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Photo by Ash Daniel
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At Parham Doctors’ Hospital, Ess undergoes occupational therapy with Kathy Jarrell, including electrical stimulation to develop dexterity and strength in her new hands Photo by Ash Daniel
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Prepping for a photo shoot to promote her UNOS event, Lindsay Ess gets some finishing touches from Kate Johnson and Natalie Meredith Photo by Ash Daniel
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The woman of the hour, Ess takes a curtain call at the conclusion of her fashion show. Photo by Ash Daniel
Lindsay Ess shifts her weight and pivots somewhat awkwardly out of the minivan passenger seat and into the chilly parking lot of the United Network for Organ Sharing headquarters near the Virginia BioTechnology Research Park. Greeted damply by a penetrating drizzle, she winces a bit as she works her way into a standing position on her prosthetic legs.
Ess rebuffs repeated offers of assistance, instead hoisting her purse over her shoulder and taking off across the parking lot.
To call her determined would be far too simple an assessment. Resolved? Resigned? Brave? Numb? After the physical and emotional journey she has weathered since the summer of 2007 — when the delicate-featured VCU fashion grad lost both her arms and legs to a massive sepsis infection — it's easiest to say life is complicated.
In September 2011, things got even more complicated when she became among the first women in the United States to receive a double-hand transplant. The surgery restored a measure of what she lost, but also added new encumbrances both physical and emotional.
Now arriving at UNOS, she's marking a milestone. As she turns 30, Ess prepares for yet another of the seemingly endless life changes that have redefined her. This time, the change is of her own making. She says that her most recent fashion show, a benefit for UNOS, will be her last.
"Everybody's Doing It: A Fashion Affair with Lindsay Ess" is the planned final nod to her fashion-marketing past. In part a birthday celebration she's throwing for herself, it's also a last hurrah and a warm thank you to all of the friends and colleagues she has worked with over the years.
And she wants the late-March event to be perfect.
She normally would take the stairs up to the sweeping glass-and-concrete UNOS building. But today she chooses the long, sloping ramp that winds through a landscaped courtyard. She's partial to the idea of leading guests to the fashion show through the ivy-lined, stone-walled memorial garden. It's a grander entrance to the dramatic building that is home to the nation's organ donor coordinating organization.
The contemplative walkway serves as both handicap ramp and as the National Donor Memorial, a sort of Zen garden to life and loss. Ess pauses and shivers a bit in front of a vertical sculpture near the entry to the walk's cold stone grotto. She doesn't much like the Wall of Tears, a conceptual piece comprising a sheet of water flowing endlessly down a wall punctuated by stone breaks carved with words: Sister, Brother, Husband, Daughter. The effect, especially on this drizzly day, is one of overwhelming sadness.
Ess breaks the silence. Her words are simple — delivered in frustration — but her meaning is as complicated as everything that's led her here.
"Why does it have to be so down?" she growls. "This isn't Vietnam."
Ess is alive. The people saved by organ donation are alive. And the rest of this memorial walk reminds her that, in a vital way, the sisters, brothers, husbands and daughters who are commemorated here also live on.
Turning 30 is a milestone, and she is in an introspective mood. After years of illness — first a struggle with bulimia and then Crohn's disease, then amputation of her hands and feet, she's reasserting control and plotting a new direction.
"The fashion thing, I've been there and done that is what I see — mastered that, check that off," she says.
