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Lindsay Ess celebrates her life, her new hands and hard-won entry into adulthood
Ess’ milestone

Lindsay Ess celebrates her life, her new hands and hard-won entry into adulthood

Richmonder is putting on first fashion show since double transplant

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She stood in the middle of a group of young fashion models, offering instructions and suggestions, animatedly talking and gesturing. She pointed, tugged her sleeve and wiped her forehead. At one point, for emphasis, she reached over and placed her right hand on someone’s shoulder.

It was all as natural as could be, which is not noteworthy except that a little more than 18 months ago, Lindsay Ess didn’t have these hands. They belonged to someone else.

“It’s nice to be back, to be around people,” Ess said on a recent evening in the Richmond apartment she shares with a roommate. Of her transplanted hands, she said, “They’re coming along.”

To witness Ess nonchalantly yet confidently moving around a room, chatting with friends and smiling is nothing short of remarkable, considering the long and painful road she’s traveled.

A few months after Ess graduated in 2007 from Virginia Commonwealth University with a degree in fashion merchandising, a major infection invaded her body following intestinal surgery, almost taking her life and leading to the amputation of her hands and feet.

In the ensuing years, she struggled to learn to use prosthetic arms and hooks and chipped away at perhaps her biggest loss of all — independence — by teaching herself to use her residual arms to feed herself, brush her teeth and fold laundry.

But the residuals and hooks never could fully substitute for hands and fingers and, soon after her amputations, she became intrigued by the possibility of a hand transplant. When the opportunity arose for her to participate in the fledgling hand-transplant program at the University of Pennsylvania, she happily accepted and went through a rigorous physical and mental evaluation.

In September 2011, donor hands became available. After an 11½-hour surgery, Ess had hands again, though that was only the beginning of a long, arduous rehabilitation process. She has made great progress in the past 18 months — “exceeded any expectation we had,” said Dr. L. Scott Levin, the lead surgeon — and she is ready to celebrate.

Ess turns 30 on Friday and, to mark the occasion, she is returning to something she knows well: producing a fashion show. The event Thursday evening will benefit the Richmond-based United Network for Organ Sharing. Many of her friends have stepped up to donate food and other services to the event.

“She’s amazing,” said Lisa Schaffner, UNOS public relations and marketing director. Schaffner said Ess contacted her and suggested the show. “She is such a giving person, which is all the more remarkable by everything that she’s gone through the last several years.

“I’ll tell you what, even after she had the quadruple amputation, nothing slowed that woman down. Nothing. Not then, not now. She makes things happen.”

The fashion show is Ess’ first since the transplant. In fact, she never saw the last show she worked on. While putting it together in September 2011, she was urgently summoned to Philadelphia: Her new hands were waiting.

Ess vividlyremembers the moment the hands quit being cumbersome accessories and started feeling as if they were finally part of her.

“I was in my bed at the transplant house (in Philadelphia) and I was yawning like this,” she said, stretching her arms above her head, recalling the morning about three months after the surgery. “I lifted my hands and looked up and, all of a sudden, this finger did like that” — she wiggled her right index finger slightly — “and I was like, ‘Mom! My finger moved!’ ”

Her excitement was shared by her mother, Judith Aronson, who has been her almost-constant companion and source of support since the amputations, but such moments of revelatory joy often have been separated by days, weeks or even months of ridiculously hard work.

“She’s gone a lot faster than other transplant patients,” Aronson said. “But it’s still hard to accept that it takes years for everything that needs to come back to come back.”

Ess’ bilateral hand transplant was the first and only one so far performed at the Hospital of the University of Pennsylvania. Most recently, an Iraqi war veteran who lost all four limbs in combat underwent a double arm transplant in December at Johns Hopkins Hospital in Baltimore. Hospital officials said he is one of seven Americans who have undergone successful double arm or hand transplants.

In Ess’ case, the donor’s forearms and hands were attached just below Ess’ elbows. Bones were attached with plates and screws; muscle groups with anchors; arteries, veins and nerves with sutures. In particular, the restoration of nerve function in the hands, as nerves grow into the muscles of the forearms and then into the hands and fingers, is a slow process that can take months or years, Levin has said.

