Life Support by Email
An article from the online magazine PreText, Dec. 97.
http://www.pretext.com/
By Dominic Gates

Samantha Jane Scolamiero had a brain
tumor removed in 1990, when she was
20. Afterwards, though her thinking
was unimpaired, her brain could take
in only limited amounts of sensory
stimulation at one time; and she had
problems with vision and balance. She
also faced inadequate follow-up care.
"I had to fight, yell, kick, and
scream to get rehab at all," she
recalls. Officially labeled "cured"
after her surgery, she was refused
admission to a support group near her
home in Boston, Massachusetts. The
group was exclusively for people
coping with malignant growths, not
benign tumors like hers. She found
another group 45 minutes away by car,
but she was in no state to drive.

In 1993 Scolamiero started her own
virtual support group via an Internet
mailing list. Today that list,
BRAINTMR, is a lifeline for 1200
members in over 30 countries, many of
whom would otherwise languish in
isolation. And Scolamiero has been
transformed into a militant patient
advocate and an eloquent promoter of
the value of the Internet.

It is easy to be cynical about
Internet hype when TV ads divorced
from the realities of the world
promote globe-spanning visions of
goatherds in the Gobi desert
brandishing laptops. Though online
medical special interest groups occupy
an unglamorous corner of the Internet,
they are better illustrations of
cyberspace buzzwords than anything in
those ads. And while the medical
industry has a glossy and expensively
produced presence on the Web, it's the
networking of these support groups
through basic e-mail that has emerged
as the Internet's most important
health-care application.

Driven By Love

Mailing-list-based groups such as
BRAINTMR are virtual communities of
individuals and families struck by
chronic, sometimes terminal disease.
At times the messages exchanged may
not be much more than banter between
friends who've become close through
sharing trauma. But the purpose of the
group is never far out of mind.
"People can be sitting around joking
about their brain tumors," says
Scolamiero, "then someone new comes on
and types 'I'm sitting here crying at
my computer.'"

These virtual communities are often
volunteer-run, controlled not by the
health industry nor by medical
professionals, but by patients. Driven
by love, not money, they offer both
solid practical information and
emotional support. Doctors sometimes
participate, as much to learn as to
answer queries. The benefits are
profound: knowledge, empowerment,
strength, peace, and sometimes life
itself. "I doubt that what I say will
come close to expressing the gratitude
which I feel," wrote one BRAINTMR
subscriber to the list, "My sister
would be dead today if it had not been
for this support group."

Perhaps because we all find it easier
not to think too much about illness
and death, many become aware of the
existence of online support groups
only after something terrible happens.
When Angela Sissons's breast cancer
recurred 12 years after successful
treatment of an initial occurrence,
Sissons, of Los Angeles, California,
went to the Health and Fitness
sections of America Online looking for
research material and information. "I
didn't think about online support
groups even existing," she says. But
soon a member of one group--who
affectionately call themselves The
Cybersisters--found her, and now she
talks regularly online with other
women in various stages of the
disease. "They have been extremely
helpful to me," says Sissons, whose
prognosis is poor. "There's something
comforting about talking to persons
you have never seen in person, because
there's some anonymity with the
computer, and it allows me to be very
frank, very honest, and very open to
suggestions, and woman-to-woman
advice."

Better Than Face-to-Face

Surprisingly, the element of distance
in communication is often cited as a
positive feature that makes online
groups superior to face-to-face
support groups. Recently Diana Dills
of Seattle, Washington, was diagnosed
with melanoma, an often fatal form of
skin cancer. Although she has a strong
base of friends around her, Dills
decided not to tell them. "If you go
to friends there's an emotional impact
on the people around you, and you have
to deal with that too," she explained,
"Online there are people going through
the same thing; but there's a detached
perspective. It's better than sitting
down with your best friends and laying
this huge thing on them." So Dills
dealt with it herself, with online
support, and only after her successful
surgery broke the news to friends. By
then she could reassure them, "It's
cool; I'm probably not going to die
from this."

Pam Honsinger, whose husband is now in
remission from Hodgkin's disease, a
cancer of the lymphatic system,
remarks that a local face-to-face
group may not have people of the same
age or same predicament, and may
therefore be of limited help. In her
case, the local support group for
caregivers like herself was just
impractical. "I had back problems, a
baby, a sick husband; plus the group
is only available certain times. I
couldn't go," she says, "Compare that
to the Internet: you can sit in your
pajamas with a cup of tea at home with
your family. Hands down, online is an
absolute godsend."

