By Anne Federwisch, OTR
posted 11-6-95A lot has changed since Jim Lubin began exploring cyberspace 14 years ago. Then, the technology merely allowed him to run an electronic bulletin board with his computer, two floppy disks, and a 300-baud modem. Only computer professionals and enthusiasts were interested in communicating via computer.
The information highway has changed as more people have joined Lubin in cyberspace via the Internet and the World Wide Web. And Lubin's use of the computer has also changed from an interest to a necessity.
In a matter of hours on May 17, 1989, acute transverse myelitis left Lubin respirator-dependent and paralyzed below the second cervical vertebra (C2 level). Yet Lubin has not allowed quadriplegia to keep him from going on-line with his computer for up to nine hours a day. His Web site (which includes his disABILITY Resources on the Internet) has become popular with more than 100 people "visiting" Lubin and his page each day.
Lubin remembers only the beginning of that May 17. He awoke with a sore shoulder, and his mother, Helena Lubin, suggested he take the day off from his job as a supervisor in the assembly department of Heart Technology, a manufacturer of angioplasty equipment in Redmond, Wash. But Lubin did not want to stay home from a job he loved because of what he thought was only passing discomfort.
Within the first hour of work it became apparent that the sore shoulder was a symptom of a more serious problem. Lubin lost consciousness. His heart stopped. Paramedics from the fire station across the street from Heart Technology had to revive him several times.
When Helena Lubin arrived, the paramedics informed her that they did not think Jim would survive. "But I started calling to Jim, and he seemed to respond to my voice," she said. "Later, the doctors came right out and said the very fact that Jim lived is a miracle."
Jim Lubin spent the next 2 1/2 months in intensive care. Physicians initially suspected a cerebrovascular accident, Lyme disease, or an adverse reaction to chemicals used at his job. An MRI revealed acute transverse myelitis, an inflammation of the spinal cord, at the C2 level. Physicians theorize a viral infection reached Lubin's spinal cord through a minute crack in his spinal column that may have resulted from a fall from a tree as a child.
From August 1989 through January 1990 Lubin was in rehabilitation at the University of Washington Medical Center in Seattle. "Rehabilitation was kind of boring most of the time because I was a C2 quad--I couldn't do much," he said.
Lubin said therapy grew more interesting once he gained access to a computer. His regular occupational therapist called in Denis Anson, MS, OTR, a computer access specialist and lecturer in the division of occupational therapy in the University of Washington's department of rehabilitation medicine, to determine the best way for Lubin to use the computer.
Anson taught Lubin how to use Morse code with a sip-and-puff interface. Lubin gently inhales and exhales (sips and puffs) into an air switch connected to a computer. An adaptive device translates each sip into a dot in Morse code and each puff into a dash. The dots and dashes are translated into commands and letters on the computer screen.
Lubin mastered Morse code and the sip-and-puff technique in less than a month. A special valve (a Passy Muir tracheostomy speaking valve) lets air go into his trach but blocks it from going out, allowing him to speak and to sip and puff while on the respirator. "That way I have to exhale through my mouth and/or nose. Also I can hold my breath this way," Lubin said.
Lubin said that only a little air is needed to activate the sip-and-puff switches. "It's more just moving my tongue to change the pressure in my mouth. I just do very fast sips and puffs. I keep exhaling through my nose while I am typing."
Lubin now uses the sip-and-puff technique at home on his computer to access the Internet. Using an adaptive device called Adap2U, made by AdapTek Interface in Mercer Island, Wash., Lubin sips and puffs into an air switch to type into the computer.
Using the technique Lubin now can type 17 words a minute. He can keep up with almost everyone in on-line chat rooms, in which computer users "converse" by typing on their computer screens.
Lubin does much more than entertain himself with the computer. In exchange for his service provider account (his access to cyberspace), Lubin provides on-line support for GEnie (General Electric Network for Information Exchange). Via e-mail he answers users' questions for two to three hours a day. He also occasionally programs for his former employer, Heart Technology, in exchange for computer equipment.
In early 1994, Lubin began compiling information for his personal Web site so he could link to his favorite sites more easily. Eventually, he put his Web site on-line so others could access it. His current Web home page includes links he has set up to sites relating to astronomy, computers, geography, government, magazines, movies, music, news, shopping, and television. His most popular Web page is his disABILITY Resources, a compilation of resources of interest to people with disabilities and those who work with them. Among the resources are links to information about Social Security and the Americans with Disabilities Act.
"At first I just included sites I've found helpful," Lubin said. "Then people began writing to me and saying they had an interesting Web site, so I added those. They started saying they really appreciated my site, so I figured I should update it more often. The easier it is for people to find resources, the better it is."
The computer is Lubin's primary means of connecting with the world. Getting out of the house can be difficult: Lubin must make reservations two days in advance to use a public van that can accommodate his wheelchair. "I don't go out of the house much," he said. "But I'm very active on the computer. I can make good friends over the computer. I'm always helping people."
Lubin is one of an estimated 200,000 people with spinal cord injuries in the United States. And of the 16,024 people listed in the National Spinal Cord Injury Database, only 1.1 percent have impairment at the C2 level. Many people with quadriplegia use computerized controls to interact with their environments, performing tasks including turning on lights. Lubin takes that further by using his computer to interact with the world.
Helena Lubin is proud of her son and the way he helps people despite his paralysis. "Jim is a positive person, and he's always been that way," she said.
She said that physicians predicted a significant change in his condition in the seventh year after onset of the acute transverse myelitis. "From this year on, we should see changes," she said. "Jim is experiencing pain on his right side, but we don't know for sure if his condition will improve."
Jim Lubin is pleased to see others recognize the therapeutic potential of on-line computing for the physically impaired. A few years ago he advised the publishers of a spinal cord injury newsletter to put the publication on-line. "I had stopped reading it because it was a hassle," he said. "Someone [had to be] here that could turn it [the page]; I just didn't want to be a bother." Now that the publishers have followed Lubin's advice and put the newsletter on the Internet, Lubin can browse it independently.
Lubin's quadriplegia may severely limit his physical abilities, but he has no limitations in cyberspace. "[On the computer] people don't know I'm disabled unless I tell them," he said.
For more information: Contact Jim Lubin with any questions about his home page, using computers, or navigating the Internet.
You can contact us at Allied Healthweek, 1156 Aster Ave., Suite C, Sunnyvale, CA 94086; (800) 859-2091, fax (408) 249-8204, e-mail nurse@aimnet.com