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.