[Blindtlk] NYT article on Blind Face Transplant recipient

[Paul Wick]

Hi All,

Note the last part of this article, could someone in Vermont please
reach out to her, and show her that blind people can make hot dogs
independently!

Best,

Paul

October 25, 2013


For Victim of Ghastly Crime, a New Face, a New Beginning

By ABBY GOODNOUGH


THETFORD, Vt. — At 1:30 a.m. on Valentine’s Day this year, Carmen
Tarleton left her rural home here and drove through the frigid dark to
Brigham and Women’s Hospital in Boston. Her doctor had called hours
earlier with the news she had been waiting for: a suitable donor had
been found. She would get a new face.

Almost six years had passed since her estranged husband broke into her
house one spring night, beat her with a baseball bat and soaked her
with industrial lye that he squirted from a dish-soap bottle. The
attack nearly blinded Ms. Tarleton, a nurse and mother of two, and
burned her beyond recognition. She lost her eyelids, upper lip and
left ear. What remained of her face and much of her body was a knobby
patchwork of scar tissue and skin grafts, painful to look at and far
more painful to live with.

Now, after overcoming some initial fears, she was ready to receive
someone else’s features. After 15 hours of transplant surgery, Ms.
Tarleton, 45, emerged from the operating room with what looked to her
mother, Joan VanNorden, like a puffy, surreal mask. At first she
wanted to faint as she stared at the new face, smooth and freckled,
stitched to her daughter’s pale scalp. But when Ms. Tarleton started
talking in her old familiar voice — “Can’t you just get in here?” —
Mrs. VanNorden relaxed.

“I said, ‘This is who Carmen is now,’ and it really looked beautiful,”
she recalled. “Although it didn’t look anything like her, it was her
face.”

Face transplants are still an experimental procedure, the first having
taken place just eight years ago in France. Some two dozen full or
partial transplants have been completed worldwide, including five at
Brigham and Women’s, which used nearly $4 million in research grants
from the Department of Defense to do four of the surgeries. Arteries,
veins, nerves and muscles from the donor face must be painstakingly
connected to the recipient’s, in what Dr. Bohdan Pomahac, Ms.
Tarleton’s chief transplant surgeon, called “by far the most
complicated operation that I do.”

Yet the psychological impact of a face transplant is perhaps as
far-reaching as the surgical one. Unlike a kidney or liver or heart, a
donated face is visible to all, challenging recipients and their loved
ones to incorporate an entirely new countenance into long-held
perceptions of a person’s identity.

Ms. Tarleton’s appearance is still evolving: her scalp was so badly
burned that hair will never return to parts of her head, but her
donor’s hair, the same shade of brown as her own, is growing around
her forehead and temples. Her right eye remains closed, and her left
droops. Her face is sometimes masklike, betraying little emotion,
because the muscles are still reconnecting and she cannot yet move
them well. And that mask, oddly enough, looks like neither her nor the
woman who donated it.

But eight months after the operation, there is evidence that Ms.
Tarleton’s new face is more than just donated tissue, and is becoming
part of who she is.

When her family thinks, or even dreams, about her, they imagine her
new visage. “When someone at work asks me, ‘How’s Carmen?’ the picture
that comes up in my mind more and more is that face,” said Ms.
Tarleton’s sister, Kesstan Blandin.

Yet for Ms. Tarleton herself, the process of acceptance has been
trickier. For one thing, her poor vision keeps her from seeing herself
clearly unless she holds a mirror up close. “I don’t yet feel it is
‘my face,’ ” she wrote in a recent blog post. “I feel like I am still
borrowing it.”

Ms. Tarleton’s former husband, Herbert Rodgers, 58, pleaded guilty to
a charge of maiming and is serving a prison sentence of at least 30
years. Mr. Rodgers told the police that he had been angry at Ms.
Tarleton, believing she was seeing another man after they separated.

Ms. Tarleton underwent a number of reconstructive surgeries, but with
little success. When Dr. Pomahac called in May 2011 to propose a face
transplant, Ms. Tarleton’s mind first leapt to a “Twilight Zone”
episode that had jarred her as a child, about a man who could change
his appearance to look like other people.

“Initially I felt that it was very sci-fi,” she said in a recent
interview while curled on the couch in the modest home she shares with
her two daughters. But she and her family started researching, and
after a few weeks of weighing the pros and cons — for one thing, she
is likely to be on immunosuppressant drugs for the rest of her life,
raising her risk of infection and cancer — Ms. Tarleton decided to
forge ahead.

