Nicole von Ruden is the kind of person who lights up the room the moment she walks in. Born in 1967, she has worked as an elementary school teacher and as a producer for CNN and for the television show Entertainment Tonight. She did volunteer work at a school for the blind, with children who had cancer and with children who had AIDS because they had been raped or born infected. She was hardy and active. She loved Whitewater rafting and mountain biking, had run a marathon, and had gone to Peru to hike the Inca trail.
One day when she was thirty-three, engaged to be married and living in Shell Beach, California, she went to an eye doctor for double vision that had been bothering her for a couple of months. Alarmed, he sent her for an MRI scan the same day. When the scan was done, she was admitted to the hospital. The next morning, January 19, 2000, she was told she had a rare inoperable brain tumor, called a glioma, in the brain stem, a narrow area that controls breathing, and that she had between three and nine months to live.
Nicole's parents immediately took her to the hospital at the University of California at San Francisco. That evening the head of neurosurgery told her that her only hope of staying alive was massive doses of radiation. A surgeon's knife in that small area would kill her. On the morning of January 21, she got her first dose of radiation and then, over the next six weeks, received the maximum amount a human being can tolerate, so much that she can never have radiation again. She also was given high doses of steroids to reduce swelling in her brain stem, which can also be fatal.
The radiation saved her life but was the beginning of new woes. "About two or three weeks into the radiation," Nicole says, "I started having tingling in my right foot. With time it climbed up the right side of my body, up to my knee, hips, torso, and arms, and then my face." She was soon paralyzed and without sensation on her whole right side. She is right-handed, so the loss of that hand was critical. "It got so bad," she says, "I couldn't sit up or even turn in bed. It was like when your leg falls asleep, and you can't stand up on it, and it collapses." The doctors soon determined that it was not a stroke but a rare and severe side effect of the radiation that had damaged her brain. "One of life's little ironies," she says.
From the hospital she was taken to her parents' home. "I had to be pushed in a wheelchair, pulled out of bed and carried, and helped into or out of a chair." She was able to eat with her left hand but only after her parents tied her into a chair with a sheet, to prevent her from falling — especially dangerous because she couldn't reach out to break a fall with her arms. With continued immobility and doses of steroids, she went from 125 pounds to 190 and developed what she calls a "pumpkin face." The radiation also made patches of her hair fall out.
For six months Nicole became so depressed that she stopped speaking or even sitting up in bed. "I remember this period, but I don't understand it. I remember watching the clock, waiting for time to go by or getting up for my meals, as my parents were adamant that I got up for three meals a day."
One of them told Nicole about the Taub clinic, and she decided to undergo CI therapy. There she was given a mitt to wear, so she wouldn't be able to use her left hand. Not only did she have a mitt. "Because I talk with my hands, and I'm a storyteller, they had to strap my mitt to my leg with a Velcro strip, which I found very funny. You definitely lower your pride on that one.
"We were each assigned one therapist. I was assigned Christine. That was an instant connection." Mitt on her good hand, Nicole soon was trying to write on a white board or type on a keyboard with her paralyzed hand. By the end of the week, she was putting the chips into a small slit in a tennis ball can. Again and again she stacked rainbow-colored baby rings on a rod, clipped clothespins to a yardstick, or tried to stick a fork into Play-Doh and bring it to her mouth. At first the staff helped her. Then she did the exercises while Christine timed her with a stopwatch. Each time Nicole completed a task and said, "That was the best I could do," Christine would say, "No, it's not."
Nicole says, "It's really incredible, the amount of improvement that occurred in just five minutes! And then over two weeks — it's earth-shattering. They do not allow you to say the word 'can't,' which Christine called 'the four-letter word.' Buttoning was insanely frustrating for me. Just one button seemed like an impossible task. I had rationalized that I could get through life without ever doing that again. And what you learn at the end of the two weeks, as you are buttoning and unbuttoning a lab coat rapidly, is that your whole mind-set can shift about what you are able to do."
By the end of the second week, I was actually making the pot of coffee with my affected arm. If I wanted coffee, they said, 'Guess what? You get to make it.' I had to scoop it out and put it in the machine and fill it with water, the whole thing with my affected arm. I don't know how drinkable it was."
When asked how she felt as she was leaving.
"Completely rejuvenated, even more mentally than physically. It gave me the will to improve, and have normalcy in my life."
She hadn't hugged anyone with her affected arm for three years, but now she could do so again. "I am now known for having a wimpy handshake, but I do it. I'm not throwing a javelin with the arm, but I can open up the refrigerator door, turn off a light or a faucet, and put shampoo on my head." These "little" improvements allow her to live alone and drive to work on the freeway with two hands on the wheel.
Nicole is now working full-time as a producer for Entertainment Tonight.
Excerpted from the book: The Brain That Changes Itself
Stories of Personal Triumph from the Frontiers of Brain Science
By Norman Doidge, MD, Penguin Publishing, December, 2007