The nerves have indeed grown into her hands and fingers, allowing Ess to gesture and brush her hair (but not style it). But they have a distance to go before her fine motor skills mature to the point she can pick up a small object like a needle or apply makeup as well as she could with her hooks.

Patience is a difficult lesson when you’re about to turn 30 and most of your 20s was spent learning (and relearning) toddlerlike basics such as walking with prosthetic legs. Ess acknowledged she can get discouraged and angry when things don’t proceed fast enough or when there are setbacks or when she gains weight because of the medications she must take. (She has lost most of the excess weight and looks forward to getting back to her toned, fit, old self.) When the stress piles up, it then becomes an emotional struggle to devote multiple days a week to rehab or therapy, a necessary component to continued improvement.

But Levin marvels at how well Ess has done, saying she has been “tremendously motivated.”

“We’ve had a team effort, actually led by Lindsay, to accomplish something in medical science that none of us would have felt possible,” said Levin, the chairman of Penn Medicine’s department of orthopedic surgery who sees Ess every few months when she returns to Philadelphia for checkups. “She has been courageous … and exemplary in terms of her determination and her compliance with all aspects of her care.”

Ess is an inspiration to many from afar, a fact she understands and appreciates because of her unique circumstances but prefers to downplay. “I just think people underestimate how they can inspire others on a daily basis, just by being who they are,” she said.

But those who know her do not undervalue her impact on their lives. Though she is 20 years older, Robin Pugh Yoder found Ess to be a guiding light in how not to be afraid to chart her own course.

Yoder, a competitive athlete and an oncology social worker, lost a leg to cancer in 2010. She had read of Ess but did not meet her until early in her own recovery. Yoder was in a clinic, learning to walk again, actually “wobbling,” she said, at one end of a set of parallel bars. Ess was at the opposite end, doing her own work.

“Outwardly, I didn’t exhibit many bad days, but this particular day was one of my tougher emotional moments when the realization of what I was facing was at the point of overwhelming,” Yoder recalled. “I was fighting back tears, looking at her, when she hollered down to me some encouraging words and then proceeded to walk towards me, introducing herself to me and to (Yoder’s teenage son) Isaac.

“It was at that moment, I saw hope come into Isaac’s eyes for me as he tried to process seeing her physical losses yet witness her successes all in a single moment. But that moment had the same impact on me as well. It was hopeful.”

Yoder and Ess became friends, exchanging many emails on sleepless nights as Ess helped Yoder gain perspective on expectations, grief and healing. Yoder has gained a foothold in her new life and has returned to competing in triathlons, so now they cheer each other on. That is easy to do, Yoder said, for someone such as Ess, who “works hard, adapts to the challenges, has a sense of purpose and a desire to succeed through the odds and a touch of humility along the way.”

Like Yoder, Ess believes she has found her way back to a “normal” life, quite ready to kick her 20s to the curb and experiencing the same mixed feelings as most any young adult: “Getting ready to turn 30, confused … sometimes happy, sometimes unhappy. Sometimes I want to be a hermit for two weeks, sometimes I want to go and paint the town.”

She’s not sure exactly what she’d like to do with her future, but she’s considering graduate school and is looking at something like rehabilitation counseling. She might like to work with wounded veterans. Whatever she does, she wants to help others. She wants to have children. She doesn’t want to be alone.

She believes she was a still a kid when this whole ordeal started, and she’s convinced she’s very much an adult now, feeling the sort of responsibility and gratitude that comes through when she talks about her hands. They are, she said, a gift — but a gift that one family, whom she does not know, paid for with a heavy price.

“Even though this is so great … and I’m with friends and stuff, there’s still a family that’s mourning,” she said, “and that makes me sad.”

She would like the donor family to know how well things are going and how grateful she is and how she will not squander their gift. That also goes with being an adult, she said: learning to do the best you can with what you have.

“God made a path for me,” Ess said. “I’m walking on that path now. It’s just a different path than everybody else, but it’s still a path that God has set, and I have to have faith.”

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