The fashion industry, in spite of all its flash and allure, no longer thrills. Her pace, she says, has slowed, and more important, her priorities have shifted. Chasing glitz and vamping to stay on top no longer hold much attraction. "In fashion, if you're caught slipping, then there's like 10 or 12 people behind you — if you go to New York or L.A., we're talking, like, thousands or hundreds," she says. "I think you have to be cutthroat, driven as a mo-fo. You have to walk the walk, talk the talk. Like, everybody has to know your name." Both before and since her illness, Ess has maintained that drive. In the charity fashion circuit, she's become the go-to girl for production. But since getting her hands, she says she's ready to let go. "And so that used to be me," she says, though never the cutthroat part. Rather, it was pride and self-respect that drove her before. Now, what drives her is the desire to help others regain some measure of self-respect, pride and confidence. Ess says that this final foray into fashion is her launch into a far more important field: helping heal others who, like her, have experienced the loss of limbs and the emotional rollercoaster of post-traumatic stress disorder. She plans to apply to graduate school, earn a degree and specialize in counseling for people whose suffering she can understand all too well. In the UNOS building's cavernous lobby atrium, Ess submits to a shower of hugs from Lisa Schaffner, the organization's effervescent public relations director. Schaffner's two assistants, Michelle Tolliver and Mandy Ames, smile as she gushes at Ess' new arms, grips her hands warmly and then quickly turns the conversation to business. "Hey, Lindsay, how many tickets are you thinking?" Schaffner asks, before launching into a mile-a-minute planning session about the width of the runway, the winding route of a path from a planned backstage area and how to simulate tea lights in paper bags that will line the path. "It's so exciting, but let me tell you, two nights ago I woke up in a panic," Ess says, gently putting her hand on Schaffner's. The gesture is casual, easy to overlook. But it's also electrifying, considering that a little more than a year ago, a touch like this would have been impossible. Schaffner smiles, aware of the gravity of the moment, glancing at Ess' hand. "You're the one who told me not to worry about anything," she says. They turn to talking about food for after the show, and whether there will be wine and beer, or just wine, but there's a tension now. Ess' hands are almost like another presence in the room, a subtext to everything that's said. "During the post-op — I mean, the post-reception," Ess says, catching her slip with a laugh that breaks the tension. "I've had way too many post-ops in my life." Schaffner and her assistants steer Ess to a swanky leather-and-chrome lobby couch, where Ess takes a seat flanked on either side by the UNOS women. The conversation shifts from that of an event-planning meeting to something more akin to a morning talk show, a sense heightened by Schaffner's years as a TV anchor at WRIC. Ess shows off the scars just below her elbows where bone was pinned to bone, skin grafted to skin and intricate networks of blood vessels, arteries and nerves were attached during a nearly 12-hour surgery. Today, the hands are a near-perfect match, aside from a bulky area of skin near the attachment points that later will be trimmed during yet another surgery. "I have like five elbows, obviously," she jokes, but the flesh tone is nearly identical to her own milky, almost porcelain-white skin. The biggest adjustment, Ess says, was that her own arms had little or no hair on them, and awakening after surgery to see her new forearms with dark, downy hair was disconcerting. "I was a little bit upset at it," she says, though it's a feeling she got over quickly after her surgeon, Dr. L. Scott Levin, told her that those fine little hairs were like her canary in a coal mine. "I kept the hair because it shows if it's still growing, it's not rejecting." Ess belongs to a Facebook group of arm-transplant recipients, 12 people who share similar experiences and concerns. Rejection of their transplants is a common fear shared in the group, Ess says. All deal daily with the myriad emotional and physical tolls of regaining limbs previously lost. Sometimes those emotions overwhelm. "Three of them want [their new arms] off," says Ess, who has never entertained similar thoughts after her surgery. "I never had a dream without hands. I had tons of dreams without legs." But there are some regrets. "Sometimes I feel like somebody died for me to have hands," she says, responding to a question from Schaffner about her adjustment to the new limbs. "You know, a lot of recipients feel that way," Schaffner says, familiar after years at UNOS with the nagging regret — survivor syndrome — about donors whose deaths provided new or better lives for recipients. "You're here with two working arms because of that gift. But [the donor] wasn't going to be here."
