On a sunny morning last week, Forestgreen, just released from a
five-day stay at the Lakeshore General Hospital, sat before her computer
in the living room of her modest apartment near the Dorval airport.
The family's cat, Spirit, dog, Chance, and new kitten, Hope, were at
her feet and on the sofa to her right.
She was still weak and in pain. The drugs she takes for her condition,
lupus, or the disease itself, had burned the lining of her esophagus and
she had been unable to eat, drink or swallow medication for five days.
Forestgreen, 39, is a single mother, who has gradually become housebound
since being diagnosed with the chronic auto-immune disease four years ago.
She wears braces up to her thighs and her daily regimen includes more
than two dozen pills - steroids, anti-depressants and morphine. She is
plagued with pleurisy, infections of her heart's lining, bone degeneration,
constant fatigue and arthritis, all lupus-related.
Forestgreen has SLE - systemic lupus erythematosus - the most common
and serious form of lupus. Lupus is a chronic, auto-immune, inflammatory
disease that can affect any organ in the body and in a pattern that varies
greatly from person to person.
The problem stems from an immune system that cannot tell the difference
between the person's own tissues and foreign tissues. The name lupus comes
from the Latin word meaning wolf.
In Forestgreen's case, it has attacked her hips, knee joints and shoulders.
Her lungs, central nervous system and heart have also been affected. Looking
back now, she says, she can now see how the disease began its ravage in
her teen years and was behind the 11 knee surgeries she had throughout
her 20s .
The disease predominantly affects women of child-bearing age (15 to
45). In this age group, lupus is eight to 13 times more common in women
than in men. Estimates of the number of Canadians with lupus range from
15,000 to 50,000.
Forestgreen's marriage fell apart soon after her diagnosis with lupus
SLE in March 1994. Her medical condition continues to worsen and she supports
herself and two daughters Cindy, now 19, and Melanie, now 11, on welfare.
To pay for all her medications, she needs financial help from her elderly
parents, who live in Ontario. The days when she can do "mom stuff" - cooking,
cleaning, attending her kids activities - are few and far between.
But this story is not just about a debilitating disease. It shows how
the Internet, a communication tool often criticized and associated with
crazies, is also a lifeline. It's a story of how a hand-me-down computer
and $24.95 a month (an Internet connection) is keeping one housebound woman
connected with the world outside.
The E-mail that accumulated while Forestgreen has been in hospital is
bringing her comfort. She has lost many friends in the past four years,
those who offered comments like: "you're not well yet?" And she has had
to let her kids take care of her.
Today, they have filled the fridge with baby food, ice cream, popsicles
and milkshake drinks.
While, she was in hospital, her 11-year-old posted a notice on one of
her mother's lupus lists: "Kath is ill. . . . Send messages. I'll print
them out and take them to the hospital. . . . She's had some kind of allergic
reaction to morphine (one of mom's painkillers).
Forestgreen smiles: "As if these ladies don't know morphine."
Most of us take for granted, even try to avoid, the contact we have
with others over the course of a normal day: colleagues; neighbours; shopkeepers;
friends; and passers-by. Not Forestgreen.
She can get out of the house with the help of one of her daughters or
a friend. Or on a really good day, she can use her wheelchair and her 1987
Pontiac 6000 adapted with hand controls to get to the pharmacy or to see
her doctor, physiotherapist or rheumatologist.
But she is often too weak and in too much pain. It's also risky making
face to face contact with strangers, who could be carrying viruses. Her
immune system can't protect her.
The computer "has literally saved my life, more than once," Forestgreen
says of her cyberspace support team and the incredibly generous gesture
of a man named Jim and his family.
It was after 10 p.m. when the knock came at the door. Forestgreen wasn't
expecting anyone, and she opened the door to find Jim, a man she had only
communicated with on the Internet.
Knowing through electronic-mail communication that Forestgreeen was
on her own with two young daughters and that she was suffering a debilitating
lupus flare-up, Jim, a Vermont children's day-camp counselor, had driven
2 hours from his home in Essex Junction, Vt.
