June 8, 2008

Positivity: Rediscovering Lindsay

Filed under: Positivity — Tom @ 6:56 am

From Richmond, Virginia (video slideshow is at link):

Tuesday, May 27, 2008 – 12:00 AM Updated: 08:35 PM

Her days can be tiring and tedious, made worse by pain, frustration and doubt.

But just as often — maybe more so — the days yield little victories to celebrate in the larger battle that has become her life.

Recently, in the course of a long and not exactly pain-free afternoon spent sitting in a medical office, Lindsay Aronson Ess reached up to adjust her cap, high-fived a friend and, before her visit was over, signed her name. The signature was little more than an awkward scrawl, but to Lindsay it was a thing of beauty.

As she lifted pen from paper, a weary but satisfied smile crossed her face, and she let out a small cheer.

No big deal, you say.

But only if you have hands.

Then she walked — a bit wobbly but unaided — to her mother’s car.

Again, no big deal.

But only if you have feet.

That Lindsay is upright at all is a wonder, considering only months ago she was lying near death in a hospital, her body wracked by massive infection. Doctors saved her life but had to amputate her arms below her elbows and her legs below her knees.

She was 24 years old, a recent college graduate with a job waiting for her and a boyfriend wanting to marry her. Before her harrowing four-month hospital stay, her future had looked so bright.

By her reckoning, it still does.

She has spent the past five months regaining her health, learning to use artificial limbs and coming to terms with an unimaginable life detour.

“I definitely feel like God saved me for a reason,” she said.

Lindsay, whose family and close friends have come to know her as Lu or Lulu since her mom started playfully calling her Lindsay Lu as a young child, was born in Richmond, but she didn’t stay long. Her parents split when she was a year old, and she and her brother, Mehs, 18 months her senior, spent their childhoods with their mother, Judith Aronson, mostly in Northern Virginia and San Antonio.

During high school in Texas, she worked at a shoe store and discovered a talent for sales and merchandising and creating the store’s product displays. She also cared about her appearance. She and her friends would spend hours picking out the clothes they would wear for an evening out. When it came time for college, fashion struck her as a possible field of study.

Her mom had landed a new job in Virginia and was a graduate of Virginia Commonwealth University, where her father, Michael Ess, a jazz guitarist, teaches. When she learned about the national reputation of VCU’s fashion department, she thought, “Perfect. I’ll go there.”

She returned to Richmond and excelled in the fashion department, where she helped produce the annual student fashion show. She modeled in one show but preferred being behind the scenes, making things go.

“I like being in charge,” she said with a smile.

Her senior year, she served as student director.

“She found something she had a passion for,” said Karen Videtic, chairman of the department.

* * *

Lindsay graduated in May 2007 with a degree in fashion merchandising and was planning to return to VCU in January to teach the class that produces the show. She also had lined up a job to teach fashion marketing at the Maggie L. Walker Governor’s School.

Last summer she experienced a flare-up of Crohn’s disease, a chronic disorder that causes inflammation of the digestive tract. She’d been diagnosed with it a few years earlier, around the time she’d struggled with an eating disorder, bulimia, which began because she was afraid she wasn’t thin enough. The two are not believed to be related.

In July she was hospitalized for an intestinal obstruction. Surgery was recommended and performed Aug. 3 to remove part of her intestines.

Two days after the surgery at Henrico Doctors’ Hospital-Forest Campus she fell seriously ill. Surgeons had to repair a leaking section of her intestine, which had caused an infection and led to sepsis, a life-threatening condition that causes organs to shut down and a clotting cascade throughout her body. Her extremities were at particular risk.

Family and friends held vigils at the hospital. A former roommate, Mimi King, will never forget visiting Lindsay and seeing the consequences of the sepsis: her feet, except for toenails painted red, had turned black.

“It was devastating,” said King, “to see her like that.”

Surgeons tried unsuccessfully to save her limbs by performing surgery to widen her arteries. Soon after, her arms and legs were amputated.

She spent four months in intensive care. Dr. Kenneth B. Brown, a vascular surgeon who led the medical team caring for Lindsay after the sepsis set in, said it was difficult to see someone so young whose “potential had been destroyed in some way.”

“But she didn’t look at it that way,” Brown said. “When I came to tell her we had failed and she was going to lose her limbs, she was taken aback for about 10 minutes. Then she looked at me and said, ‘Let’s go.’”

* * *

Friends say it’s easy to be drawn into Lindsay’s orbit. She’s warm, funny and opinionated. She knows the way things ought to be, and doesn’t mind sharing it.

On a warm March afternoon sitting on the front porch of the home where she and her mother live, Lindsay didn’t have the look of an assertive young woman. She sat in a wheelchair. She wore no prosthetics. A hooded sweatshirt was pulled over her head. She looked a little like a lost child.

She spoke softly about how much she missed her independence and how she hated having to rely on everyone for everything. She couldn’t answer the phone. She couldn’t walk to the door. But that didn’t really matter because she couldn’t open it anyway. She had barely started therapy in earnest using her prosthetics. The artificial arms were heavy and painful to wear; the legs awkward. She had a goal: to reach the point where she could stay in the house by herself.

But she didn’t sound as if she truly believed it would happen soon.

That’s not unusual for someone who’s suffered the recent loss of a limb, much less four, said David A. Lawrence, one of Lindsay’s physical therapists and founder of The Gait Center. They have hope, but not much confidence.

Outsiders see the spectacular end results of amputees learning to get around with prosthetic legs, Lawrence said. What they don’t see are the first overwhelming days or the ensuing weeks of relentless work.

“People don’t just put these legs on and go,” he said. “You’ve got to re-establish how your brain communicates and understand the information it’s now getting from the bottom of the leg, not the foot anymore.

“You see patients do amazing things, and Lindsay will be one of them. But it’s hard to get through to anyone the boring, tedious, laborious effort it takes.”

During those early appointments, Lindsay barely spoke. She needed help standing and sitting, and she struggled, even with the aid of a therapist, to shuffle her prosthetic feet while using a walker. She strained, sweated, bit her lip and uttered an occasional expletive. It’s not working hard that troubles her, it’s failing — and being doubted. She seethed after a therapist told her it was unlikely she’d drive a car again.

* * *

Lindsay has good days and bad, the bad usually linked to medical issues, not motivation, although she’s not above frustration and dejection. During one particularly trying afternoon when she had been disappointed by the size of the artificial hands offered her — one pair was what she called “man hands,” the other like a child’s — she muttered, “I wish I could have just one finger. You know how many things you can do with one finger? I could press buttons on the phone, use the [TV] channel changer.” She paused and smiled. “Pick my nose.”

The self-pity generally doesn’t last long. Things are moving fast. She’s made significant progress in the past three months.

Now, she can walk without anyone’s help. She wants to run. Lawrence said there’s no reason why she won’t be able to. It’s only a matter of time.

“It’s been neat to see it take shape in her mind and click as she realizes, ‘I can do this,’” said Lawrence. “Now you see Lindsay joking, cutting up, giving people a hard time. You can see her personality really coming back.”

Learning how to walk again is only part of her recovery. She goes to occupational therapy to learn to use her prosthetic hands and arms to feed and dress herself. Try eating a sandwich with not-very-nimble artificial hands or hooks and not crush it; try buttoning a button or putting on a bra.

She spends hours being fitted for artificial limbs and having them tinkered with at Hanger Prosthetics and Orthotics at Grace and Belvidere streets. She has a long list of physicians she sees.

Health insurance is covering most of her medical needs — for now. Her private insurance expires this summer, and when that ends, she’ll need to acquire a new policy or rely on Medicaid.

Lindsay and her mom share a house in northern Henrico County and are getting by financially at the moment, as her mother says, on the kindness of others. Aronson quit her teaching job last fall to be at her daughter’s side while she was in the hospital and then to care for her at home. Their income is limited to Lindsay’s Social Security disability payments and gifts from family and friends and even strangers who have rallied behind them in remarkable ways. A pair of community concerts and an art show raised more than $50,000. Friends also set up a Web site — www.loveoflindsay.com — to encourage contributions.

Meantime, Lindsay’s medical bills are still arriving, as are everyday bills. Aronson figures the medical bills total “in the millions,” though insurance has covered a lot of it. She doesn’t know yet how much the family will be responsible for. Lindsay’s school loans are coming due. Aronson and her daughter have not taken legal action, saying their primary focus is on Lindsay’s recovery.

Aronson said an unexpected positive has been the opportunity to “make a lot of new friends.”

One was Tom Martin, a building contractor who volunteered to make modifications to the house that included installing ramps and re-hanging a bathroom door so it opens out to accommodate a wheelchair.

Another is Stephanie Sill, one of Lindsay’s intensive-care nurses. Sill, who’s worked as an ICU nurse for 15 years, said she has “never been through as grueling an emotional experience as I shared with Lindsay.”

Sill said she’s grown close to many of her patients, but she’s never bonded with anyone the way she did with Lindsay. Since Lindsay left the hospital, Sill has taken her to the mall and to church, and she’s stayed with her at home to give Aronson a break. She tries to visit at least once a week.

“It’s been a blessing to go through this with her,” Sill said. “It’s made me look at my life so completely differently.” …..

Go here for the rest of the story.

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