Lindsay Ess grew up all over — Richmond, the Washington, D.C., area and San Antonio. Her father, Mike Ess, is a longtime fixture in the Virginia Commonwealth University music department and a well-known guitarist. He and Lindsay's mother, Judith Aronson, met when Judith was attending VCU, first as a theater student and then as an education major. Though her parents separated while she was very young, Ess' lifelong ties to Richmond remained strong. Her aunt also attended VCU. Despite the early turmoil of frequent moves, Ess grew up confident and competent. "She was always the one that all the other girls came to for advice," Aronson says. "We moved a few times, from Richmond to D.C., to Richmond, to D.C., and then to San Antonio. And everywhere she went, people gravitated toward her. She always had the role." And she always showed aptitude, too. Her first real job, at 15, was at Journeys, a chain shoe store "at the big mall in San Antonio, when Journeys was the popular shoe," says Aronson, and her bosses quickly sized up their young employee for what she had to offer. "She started doing their visual displays and they started giving her a lot of responsibility — that's when she started enjoying the whole retail and, you know, fashion thing." All that responsibility, and the praise from her bosses, made Aronson proud of her tall, slim, blonde daughter whose presence seemed older than her years. But it was during this same period that darker emotions crept in, feelings of doubt and inadequacy. "You just kind of cycle," Ess says of her eating disorder. She recalls vividly the day it took over. "I was in high school, I was getting ready to go out with friends and I had this pair of jeans — skinny jeans — and I was putting them on and I was like, ‘Man, these are tight on me. I'm getting fat.' "And one of my good, good, good friends said to me ‘You are getting fat,'" says Ess, who eventually dropped to a disturbing 108 pounds on her 5-foot-5 frame before getting back in control. "I got better. But then my stomach started hurting. A lot. Just because I got better didn't mean that I wasn't — that it wasn't affecting me. Then I started going to the gym a lot. Gym, gym, gym." These days, gym visits remain a regular part of her routine. Ess attends occupational therapy at the Parham Doctors' Hospital campus three times a week. For hours, she takes her place at a narrow table where she slowly works her fingers, thumbs and wrists, stretching and straining to control muscles in arms that have never received signals from her brain. In the 18 months since her surgery, she's outpaced many of her fellow transplant recipients with the speed at which her nerves have generated, slowly making their way down her forearms and into even her fingertips. Simple tasks — such as placing pegs in a board, spooning dried beans into a bowl and picking up a series of tiny plastic pegs — take work, all assisted by Kathy Jarrell, an occupational therapist hand-picked by Levin to work with Ess. "She's probably the highlight of my career," says Jarrell, her eyes flashing with encouragement as Ess cuts a hot pink "steak" with a specially designed rocker knife. Progress doesn't come easily. "My hands are in pain every day," Ess says, referring not only to the labors of exercise, but also the constant pins-and-needles electrical throb she feels as the arms become a part of her own nervous system. Aronson often stays with Ess during her OT sessions, but today she sits in a beige-toned lobby at Parham Doctors' Hospital. She sets aside her ever-present Kindle reader to tell her own story. She remains tormented, always looking back at what she believes was her near-fatal error of putting her own needs above those of her daughter. "I really disliked San Antonio from the minute that we got there," says Aronson, who had moved there to be closer to her mother and sister after the breakups of her two marriages. In San Antonio, she found success as a sales rep in the meat industry. But Texas just got worse for Aronson in Ess' senior year, when the meat distributor closed its San Antonio office. Without a job or friends, Aronson says she made a "big mistake" when she began looking at returning to Virginia, where her life had always been. "Lindsay was in her first semester of her senior year, and I was miserable. I wanted to go back — I thought it would be OK for me to go back, go back to Virginia and leave her with my mother and sister to finish her senior year. I left in December." Aronson remains convinced that her decision led to feelings of abandonment in her otherwise self-possessed daughter. Ess developed her eating disorder around this time. There's no proven medical connection between bulimia and Crohn's disease, the illness that eventually landed Ess in the ICU. But that's cold comfort for Aronson. "I feel responsible," Aronson says, adding, "My husband had left me. I was miserable in San Antonio. … Like [Lindsay], I was used to being social and being respected for my work and being successful at my work. I didn't have any of those things in San Antonio and I wanted that back. I guess … it was just very selfish of me.
Back home at her apartment, an ultramodern space in a converted 19th-century factory, Ess continues her efforts to cast off the old Lindsay and to emerge reinvented. Her room is busy, with pictures and posters covering the walls. One wall is draped in a massive, multicolored hippie tapestry. Bric-a-brac fills every surface. Those surfaces are the tops of antique dressers, spray-painted black to achieve a shabby-chic look. "This is not me — it's the old Lindsay," Ess says, sitting up on her bed to peck at the touch screen of her iPhone. "I can't even open the drawers. It's too busy. I'm getting rid of all of this stuff — going simple." She glances up, her eyes traveling around the room in disapproval. She tsk-tsks before settling back and casually nibbling at a fingernail: "It's a habit I had before," she answers without being asked. "I guess I picked it back up." Ess says the old Lindsay's bad choices remain all her own, and some of those even led to good things. The same path that led to the ICU also led her to God. Seemingly in control of her bulimia, and with the pride of success at Journeys, she came to VCU focused on fashion as a career. She quickly impressed her professors, inspiring a lasting devotion from many who saw true talent. She began dating a fellow student. He was older than she, and very self-assured, Ess says. Even with her own presence of self, she was overwhelmed. He wanted her to be beautiful, so in order to maintain a grueling schedule of work, school, exercise and play, she began taking energy pills. Their relationship was sometimes rocky, and they often broke up and got back together. It was during one of these breakups that Ess, who was raised Jewish, stayed overnight at her boyfriend's family home near Petersburg. "I believed in God," says Ess, who at the time was about 21, and a hip, stylish bartender at 3 Monkeys in the Fan. "My boyfriend's dad was like, ‘If you're going to stay here, you're going to church with us in the morning,' " she says. "So I wore my nice clothes, and we sat in the second row. I was, like, the only white person there. I mean, the only white person, period. I didn't notice it until I turned around and I was like, ‘Whoa!' It was a gospel Baptist [church]," Tabernacle Baptist in Petersburg. It was like nothing Ess had experienced. "The preacher, I just felt like he was talking to me — about forgiveness, and he was talking about how to forgive other people and to forgive yourself." She grows contemplative, her voice dropping to a reverent tone before trailing off to silence. "The reason that was important to me at that time was — he had this realness. It was very emotional. There's a lot of stuff I have to forgive." She converted to Christianity and began attending church on her own. "My relationship with God is — it's personal and nobody will understand it," she says. "He knows my life."
