HIV+ Teen Starts Online Support group – 1996

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Providence Journal – Bulletin – Providence, R.I.
Author: TIMOTHY C. BARMANN
Date: Jan 21, 1996
Text Word Count: 936
HIV

Fourteen-year-old Ryan Gralinski has lots of friends – but none are quite like him.

In most respects, the Coventry boy is like a typical teenager trying to navigate the endless limbo of adolescence. He has sleep-overs with friends, he likes toski, and he occasionally argues with his twin brother. And he loves to play with computers.

But Ryan faces an uncertain future. You may recall front-page articles about him last year after he mustered the courage to stand in front of a hundred faces- his fellow eighth-graders at Coventry Middle School – and tell them he has HIV – the virus that causes AIDS.

Ryan got the virus from a blood transfusion the day after his birth, but he and his parents didn’t learn of his condition until lastyear.

Coventry residents reacted with sympathy, and Ryan said he’s in good health and remains surrounded by friends who, for the most part, treat him no differently than before he “went public.”

And his mother, Terri, said she is pleased with theparents of his friends, who have been really supportive.

Still, something is missing for Ryan: He’d like share experiences with other teens who have HIV, who might know what he’s going through. But there aren’t many around. So he’s turning to hiscomputer for help.

Last July, Ryan started his own one-line electronic bulletin board, and is one of the youngest “system operators” in Rhode Island.

And in hopes of reaching out to other HIV-positive teens, last month Ryan proposed starting aTeen-AIDS discussion group on a worldwide amateur computer network called FidoNet.

He wrote: “I am an HIV+ 14 year old who contracted the virus through a blood transfusion the day after i was born! and i am trying to start a mail echo calledTEEN-AIDS for teenagers to talk about Aids/HIV separate from AIDS-HIV which is mostly older or gay people! If anybody would be interested in carrying this echo please Email me. . . . Thanks in advance!”

To start a new discussion group, at least twoother computer users must show interest. Late last month, after his proposal was published in the FidoNet electronic newsletter, Ryan checked a status report. He found that not just two users were interested, but 19 were. He then receivedconfirmation by e-mail that his discussion group would be carried over the network.

“I was just like, ‘Cool,’ ” Ryan said recalling his reaction.’A very painful thing’

Ryan’s interest in computers started in third grade, when his parents bought one for their house. By fifth grade, he had his own computer and used it to play games and call bulletin board systems.

His mother said she thinks it is through hiscomputer that Ryan is learning how to cope with his medical condition.

“It’s a very painful thing for all of us,” she said. “By him using the computer, he’s able to deal with it his way, without involving the rest of us. . . . It’s very painful totalk about it to him.

“He feels he’s protecting us by not discussing it with us, by contacting a lot of people that are in his medical situation.”

Is it upsetting that he turns to strangers for help?

Not at all, she said. “We like the fact that heknows how to go and get support that he feels comfortable with,” she said.

Ryan has made several adult friends on line, but has never met them in person because they have lived too far away.

He recently took a skiing trip with another Coventryteenager (who doesn’t have HIV) whom he met on the computer as well.Tutored at home

Ryan no longer attends his middle school – he “just wasn’t motivated,” he says. He prefers his tutor, who comes to his house three times a week. He still hangs around his old school friends, he said.

He said he would like to pursue a career withcomputers, and he hopes the Community College of Rhode Island will allow him to take a college-level computer programming course this spring.

When Ryan isn’t studying, there’s a good chance you’ll find him tapping away at his keyboard.

“We teasehim,” said his mother Terri. “We tell him we’re going to forget what he looks like.”

As for the Teen-AIDS discussion group, Ryan is just getting it off the ground and as of this writing, there weren’t any messages posted in it.

But Ryan said he’shopeful that will change pretty soon. He’s checking his discussion group for new mail every day.

To read or contribute to the Teen-AIDS discussion group, you must call a FidoNet-affiliated bulletin board. There are several in Rhode Island. For acomplete list, send a self-addressed stamped envelope to RIBBS, 20 Newman Ave., Johnston, R.I. 02919. Once you are connected to a FidoNet BBS, look under the section called “echos” or “messages.” If the Teen-AIDS echo is not listed on the board youcall, you can request it from the system operator.Computer calendar

Feb. 10 – Intelecom Data Systems (IDS), an East Greenwich Internet provider that offers access to much of the state, is holding a free World Wide Web “hands-on” workshop. The class will be held from 9 a.m. to noon and will cover Web basics and alsohow to make your own home page. Space is limited. To register, call IDS at 885-6855 by Feb. 6.

Timothy C. Barmann is a Journal-Bulletin staff photographer. His column runs every other Sunday on the On Line page. Send him comments via e-mail at tim@@ids.net or U.S. mail, c/o the Journal-Bulletin, 75 Fountain St., Providence, Rhode Island02902. Visit the Cybertalk home page

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