Online connections have the strongest
benefits for people who suffer from
relatively rare diseases or who live
in isolated areas away from major
hospitals. Honsinger had never even
heard of Hodgkin's disease when her
husband was diagnosed. Now she says of
her online group, "The Listserv saved
me . . . those folks have seen us
through more crises." Similarly,
parents newly devastated by the
diagnosis of spina bifida in a child
may connect online with a whole
community of people who have been
dealing with the disease for years.
Eve Clyne from England, whose
12-year-old daughter Joanna has spina
bifida, praises the
alt.support.spina-bifida mailing list,
and points out that "the fact that the
list is for those expecting a baby
through to adults with spina bifida
means that you can have a very wide
spectrum of advice." Lisa Coles in
Australia is due soon to deliver a
baby with spina bifida. "The only
reason that we are still sane," she
writes "is because we have been able
to talk to other parents and people
with spina bifida via e-mail."

Not Just Feel-Good Groups

Newcomers to the online world often
discover mailing list groups through
newsgroups. Newsgroups like
alt.support.cancer are an open forum
for questions. Although such
unmoderated newsgroups can be at times
frustratingly burdened with junk mail,
the pushing of quack cures, and purely
pointless messages, they also
facilitate replies to factual queries
and provide information on more
specialized and more private
e-mail-list-based groups.

But these lists are not just feel-good
groups: they are also sources of hard
facts. Dills, who sought emotional
support during her fight with
melanoma, discovered this in her
earlier struggle with diabetes.
Diagnosed four years ago, Dills found
practical information in online
diabetes support groups that she could
not find elsewhere. Diabetes is a
chronic condition without a cure but
amenable to control. Uncontrolled, it
can lead to serious complications,
including blindness, kidney failure,
and the need for limb amputation. The
treatment for the form of diabetes
that Dills suffers involves monitoring
blood sugar levels and controlling her
diet. After two years of standard
treatment with her doctors left her
debilitated, Dills read on the mailing
list about a low carbohydrate diet,
which seemed applicable to her
physically active lifestyle. She tried
it and her health improved
dramatically. Her diabetes has been
under control ever since. Dills was
understandably annoyed to find that
this was a well documented regimen;
doctors, she says, frequently discount
the option because the amount of diet
control required is beyond the
capabilities of many patients.

Now Dills, like Scolamiero, is the
epitome of the informed patient,
determined to understand all aspects
of the disease and to take as much
control of her health as possible. For
people who would otherwise lack the
necessary information, online support
can put this ideal within reach.

When Online Communities Fail

And yet, there are some limitations to
this form of communication. In one of
her Web pages Scolamiero remarks that
computers "are really mere extensions
of ourselves." Though it can bridge
barriers of distance and time,
information technology cannot entirely
transcend the limitations of human
frailty. Dills believes that lists
which grow too large inevitably lose
focus. She gets impatient when lists
begin to diverge from the subject, and
more so when individual postings lead
it astray. She has a saying on her
refrigerator door: 'There is no cause
so noble that it won't soon be joined
by a complete horse's ass.' "Having a
terminal disease," she contends,
"doesn't excuse you for being a
horse's ass."

Angela Sissons, of the Cybersisters
breast cancer group, once tried a
different online support community,
only to find "a closed group who
talked in jargon and laconic terse
sentences about their own stuff and
who did not seem to be open to anyone
but themselves." In fact such
disappointments are common; some
groups grow insular and are hard for
newcomers to penetrate. Others go
through a turbulent history where one
member of the list manages to upset a
lot of people and everyone grows wary
afterward. Like real communities,
online communities go through cycles.
Some fade into silence. New ones grow
up independently. Anyone in need of
support should be discerning in
evaluating a group. As with any type
of online community, one should simply
hang out for a while and see what is
going on before posting.

Even Scolamiero has had moments of
doubt about her idealistic enterprise.
"When I began I thought truth and
goodness would prevail," she says.
Then for a period she grew worried
about privacy issues. What did it mean
that everyone knew about her brain
tumor? Could it affect her future job
prospects, her life insurance? What
effect would it have on a kid to
realize his parents talked about his
medical condition all over the Net?

Then at a conference, a health
insurance executive approached her
about the possibility of his company
getting involved in her list.
Scolamiero, who strongly holds that
communities like the one she has
created must remain in the hands of
patients, had a gut reaction. (Note
that at least one health industry Web
site has set up a number of free
online support groups that require
members to fill in a detailed
registration form--the information
provided to be used for "market
research.") "Here they are," she
thought at the time, "taking the stuff
we've been doing out of our hearts,
and now they're going to sell it."

Though Scolamiero drew back for a
while, BRAINTMR parents reassured her
that the advantages of online sharing
are more powerful than any danger. "I
regained my courage," she says "I'm
back out there telling my story."
She's formed a new foundation, The
Healing Exchange Brain Trust, and is
currently trying to raise money so
that the BRAINTMR list can be split up
into more manageable and more useful
specialty areas--excluding no one with
a tumor, malignant or benign. She also
wants to add a bulletin board and chat
rooms. Asked if she again believes
that truth and goodness will prevail,
Scolamiero laughs long, and says yes.

(C) 1997, PreText, Inc.


----------------------------------------------------
Bruce Wallace   Technical Writer   Sydney, Australia
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