Aronson's feelings of guilt are entirely misplaced, as Ess sees it. Everything that's happened was according to God's plan. "I think that's why everything that happened to me happened to me and not somebody else," she says. "Because if it was somebody else, I would have been devastated — if it was somebody else I was friends with, or my family." While the experience clearly wracked her family, Ess says she hesitates to use the word trauma to describe the effects of her experience on the people closest to her. "My family had to go through it, so we're forever changed for that, but it's just, you know, there are times in your life where for some people — most people — there's some sort of, I don't want to say trauma. People have life-altering events that change them, that change their path. It just changes how they think. It changes what they think of other people." In Ess' case, she says, her experience has changed her, but it's also reminded her of a path that she very likely could have — should have — taken had she not gotten caught up in the fashion industry. She comes from a family of educators and nurses. It turns out that the fashion industry, for all her successes, was a detour. "My heart's always been in helping people," she says. "That's the way it's always been since I was a little girl. My mom used to tell me how I used to run ahead of her and open the door for her and other people who were coming. I've always been one of those people who care about other people more than myself." Ess says she's always had an unusual level of empathy for others, and she now sees that as a talent worth sharing. "I think my job is that God gave me this blessing that's also a curse — sometimes it keeps me up at night." But mostly it makes her want to return to school, to get a degree in counseling and to use her natural empathy to counsel others who've suffered as she has, either with the loss of limbs or with post-traumatic stress disorder. Ess sees an obvious need for her skills and experience with veterans returning injured or emotionally scarred after overseas deployment. "I feel like those people I can connect with so much more than the average person. They've seen worse, obviously, than I've seen."
Through everything, Aronson remains Ess' constant companion, confidante and occasional verbal sparring partner. Devoted and doting, she no longer works, instead spending her days ferrying her daughter to and from an endless whirl of medical appointments, as well as on across-town errands. Asked what else she does, she looks confused and a bit taken aback before responding: "I take care of Lindsay." After six years, the bonds between the two remain tight, but the edges have frayed some with the constant strain of a relationship based as much around their caretaker-dependent roles as around their mother-daughter roles. Sitting at Joe's Inn in the Fan — one of Ess' favorite restaurants ever since she was young — the two bicker about what Ess should order. Aronson worries about her daughter's diet, fussing over her tiny appetite. Finally she leaves to find a fork that fits in a special foam handle meant to provide an easier grip for Ess' new hand. "It's funny when I ask somebody for help," Ess says, marking her mom's absence. "You know, with coins or whatever. I say, ‘Can you help me because I had a hand transplant.' It's funny because they do it like they're, you know, used to people with hand transplants." It's an observation that bears out when the waitress comes to the table to take orders. Ess wants tattoos. The waitress has them — a nearly full sleeve on one arm. The waitress does a verbal dance around the issue of why Ess can't get them on her own arms, instead advising that the back of the shoulder is a good place for ink. Ess orders French toast. Aronson eventually returns and the bickering begins again, now over how much of her French toast Ess has finished. But the squabble ends quickly, and Ess turns back to other conversations. Aronson's face maintains a look of constant concern. "It's caused definite issues in our relationship, my being the only person that she has," Aronson says of her reprised parenting role. "We've always been close, but as a mother and daughter. I was always very, very, very cognizant of her independence and her privacy. I was independent and private when I was that age and I always admired that about her. She started working when she was 15. She did things on her own. She put herself through college." Now, Ess struggles to find that independence again, knowing there are some things she can't do on her own. Her morning routine is not easy. Sometimes putting on her prosthetic legs can take nearly an hour — residual limbs are prone to swelling — even with her mother's help. Even getting a drink from the fridge is no easy task. Ess can get the drinks out, but opening a canned soda tab or inserting a straw in a boxed drink requires more dexterity and strength than she's yet regained in her new arms and fingers. As her mother leaves each night, departing Ess' loft apartment in the city for her own suburban house in north Henrico, Aronson opens two or three drinks — a Coke, a Yoo-hoo and a juice drink — and carefully lines them up on her daughter's nightstand, enough to get her through to morning.