He found Forestgreen's two-bedroom Dorval apartment and packed up Forestgreen
and her girls so that he and his wife could look after them for a week.
"Whatever reason you're shut-in, the Internet can offer support," says
Sylvie Lauzon, a professor of nursing at the Universite de Montreal and
a researcher with the Centre of Excellence for Women's Health.
She has looked at how caregivers can use the Internet to access resources
and find emotional support - both proven aids to fighting illness. And
she would like to see the Internet used more by those in need of the health-care
system.
"Forestgreen" is her cyberspace alias, the name she took for herself
when she went online soon after being diagnosed with lupus. On the Net,
she began making friends with lupus patients all over the world.
She chose Forestgreen because it's her favourite colour and it symbolizes
the woods, a place she has loved since her childhood days as a Brownie
and Guide. It's also a safe place for her. Most lupus patients - Forestgreen,
included - are photosensitive. UV rays make them physically ill.
As Forestgreen, she can go anywhere and does. She navigates the Net
effortlessly - "it's really quite easy," she says - and she keeps up with
about 15 close friends she has met through online chats and lupus lists:
(http://www.hamline.edu/lupus), (http://www.acor.org/lupus) and (http://www.lupuscanada.org/).
"When you can hardly crawl out of bed, when you can hardly move, at
least, you can use the mouse," she said. "And, when you talk about pain,
they understand."
Most days, she spends four to five hours in front of her Pentium 166
and recently launched her own home page with links to 50 other lupus-related
sites. She constructed the site, music included, in three days using the
software package Netscape Navigator 4.
She will soon begin carrying the monthly bulletin of Lupus Quebec, a
non-profit resource and support group, which does not yet have a homepage
of its own.
"I've had 221 visits since March 16," she says proudly of the home page
she posted at the beginning of last month as a way to give back some of
the support she has found on the Net.
On any given day, she can receive more than 50 E-mail messages from
her lupus friends, updates on new studies and treatments, plus regular
mail from some of her cyberspace friends.
"Snail mail," as it is known on the Net, is for those days when you
need a little more to fight the "damned disease" and includes get-well
cards, birthday greetings, thinking-of-you mementos and spokles (tiny,
glittery hearts, happy faces and other cut-outs that fall from envelopes
once opened).
"The Internet has opened a world that didn't exist before," says Forestgreen.
"When you can't sleep at 5 a.m., someone is up in Australia or in England.
The Internet is open 24 hours a day, seven days a week There's always somebody
to talk to. You're connected."
If she is offline for too long, the phone starts ringing. "My address
book with Internet friends is twice as large as my regular one," she admits.
Jim, alias Akela and a fellow lupus sufferer, is just one of Kath's
Net friends. ("Akela" means head of the wolf pack.) There's also Barb in
Kentucky (Morning Glory), Nancy in Florida (Honeybee), Sue in Ohio (Snooz)
and many others Kath can count on. Their medical conditions and life circumstances
vary - but they all understand the disease and can offer a support non-lupus
sufferers can't.
On that fall evening in 1994 when Jim, a father of two, wound up on
her doorstep, two worlds - cyber and real - came together in a way that
surprised even Forestgreen. For a week, Jim and his wife opened their home,
took care of Kath and entertained her girls with activities.
But today, the love and caring she finds through her Net friends, no
longer surprises her. She relies on it. "They've pulled me back from the
brink a few times," she says.
She, like many others battling chronic illness, has lost friends and
fears burdening those who have stayed in her life. Instead, she confides
to her lupus friends on the Net - people who can't do anything for her,
physically.
The pattern, however, is not as futile as it might seem. "If they think
I need help, they start threatening to call my doctor, to call the hospital
. . . I get help then."
Index /Forestgreen
Living With Lupus//Montreal Gazette Story 1998/Montreal
Gazette Story 1999 /My Miracles/My
Photo Journey-My Many Faces of Lupus/My
Strength - My Family/ Comfort and Hope/Lupus
Support and Other Health Links