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Archive of Past
IN OUR OWN WORDS
With the knowledge that I have a recognizable, treatable disorder, and that there are others like me, that exuberant little person who lives in my heart is waking back up after having been asleep for a long time.
IN OUR OWN WORDS
Publisher 97 helps Larry Craig reach out
to fellow Dystonics
"It took three years to get a diagnosis," Larry Craig says. "When I heard, I cried. I finally had a name for what was wrong with me." The diagnosis was Dystonia, a neurological disorder so rare and so varied in its symptoms that victims are often mis-diagnosed or, worse yet, told that their troubles are all in their heads. Since there's no cure for the condition, which is progressive, the relief at identifying it can be short-lived.
"You can feel sorry for yourself," says Larry. "Or you can help others." Larry Craig chose to help.
Dystonia is an illness dominated by involuntary spasms and muscle contractions that induce abnormal movements and postures. Such spasms may affect one part of the body, or the whole body.He started with an Internet search on the refurbished 286 his brother Glen had passed on to him. Weeks of research turned up too little information about Dystonia, but it did connect Larry, who lives in Montreal, with two fellow sufferers: David Barton, of New Zealand, and Texan Anne Brett.
In April of 1996, Larry, Anne, and David "met" live for the first time, and the Dystonia On-Line Chat Group was born. Today the group convenes twice weekly on the Undernet, hosting as many as 450 participants from all over the world. Sharing laughter and frustration, comparing notes on treatment, they speak the common language of their disease.
The Dystonia Web site, Larry says, was a natural progression from the chats. One day, looking to download a power toy, he found a trial version of Microsoft® Publisher 97 and decided to check it out. "I was flabbergasted," Larry recalls. "Publisher practically does the work for you. In just a couple of hours, I'd created my first Web site."
After Larry built it, people came - 12,000 visitors in the first month, according to his ISP. The Dystonia site collects and makes accessible every Dystonia link in cyberspace. More important, it's become Communication Central for all those whose lives are touched by the disease.
Doctors from all over the world visit the site to share clinical and anecdotal information that will help them recognize and treat Dystonia. The friends and families of Dystonics learn what to expect and how best to support their loved ones. And in a section called IN OUR OWN WORDS, Larry posts the e-mail he receives from his Dystonic fellow travelers.
"It's such powerful reading, it takes me the longest time to type it in," Larry says. "I often have to stop and cry." Over and over, the letters talk about the impact of encountering fellow sufferers, of having one's own experience, so often painful and surreal, validated, of spirits rising as one learns that one is not alone.
In fact, visiting the Web site feels like dropping into an especially warm and joyous reunion of extended family.
Larry spends a couple of hours each week on site maintenance and updates, scanning in photos of regular visitors, compiling a calendar of birthdays, and adding new links. From Texas, Anne Brett authors a second Dystonia Web site, also using Publisher 97. Here Anne posts and annotates the latest medical writings about the disease.
Within a few months, French and Spanish editions of the sites should be online.
None of which means that Larry Craig's work is done.
If getting first wired, then Web-savvy didn't save Larry's life, it surely did a lot to make it worth living. That's a favor he's committed to passing on. Within a few weeks, he'll be certified as a computer technician, with the skills he needs to make other people's cast-off computers into lifelines for the handicapped.
"Collect computers, rebuild them, and give them away," Larry says. "That's my dream." Internet accessibility, he believes, may be the most important kind.
Visit Larry Craig's Dystonia Chat Support Group Website.
See the Dystonia Web site maintained by Anne Brett.
Download a free trial version of Publisher 97.
Learn about Office 97 Small Business Edition, of which Publisher 97 is part.