UNOS is hopping as crowds begin arriving for "Everybody's Doing It: A Fashion Affair with Lindsay Ess." The organ sharing nonprofit's echoing lobby is transformed. Arcing rows of white folding chairs line either side of a tea light-lined runway, and the early crowd mills about tables covered in crisp, white tablecloths and hors d'oeuvres. For many attending, this really is a fashion affair. Women promenade in fashionable silk scarves, expensive prints, shimmery jewelry and other finery that look as much like adornments as an effort to outdo what soon will come down the runway. Backstage is a flurry of activity. Only one hairdresser has arrived, and the DJ has gone rogue, deciding not to play music choreographed to portions of the show. In the middle of it all, Ess is a pillar of authority. Dressed in tight black leather pants, a black tank top that shows off her new arms — beautiful scars and all — and an accent pair of silver sequined hot pants, she stands with hands on hips as darting schools of girls lope past on high-heeled feet and in various states of undress. "My God, my hair is everywhere," says a model shimmying by with newly set loose curls bobbing as if gravity doesn't apply to the beautiful people. Elsewhere, other models drape, supine across couches and ottomans moved from the lobby to make way for the show. In a corner nearby, Mr. Stuffee, UNOS' giant plush mascot, his belly unzipped to reveal a cavity filled with huggably-stuffed organs, provides a twisted contrast to the glamour swirling around him. Several models talk about the local fashion scene, gossiping about the upcoming RVA Fashion Week: "Ever since Lindsay hasn't been there it hasn't been the same," says one, a tall, lanky man with black hair erupting skyward in a wavy bouffant 'do. "My first year, she was so strict," says another, agreeing the event has lost some of its snap and hustle since Ess bowed out two years ago before her hand transplant surgery.
Erico Jordan, 26, is attached to the aforementioned towering bouffant. A self-taught hairstylist who got his start in small, urban street fashion shows a few years back, he credits Ess with discovering him andhelping him hone his modeling skills.
"Lindsay is the person who brought me here," Jordan says, crediting her for seeing more in him than others who saw only the flamboyantly foppish kid from the bad end of town. They met at an audition. Lindsay was on a panel of seated judges as he strutted his stuff, and as the other five immediately gave him high marks, Lindsay was more critical, unwilling to accept half-done: "She said, "No, go do it again and don't look like you're ready to attack me." He did it again and Ess changed her vote. "Then I saw she was in a wheelchair," says Jordan, recalling being even more stunned that someone so vulnerable could exude such power and authority. "She really can teach and tell you how to perfect your craft," says Jordan, who went on to be a Virginia finalist this year for the Tyra Banks-hosted television show America's Next Top Model. And he says he's even more inspired by Ess since she got prosthetic legs and now her new hands. "From her chair, it had to really come from the heart. Now that she's up, that's amazing — really amazing." Ess hasn't told Jordan and many of the models that tonight will be her last show. He's stunned to learn about her plans. "I wouldn't even know how to act — I would make her [keep doing it]" he says, recalling Ess' most powerful lesson to him. "Lindsay told me to be myself. Don't ever let anybody change you." Jordan is the first model down the runway, decked out in a sharp polo with various bright blocks of color. His collar popped and a swagger in his walk, he arrives to a thunder of applause that overwhelms even the bass thump of the DJ's techno tunes. Ess is invisible, hidden backstage. She sticks to the advice she gave her protégé: The change she's making is of her own accord, and she's firm that she won't be swayed by others. As poised and in control as she appears, she's not changed her mind about her plans to leave this world behind after tonight. "I'm done," she says, taking a brief pause from shouting commands at the recently arrived second hair and makeup person. "Finito. I'm ready for this to be my last show." Clockwise from left: Left: Backstage, Ess and her models review some last-minute details before the UNOS event; right: