Jim Lubin: An Inspiration and A Wealth of Information

“My name is Jim Lubin. I was diagnosed with acute transverse myelitis in 1989. I woke up the morning of May 17th with a sore neck on my right side. I thought I had just slept wrong, took a couple of Tylenol and went to work. About an hour later, I started feeling dizzy and the pain in my right shoulder increased. I lost feeling in my legs and couldn’t stand. I started losing my breath just as the paramedics got there. That is the last thing I remember until I woke up in the ICU; I couldn’t move and couldn’t speak. To make a long story short, I had an MRI several weeks later which showed a lesion at the C1/C2 level. I’m still paralyzed from the neck down and completely dependent on a ventilator to breathe. I can now feel everything except my right arm and have less feeling on my whole right side.” 

Jim posted this message on August 18, 1996 on the Transverse Myelitis Internet Club (TMIC). Jim started the club to provide a forum for people with transverse myelitis and their families and friends to exchange information, offer emotional support and share  perspectives on their experiences. For those of us who have access to the Internet and have been searching for information on transverse myelitis, Jim has become an inspiration and a source of a great deal of valuable information about transverse myelitis and about disability.

In addition to the TMIC, Jim has developed and maintains an Internet site he has named the disABILITY Information and Resources page. He has constructed the site with numerous links to disability topics all over the Internet. The site has compiled links to such topics as disability-related products and services, spinal cord injury resources, government and legislative information, social security information, legal information on disability issues, medical related newsletters and publications, medical newsgroups, disabilities organizations, disability resources relating to recreation, travel, sports training and athletic competition, university-based disability information, and information pertaining to the Americans with Disabilities Act. Jim has also compiled links to information about transverse myelitis. The disABILITY Information and Resources page includes the equivalent of five pages of links which literally transport an information seeker all over the Internet. Jim’s experience and expertise with computers and software are quite obvious and impressive from what he has accomplished on the Internet.

What is less obvious and more remarkable is how Jim performs these tasks. Jim uses 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 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. Lubin now uses the sip-and-puff technique at home on his computer to access the Internet by typing into the computer. Using the technique, Lubin now can type 17 words a minute.

Jim has graciously offered to assist our organization by establishing us a presence on the Internet. We are in the process of preparing materials that Jim will develop into a homepage. This site will be available to anyone with access to the Internet. Jim will be maintaining the site for us. This homepage will assist us in reaching more people with transverse myelitis, and their families and loved ones. We are very excited and grateful to have Jim’s considerable talents be made available to our cause.