After a number of trips to Boston for physical and psychological
screening to determine if she was a good candidate, she got on the
donor list that fall. “It was like a big surprise, a big gift,” she
said. “I’d already accepted my disfigurement, fine. But I accepted it
believing there wasn’t an alternative.”

The things Ms. Tarleton wanted from a new face were more pragmatic
than aesthetic. Tight bands of scars ringed her neck, causing
debilitating pain. She drooled constantly and could not blink,
jeopardizing a synthetic cornea in her left eye. And with her face
frozen from scarring, it was hard for others to read her emotions.

For a time, she was devastated that she could not see “the old me,” as
she put it. But she moved on, writing a book about her physical and
emotional recovery from the attack and speaking publicly about the
experience. She seemed mostly unconcerned about her appearance.

But in December 2012, she gained a more urgent desire for a new face.
She had started taking piano lessons at a music shop not far from her
home. Her teacher was Sheldon Stein, an earthy, soft-spoken musician
with whom she felt an instant affinity. The feeling, it turned out,
was mutual. The two say they are in love.

“I kept looking in the mirror all of a sudden when I met Sheldon,” she
said. “I wasn’t insecure before. But now — now you have feelings for
somebody and now you have something to lose, when before, one of the
reasons I did so well is I had nothing to lose anymore.”

After the operation, she went through a harrowing three weeks when her
immune system rejected the face. But medications helped her accept the
new tissue. And some of the improvements she had hoped for came
shortly after. Her neck pain disappeared, and her left eyelid,
immobile for years, began to blink again. The drooling diminished, and
is likely to stop once she gets more feeling in her lips.

The transplant did not make Ms. Tarleton look like her donor, Cheryl
Denelli Righter of North Adams, Mass., who died at 56 after a stroke.
That is a typical outcome for face transplant recipients, partly
because their bone structures are different from their donors’.
Mysteriously, she now has a cleft in her chin, something neither Ms.
Denelli Righter nor Ms. Tarleton’s old face had.

Yet to Ms. Denelli Righter’s daughter, something of her mother lives
on in Ms. Tarleton’s new face. “I get to feel my mother’s skin again,
I get to see my mother’s freckles, and through you, I get to see my
mother live on,” the daughter, Marinda Righter, told Ms. Tarleton in
May. The two have kept in touch, and Ms. Tarleton said she could feel
Ms. Righter’s loss “so strongly” — another complicating factor as she
adjusts.

One Tuesday in August, Ms. Tarleton made her way yet again to Brigham
and Women’s, where doctors monitor the level of anti-rejection
medications in her blood and take biopsies of the skin on her neck —
which is the donor’s — to look for any sign of rejection.

Ms. Tarleton has undergone nearly 60 operations, mostly skin grafts,
at Brigham and Women’s and has visited 21 times since her latest
release in March. On this day she was exhausted, recovering from a bad
headache the previous night and a recent fall that had left her with
an aching foot. But she had a bit of good news for her doctors.

“If I put my head on Sheldon’s chest, I can feel his hair,” she said,
“and I couldn’t before.”

Ms. Tarleton also met with Bridget Bowler, a speech therapist who is
helping her learn to move her new lips — where nerve function
typically takes the longest to return in transplant recipients — and
practice facial expressions. She still has an air of the ventriloquist
when she speaks, a habit that Ms. Bowler is trying to help her shake.

“One of these days in the near future,” Ms. Tarleton said, “when I
start to cry or I laugh, you’re going to be able to tell by looking at
me how I feel.”

These days, Ms. Tarleton has returned to her hard-charging self. Her
summer included speaking engagements, weekend road trips and
late-night jam sessions with Mr. Stein and his musician friends. She
decided to take up the banjo in addition to the piano, because she
wanted to join in the jams. “Our whole lives,” she said, “are just
about experience.”

Ms. Blandin said Ms. Tarleton’s new face has helped mute the grief she
still feels about the horrible damage done by the lye attack. “Now I
just feel like a warm nostalgia: ‘I know you and I haven’t forgotten
you,’ ” she said of her sister’s original face. “She’s still Carmen in
some ways, but in other ways she’s someone new and the face transplant
represents that.”

But Ms. Tarleton’s daughters, Liza, 21, and Hannah, 19, who live with
her in a red barn that has been converted to apartments, on a hill
thick with wildflowers, were more matter-of-fact when discussing her
transformation, perhaps intentionally.

“"Mom’s going to do what she’s going to do,” Liza said.

Hannah chimed in. “And we’re going to get used to it,” she said, laughing.

“And we’re going to support it,” Liza added, “for sure.”

With that, Liza got up to make her mother a hot dog. Ms. Tarleton took
her spot on the couch, a barely perceptible smile flickering across
her face.