by Dwight Wayne Coop
More people have seen ‘Gone
with the Wind’ than any
other movie; an ageless film,
it still occasionally pops up
in Guatemalan cinemas. On that basis,
Vivian Leigh (Scarlett O’Hara) is probably
the most famous person ever carried
off with the hacking wind of tuberculosis,
which took her at 54. Impoverished Central
Americans suffering from what used
to be called “consumption” might take
comfort in knowing this, since both Vivian
and Scarlett were well-bred aristocrats who
braved sickness without shame.
Entrance to the Hospital Nacional Rodolfo Robles
But by the mid ’80s TB was back with
mutative force, claiming victims even in the
affluent societies of North America. But in
Guatemala it never retreated from sowing
the lungs of campesinos with its little
wriggly tubercles. But now another sowing
— one of hope — is under way against both
the disease and its ancillary consequences.
The garden is Quetzaltenango’s Rodolfo
Robles Hospital, which for over 70 years
has served TB patients of the Guatemalan
Occident. This hospital became a literal
garden when in 2001 volunteers took up its
cause and planted flowers on the premises,
bringing not just light but color into the
lives of the suffering. When it came time to
pick a name for their foundation, someone
looked out the window at those flowers and
suggested Seeds of Hope.
Tuberculosis, lethal as it is, can be treated
easily and affordably if a public health
infrastructure is in place; Guatemala has
made a start, but progress is slow. Often TB
is not even recognized —much less treated
—according to Seeds of Hope’s youthful
founder, Canadian social worker Sarah
Gough. “Reports of people wasting away
and coughing up blood,” she said, “are suggestive
of undiagnosed TB.” Tuberculosis is
hardly on its death bed; worldwide, it still
puts at least two million people in theirs.
The fortunate ones — some from as far
away as the coast or even southern Mexico
— make it to Robles, where treatment
and food are free. But hospitalization has
other costs, and Seeds has found ways to
pay them. But the focus is prevention; it
is, according to the mission statement, “to
decrease the number of patients at Robles
who prematurely abandon their treatment
only to infect their communities with multidrug resistant tuberculosis (MDR-TB).”
Keeping patients active is
a key part of the program
As well, many are infected with latent TB.
“Given the right circumstances” explains
Gough, “weak defenses caused by malnutrition,
cancer, diabetes, infected people
can fall ill and begin infecting others unless
they get immediate treatment.” AIDS
— which opens the door wider for TB than
any other circumstance — is the fastestgrowing
factor. Many patients at Robles,
like Carolina, 32, have both diseases.
“I was terribly depressed, sad and alone,
and I couldn’t help my kids,” she says of
her stay, now in its eighth month. “I’m
desperate to leave here because my eldest
son, who is only 11, has no choice but to
start working.”
Seeds of Hope helps Carolina and others
like her through its Robles-based programs.
Since most patients are poor and from rural
areas, their families lack the means to call or
visit, compounding the patients’ isolation.
Depression, economic strain, alcoholism
and addiction are the commonest reasons
patients leave Robles before finishing their
TB treatment. Not only do they leave still
sick, but by this time they are carriers of MDR-TB, the mutation that results
from
incomplete treatment. This is the airborne
killer they take home with them.
Each of Seeds’ four programs helps patients
to complete the duration. One, Social
Work, evaluates, discharges and educates
inpatients to be responsible outpatients at
their puestos de salud. Another program,
Patient Emergency Fund, helps with needs
such as paying for tests or treatments the
hospital cannot provide, the journey home
or a call to the teléfono comunitario in
their home village.
“This fund,” Gough says, “recently helped
us pay for blood tests a patient needed
before surgery could proceed. Without it,
the patient might’ve died.”
In order not to exhaust the fund, all but the most destitute
patients pay what they can to cover these extra costs. But a percentage of the
fund’s money comes from the industry of a third Seeds program, Hands in
Action. Begun in early 2003, Hands enables patients to earn money while hospitalized;
at any one time, 30 to 50 are involved, making up to Q400 a week. Ricardo, 28,
who has six children, earned enough to pay for all his medical tests outside
the hospital. “My family
was already struggling with me being sick,” he says, “but thanks
to Manos I didn’t have to ask them
for more money.”
How does Hands in Action work? A volunteer — often a
foreigner at a Xelajú (Quetzaltenango)
Spanish school — buys the materials for the patient, teaches him or her
a craft, then puts the finished
product up for sale at the schools and cafés. Patients not only enjoy
the work but the therapeutic
senses of accomplishment, comradery and self-esteem that come from knowing that
part of
their labor supports the emergency fund.
Seeds’ fourth program, Activities, is even more directly
therapeutic. Its goal, says Gough, “is to
stimulate recovery by alleviating depression, loneliness and boredom.”
The activities, lasting an hour
or two, include soccer matches in the hospital basketball court, movies and
celebrations of holidays
and festivals — all with participation by volunteers and hospital staff.
Once, a volunteer donated a
guitar; those who followed him used it to give informal concerts at the hospital.
More than other
diseases —excepting its frequent traveler, AIDS —TB requires such
therapies because the regimen
of heavy antibiotics and light quarantine is so long. The cure has been around
since the 1950s, but
the typical in-patient stay is three months —followed by additional months
of outpatient treatment.
Cutting back on any of this is an invitation to the pernicious mutant: MDR tuberculosis.
Seeds’ programs would falter without donations of money and time. Founder/Director
Gough got
her own start while volunteering at Rodolfo Robles in June of 2002. “It
didn’t take long,” she says,
“to realize more was needed to make a difference in the lives of TB patients
coming to Robles. That’s
why we came up with the series of programs.”
Patient Miguel, 32, is understandably grateful, especially
for the Activities program. “Time is different
in a hospital,” he says. “A day here can feel like a week. A treatment
sentence of seven months,
like mine, could feel like a lifetime.” •
To learn more about SOH, call (502) 634-3147 or go to: www.members.shaw.ca/seedsofhope
