Monday, December 17, 2012

My Story: Giving Hope to Others Like Me



I remember the day that changed my life. It was October 5, 2011, when I opened an email from a friend, clicked on the link she sent and watched as a quadriplegic man moved a robotic arm with his thoughts.

It was thrilling to watch, and my first thought was, “It is so cool that he can do that.” My second thought was “I wish I could do that!”  I’ve been a quadriplegic for eight years and wheelchair-bound for 12. As the video ended, a UPMC doctor said that for the research to continue they needed money, scientists, and – volunteers! A phone number came up on the screen.

“Write the number down!” I said to Karina, my attendant. She paused the video and wrote down the number. As soon as the video was over, I called.

That was the beginning of my journey. After much testing, I was approved to be the next study subject. I had brain surgery to have two arrays placed on top of my brain, under my skull. Ten days later, cables were hooked up to those arrays in my head. The team and I started moving Hector – my name for the robotic arm -  with my thoughts.

I have been going to the lab three times a week since then. For each session, I am hooked up and we train the computer to decode my thoughts into instructions for Hector. Then I move Hector, whom I have come to see as an extension of myself. By the end of that first week, I was moving Hector three different ways – up and down, left and right, and forwards and backwards. Over the next several months, I learned to pinch, grasp and release with Hector’s fingers, and twist the wrist several different ways. Each step took just one day to learn, but weeks to master. Now, after nine months, Hector and I are able to pick up food so I can feed myself and lift a cup with a straw so I can drink.

For me, it’s been one of the most exciting endeavors I have ever undertaken. Getting married was momentous. Having children, equally so. But lots of people get married and have children. Being with a team of scientists and using cutting-edge technology that makes me the only person in the world who can scratch her nose with a robotic arm, well that’s thrilling.

It never occurred to me to not volunteer for this study. They needed an articulate quadriplegic. They needed me. But more than feeling needed, I was awed that I would once again have the power to effect physical change on the world around me. I haven’t been sorry once. Sure, I have two small pedestals sticking up from the top of my skull. So what? I have looked different than other people for a long time, in my extra long wheelchair that I drive with my chin. I didn’t do this to look beautiful. 

One of the most satisfying emotional rewards for me is knowing that handicapped people around the country, and even around the world, will see what we have been doing, and feel hope. They’ll realize that as the technology progresses, the day will come closer when they might have brain implants that wirelessly let them control a robotic helper, like Hector, or even a prosthetic limb. Being able to share that hope and promise for the future makes me feel honored, and very, very grateful to be part of this.

2 comments:

  1. Great work Jan! Very, very inspiring.

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  2. This is great...I am now writing a report about your work and Pittsburg university work with you for one course in my master, in Spain.
    We can keep moving forward, Jan. People like you and the people you are working with will make a better world, I am pretty sure! I hope I could be part of something like that one day!
    Regards,
    Estefania

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