abnormal deposition of collagen. Lucinda, so young and so brutally afflicted, must have had a rare and aggressive form of the disease. I felt satisfied that this was a fair-comprehensive-assessment-based-on-my-astute-clinical-observations. In reality, however, I remained desperately ignorant of how unprepared I was, for what was yet to come.
Lucinda said a lilting “hello”. I intended to return the greeting, but none was forthcoming. It remained lodged in my throat – because I had seen her face.
My encounter with Lucinda would prove to be life-changing. I have come to believe that my experience should be relayed in unadorned detail, for the benefit of others. But even now, years later, the words come haltingly. Can I tell the tale and still uphold the dignity of the human being who is Lucinda? I pray that her privacy may be safeguarded by her seclusion, the passage of time, and the name I have lent her for the purpose of this essay: Lucinda, meaning “light”.
To describe her physical features, which caused me such distress (at the time), I take refuge in the plain language of clinical narrative:
Lucinda’s scalp was hairless, save a few thin patches of stubble. The skin around her mouth was puckered and parched, and scar tissue hampered the motion of her narrowed lips. The tip of her nose was entirely absent, causing her nostrils to appear wide and skeletal. The demon scleroderma had not spared even her eyelids, with the result that her eyes seemed to protrude alarmingly. (I regret that I was reminded, involuntarily, of ghoulish images promulgated by the “entertainment” industry to entice and haunt the viewers of horror films.)
“Why didn’t Catherine warn me?” was my first coherent, selfish thought. The second was, “I hope I can get through this conversation, without the girls sensing the shock that’s piercing my soul.” I felt revulsion, shame, and fear, and then embarrassment at my faltering equanimity. Finally, in the little space that was left in my heart for Lucinda and her loved ones, there appeared the seed of great sorrow, and the spark of a firestorm of rage at the unjustness of this young woman’s fate.
And yet – it struck me as remarkable, that Lucinda could radiate openhearted amiability, despite the restriction of her facial motion. Gracious, kind, and deferential, her courtly manner was a pleasing foil for Jackie’s unabashed exuberance. I will forever be indebted to the girls, for taking the reins of our 20-minute discussion. I don’t remember a word of it(though I do recall feeling slightly less shaken, by the time they left for a tutoring session in English literature).
Neither do I remember much of the conversation I had with Catherine during the drive back to the city. Probably Imanaged a self-conscious, superficial accounting of my meeting with Lucinda and Jackie. I hope I told Catherine that it was an extraordinary experience – which, regardless, would have been a spectacular understatement.
That evening, and throughout the next several days, my thoughts duly drifted from self-absorption to concern about Lucinda and those dear to her. I pictured them as a loving family; given Lucinda’s luminous gentility, it would have been difficult to imagine otherwise. I supposed that she would remain cloistered for the rest of her days, and that she and her family would accept this as the least dismal of their dismal options. There was little prospect of restoring her physical appearance; the entire armamentarium of reconstructive techniques would depend for success on the very blood supply that was blighted by scleroderma.
Society was not, and is not, ready for the Lucinda’s of the world. On the contrary, we are too easily smitten by unattainable ideals of shallow perfection; and we tend to shield ourselves – and especially our youngsters — from what is perceived as “ugly”. There is no denying our visceral response to the scary or the different, which we might dismiss as the other in order to manage our fears. But as thinking, feeling human beings, it is within our power to surpass these darkerimpulses.
I hold in high esteem the heroes who have taken steps in this direction – including the artists, writers, and filmmakers who have sensitively portrayed disabled or disfigured individuals for a broader audience. Sadly, though, the transformation of society as a whole is not on the near horizon. In the meantime, there are those who would channel their sense of powerlessness and frustration by delving (as I did) into professions like reconstructive surgery — in the hope, at least, of transforming patients’ lives one by one.
During the few months following my initial visit, and until hospital duties supervened, Catherine and I continued to frequent the Syllford Clinic. Unexpectedly, I began to look forward to these occasions, each one more than the last. By the end of my third meeting with Lucinda, it occurred to me that the anguish formerly evoked by her presence was gone.This might be construed as mere psychological tolerance, a desensitization to her appearance. But I rejected this rationale as vastly inadequate for my transcendent experience:
It was quite as if a mask had been lifted from Lucinda’s face. Her heretofore horrific features had become, for all intents and purposes, invisible. Now when I looked at her, I saw Lucinda, not her veil of imperfection.
This revelation ushered in a torrent of elation, gratefulness, and insight. I now recognized that one human being could learn to truly know another; knowledge thus acquired could not fail to extinguish the relevance of physical appearance. I have never had cause to waver from this, my firm conviction. And to this day, I marvel that I was blessed to know Lucinda.
I wished that I could thank her for these gifts. I longed to help Lucinda see — that her life had a sublime purpose; that the enlightenment I had received through her would inspire my mission of patient care; that the fragile cloister of her body had no power to contain her magnificent spirit.
Yet, I feared that these exalted truths would turn to dust, if I dared to utter them in the banal language of our everydaybanter. I never found the courage to tell Lucinda what I thought. Perhaps she already knew.
Nor did I succeed in thanking my classmate Catherine, for luring me to Syllford Clinic on that first beautiful day. Every attempt at expressing my gratitude seemed so meager and so trite, that eventually I abandoned the enterprise. But I did convince her to take one Friday afternoon off, and join me for calamari at the harborside café.
Author Bio:
Nancy Falco Chedid, M.D. is a writer, musician, physician, and educator. She has lived and worked in the eastern U.S. and the Middle East. She launched the Humanities in Medicine program at Lebanese American University School of Medicine, where she was Director of Student Affairs. Her published works include essays in life writing and illness writing, scientific articles, and a memoir. At the moment, Nancy resides in Cambridge, Massachusetts, where she teaches English as a second language for healthcare professionals and sings in an assortment of choirs.