Eric sees the beauty of technology

Eric Wan (above right) has lived a life few can imagine. At 18 he was a healthy high-school student who excelled at computers and violin. Three days after a routine measles vaccination he was rushed to hospital unable to move and struggling to breathe. For four months he laid in intensive care, where he was diagnosed with transverse myelitis, an inflammation of the spinal cord. He was paralyzed from the shoulders down and needed a ventilator to breathe. The only possible cause doctors could point to was the measles shot. He was transferred to a long-term care hospital for two years of rehab.

Last month Eric graduated with a computer-engineering degree from the University of Toronto after winning an award for his thesis. Since 2005 he's been developing technologies for children with disabilities as part of his training at Holland Bloorview. He starts graduate school on scholarship in the fall. “He’s among the very best software developers I have ever encountered,” says Tom Chau, Canada Research Chair in pediatric rehab engineering and Eric’s thesis advisor (in photo left). I was delighted that Eric agreed to talk with me.

BLOOM: What was your life like before you became paralyzed?

Eric Wan: I lived a very regular life, just like any other teenager. I loved computers and spent a lot of time practising violin and playing in my school’s symphony orchestra.

BLOOM: What was most challenging about acquiring significant disabilities as a teenager?

Eric Wan: There was no challenge initially because I didn’t think of myself as being paralyzed for life. I thought I would get better, or there would be some kind of cure. For the four months I was lying in bed in the ICU, my main thought was of boredom. It wasn’t until I got to West Park for two years of long-term rehab that I realized the paralysis would be for life. In fact, when I first arrived, the staff thought I might stay in their facility for life.

BLOOM: What happened when you realized you wouldn’t get your mobility back?

Eric Wan: I had periods of depression and anger that weren’t easy to overcome. The main reason I was depressed was because I couldn’t do anything at all. I was completely immobilized physically. It was a matter of taking very little steps, one day at a time. At first I couldn’t even get out of bed I was so sick. Then my goal was just to get out of bed and sit in the wheelchair for an hour.

BLOOM: How did you get through those dark times?

Eric Wan: It was a struggle between depression and the motivation to go forward. Something that helped was when the therapist at West Park gave me different types of assistive devices. I remember the first time I was able to activate a button to turn on the phone. I was so happy. To anyone who’s healthy, picking up a phone is nothing at all, but for someone who’s paralyzed and unable to do anything, turning on the phone was a huge step forward.

BLOOM: How would you describe your quality of life now?

Eric Wan: I feel I’ve come a long way since I was paralyzed, and I’m quite happy about that. But there’s still a long way to go in terms of my academic pursuits and other aspects of my life.

BLOOM: Such as?

Eric Wan: Right now I live in subsidized housing in a unit that’s adapted for people with disabilities and the building has attendant care. I hope in the future to purchase my own place – maybe a condo – and hire my own attendants.

BLOOM: When you can’t use your hands, how do you control your wheelchair and use a computer?

Eric Wan: I use a sip and puff (straw) system of four commands to control the directions of my wheelchair: a hard sip, a soft sip, a hard puff, and a soft puff. I use a head-tracking device to control the mouse cursor on my computer (Eric has a tiny reflective sticker on his glasses. When he moves his head, the computer translates it into mouse movements and clicks.) I also need a way to type so I use an onscreen keyboard.

BLOOM: But you've just got one reflective sticker. Is that what you use to type each individual letter?

Eric Wan: Yup. It would be like comparing 10-finger typing to one-finger typing. It's a lot slower. Word-prediction helps speed it up.

BLOOM: How are you able to get all of your studies done?

Eric Wan: It takes a lot of planning – and the use of technology.

BLOOM: I know one of the main projects you've worked on in the Bloorview Research Institute is the virtual instrument. This software allows children who can’t manipulate conventional instruments to play music. Why is it important?

Eric Wan: I feel playing music is important to every child because it helps with the creative side of thinking. To be able to introduce music to a child who's not able to do it at all, and open up that possibility, is very exciting.

BLOOM: How has quadriplegia changed you as a person?

Eric Wan: I never thought I would be having this experience. Being in a wheelchair is quite a different way of seeing things. While it creates physical blind spots, it also gives me insight into the importance of assistive technology. The former causes me to run over countless number of toes. The latter enables me to appreciate the beauty of every piece of technology around me, to an extent not many other people do.

BLOOM: Would you have become a rehab engineer if you hadn’t become paralyzed?

Eric Wan: Not at all. In the earlier years of my undergrad studies I tried to think of ways where I could design devices to improve my own life. That got me into the mode of thinking about designing assistive technology for other people. Tom is a large part of the reason I got interested in research in this area. He helped me discover that I could apply my skills to improving the quality of life for children with disabilities. Tom’s research enabled children to say their first words, to access the computer for the first time, and to experience the joy of video-game playing like other children. It reminded me of the first time I was set up with an adaptive switch, months after I was paralyzed. I was ecstatic about being able to turn on a phone. The math here is very simple: increasing one’s ability from 90 per cent to 100 per cent gives 111 per cent times the joy, whereas increasing from 0 per cent to 10 per cent gives infinite times the joy (100/90=111% refers to the ratio of improvement, hence the joy 10/0=infinity, because anything divided by zero is infinity). This is the amount of excitement I experienced being given the technology to do things I otherwise have no capability of doing. It’s the type of excitement I hope to deliver through my career as an engineer.

BLOOM: What qualities have enabled you to cope with your situation?

Eric Wan: Patience is a big factor. Before becoming paralyzed I wasn't as patient as I am now.

BLOOM: What are some of the barriers to people with disabilities leading rich lives?

Eric Wan: I think a major barrier is moving from being in rehabilitation to integrating back into the community. This is a huge step. When you're living in a facility the thought of living independently, where you'll be alone most of the time, is very scary. It's not that scary once you've experienced it, and now I love it. I was part of the Gage program where I was trained to live independently. A lot of things needed to be put in place before I could live on my own: I had to be able to move on my own in my power wheelchair; I needed attendants who were trained with ventilator care; and I needed environmental control units to access the phone or control the computer and lights.

BLOOM: In terms of barriers, what about people's attitudes?

Eric Wan: I don't put much focus on that. I go to school and once in a while I see students staring at me. Maybe they're curious, or maybe they feel I shouldn't be there. I don't put much thought into it because it won't change anything. I focus on where I want to go and my purpose in being there.