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Fight rare neuro-immune disorders. Together.
On May 17, 1989, I became paralyzed from the neck down and dependent on a ventilator to breathe due to Transverse Myelitis. I was 21 years old.
I woke up with pain in my shoulder. I went to work and about 30 minutes later, the pain got very intense. I suddenly could not stand and then stopped breathing. I later found out that my heart stopped and it took a while for them to stabilize me to even transport me to the hospital a few blocks away. The doctors had no idea what had happened to me. Their initial thought was possibly a stroke, Lyme disease, or Guillain-Barré Syndrome. I was in and out during that time, could not talk, and only have vague memories of my onset. After about two weeks, I had an MRI and was given the diagnoses of Acute Transverse Myelitis at the C2 level.
I was in the ICU until July 31st and then transferred to a rehabilitation unit. In rehab, I was treated as a person with a spinal cord injury. I had physical therapy which consisted of giving me range of motion and practice driving my sip and puff operated wheelchair. In speech therapy and occupational therapy, I learned Morse code to access the computer. I practiced typing and played Tetris and chess. In October, I was able to leave the hospital for the first time and went to see the Batman movie. I started going to movies about once a week. The nurses always tried to get the other patients to go out when I went, because I was the only vent dependent high level quadriplegic who enjoyed going out. Most of the others were paraplegics, and having problems dealing with their condition. I was in rehab until January 31, 1990.
When I came home from the hospital in 1990 and got back online, I searched all the online services I was on (GEnie, Compuserve, Delphi) for any information on Transverse Myelitis. I didn’t find anything. When I first got Internet access in 1991 using a friend’s university account, I found a few messages from people asking questions about it. I later got on Prodigy and AOL. In 1994, I put together my “disAbility Information and Resources” website, gathering whatever information I came across on spinal cord injury and other resources.
I started emailing one person with TM. He thought it would be neat to have a “Transverse Myelitis Internet Club” so we could communicate with others. When my internet service made email list group an option, I started one for quadriplegics and one for vent-users. I started the tmic-list a few months later and sent a message to the ten or so people I had come across who had mentioned or asked about transverse myelitis. That’s how the list started.
In 1997, I offered to make a web site for The Transverse Myelitis Association. We still didn’t have much information at that time, but it helped people around the world find us. In 1998, New Mobility magazine named me their “Person of the Year”. That was mostly because of the emails they received from all the people on the tmic-list.
In 2008, The Transverse Myelitis Association honored me by starting the James T. Lubin Clinician-Scientist Fellowship award to support the post-residency training of clinicians and scientists committed to careers in academic medicine specializing in rare neuro-immune disorders of the Central Nervous System.
Being dependent on a ventilator to breathe for me, I consider every day a blessing to still be alive all these years. I am so grateful I have been able to watch my niece grow-up. My hope is to remain healthy and have a positive effect on the world around me.
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