ABLEnews Extra

                    Forced Into the Shadows

          [The following file may be freq'd as HOS50406.*
          from 1:275/14; and other BBSs that carry the
          ABLEFiles Distribution Network (AFDN) and ftp'd
          from ftp.icdi.wvu.edu on theInternet. Please
          allow a few days for processing.]

For 24 years, Nancy Batista lived isolated from just about everyone in
America, housed behind a barbed wire fence in Carville, La., at the
only leprosy hospital in the continental United States.
   
When she left a dozen years ago, she had hoped to spend the rest of
her life among family and friends in San Francisco. But yesterday,
Batista climbed aboard a jetliner with a one-way ticket back to
Carville.
   
With her vision failing, her heart weakened and her hands and feet
damaged and disfigured because of her disease, Batista believes her
trip to Louisiana marks the final stage of an odyssey that began in
the Philippines more than half a century ago.
   
As she prepared the other day for her return to Carville, she spoke of
her years living in the shadow of a dreaded disease.
   
"I am tough," she said with a wry smile. "To be able to live, I have
to be tough."
   
For years, Batista had received treatment for her leprosy at a
federally funded clinic in San Francisco. But in January, the
government shut the clinic down and said its 650 patients could get
limited services in Martinez. Unhappy with that option, Batista made
the hardest decision she has faced in her 66 years.
   
"At least they have doctors at Carville," she said. "At least they
have medication."
   
It was during World War II that Batista somehow contracted leprosy.
She was the daughter of an American soldier stationed in the
Philippines, and when the Japanese invaded Manila, she fled with her
Filipino mother and sisters into the countryside.
   
In the years since the war, she twice escaped locked Manila medical
wards; she lived the life of a merchant mariner's wife in San
Francisco; she was quarantined at Carville; and she finally found a
quiet independence in the city she loves.
   
Like most victims of Hansen's Disease--the polite term for
leprosy--Batista is not infectious. Her illness is completely under
the control of powerful antibiotics. But like most Hansen's
sufferers--there are an estimated 6,000 in the United States--she
has kept her condition a secret from all but a few family members.
   
"I am not proud of this disease, but I am not ashamed of it either,"
said Batista, who wanted to reveal her condition before she left. "It
has always hurt to lie."
   
Although her leprosy is not contagious, she knows that fear can be.
Neighbors or nieces would ask about her hands. "Arthritis," she
would tell them. It was better for her that people did not know.
   
Leprosy has crumpled the bridge of her nose, claimed one of her
fingers and a toe, but has left untouched her compassionate nature,
her combative spirit, her sense of humor. "Some people say I have had
bad luck," she said. "But as my mother says, `The people who have
bad luck are six feet underground.'"
   
God gives everyone a cross to bear, Batista said. "I have been
blessed with sense of humor, so that I can carry it."
   
In the San Francisco flat she left yesterday for the last time,
Batista had stocked a wall-length bookshelf with a variety of
medications, bandages and ointments. She takes the antibiotic Dapsone
to suppress the leprosy bacteria. To control pain from damaged nerves,
she takes Thalidomide, a drug that caused catastrophic birth defects
in the babies of women who took it while pregnant 30 years ago and is
now being tested as a treatment for ailments as disparate as leprosy
and AIDS.
   
The bacteria that cause leprosy do not directly damage the skin and
bones, but kill nerves serving the extremities and the eyes.
Susceptible to burns, scaldings and untreated infections, people with
advanced cases develop gnarled hands and feet from a lifetime of
injuries.
   
Because her disease went untreated until she entered Carville in 1961,
Batista suffers much more than most Americans with leprosy today. She
has no feeling in her hands and feet. Since the 1960s, she has endured
more than 50 corrective surgeries.
   
Batista decided to return to Carville only after leading an
unsuccessful battle by San Francisco patients to keep their clinic
open. Living on $634 a month disability income, she said she cannot
afford the medications she needs for her eyes, her heart and her
Hansen's disease.
   
Those who were detained at Louisiana's Gillis W. Long Hansen's Disease
Center against their will have the right to lifetime care at the
100-year-old facility, which was built on an abandoned sugar
plantation 75 miles up the Mississippi River from New Orleans. For
Batista, it is a last refuge, a place where she can play poker again
with people who will not stare at her hands.
   
"Carville is beautiful, if you like institutions," said Batista. "They
made my life comfortable, but you are not free. You have to abide by
the rules."
   
Today, the 300-acre campus is home to about 130 Hansen's patients,
most of whom have lived there all their lives. They can come and go as
they please--involuntary commitments are a thing of the past. Carville
operates primarily as a nursing home. The average age of residents is
just under 70.
   
"I will miss San Francisco," said Batista, with a trace of tears in
her eyes.
   
She leaves behind an extended family of Filipino Americans, including
her 87-year-old mother, two sisters and 11 nieces and nephews. She
also is leaving her two shaggy-haired dogs, Samson and Delilah, who
lavish her with uncritical affection.
   
"They're just mutts," she said. "But they are good. They are my
companions."
   
Batista said she will miss the wonderful diversity of San Francisco,
the hills, the weather, the chance to walk down the street and enjoy a
bowl of won ton soup. She has turned down the entreaties of her family
to stay. "My main concern," she said, "is my health."

[A Life Changed as Leprosy Clinic Closes, Sabin Russell, San Francisco
Chronicle, April 6, 1995]

     Brought to you as a public service by ABLEnews. A
     Fidonet-backbone echo featuring disability/medical       
     news and information, ABLEnews is carried by more than       
     500 BBSs in the  US, Canada, Australia, Great Britain,     
     Greece, New Zealand, and Sweden. Available from Fidonet      
     and Planet Connect, ABLEnews is gated to the ADANet,       
     FamilyNet, and World Message Exchange networks.      
     (Additional gating welcome on request.)
                                     
     ABLEnews text files--including our digests Of Note and
     MedNotes (suitable for bulletin use) are disseminated via
     the ABLEFile Distribution Network, available from the
     filebone, Planet Connect, and ftp.icdi.wvu.edu.

...For further information, contact CURE, 812 Stephen St., Berkeley
Springs, WV 25411. 304-258-LIFE/258-5433 (CUREltd@ix.netcom.com)