Her Eyes

The eyes are the windows to the soul, a traditional proverb that was quoted by William Shakespeare. For one young woman, her eyes have become her way to connect her soul to the rest of the world, and for her to communicate with those that she is closest to. Her eyes have become her voice.

When she was born, she was less than 5 pounds and was diagnosed with cerebral palsy soon after her birth. Born in Hawai’i, her parents gave her a name to reflect her physical stature and their hopes for her future. Paola, from its Latin base for Paul, reflects her small infant body. And in the Hawai’ian language, Paola means rapid recovery from illness. Her mother and father have dedicated much of their life’s efforts to making Paola’s life meaningful. She had physical limitations, but with effort and practice, her mental capabilities have emerged.

As a little girl with cerebral palsy, Paola could not use her arms or legs, and she could not verbalize her thoughts or ideas. Over time it became clear that she could understand what others said to her. The only way she could communicate with others was to answer yes or no questions asked of her, and those talking with her using motions and gestures, like a real life game of charades. You could tell by the expressions on her face and the “smile” in her eyes that she was intelligent and would someday be able to interact with those around her. She is a people person. Whenever someone would approach her, a smile would light up her face and you could tell she enjoyed the company.

Her family would use their musical talents to sing to her, and while Paola could not dance, her father would hold her and dance with her, giving her the feeling of movement with the music. She has also found joy in going to natural history and art museums, as well as visiting the zoo. Going shopping with her mother, being out with others and being exposed to the world give her energy. She also likes to watch movies and drive around in the car.

Because of her physical condition, she has had to endure a lot of chronic pain. She has had eight surgeries on her spine to fix severe scoliosis and on her hips to try to rebuild her hip joint. Her family is especially grateful for the doctors and staff at the Shriner’s Hospital in Honolulu for all that they have done for her, and the months of recovery and physical therapy. She is determined and works hard to learn, to do whatever she can.

She has dreams of becoming a writer, but needs to learn more words to express herself in writing. She is anxious to learn and develop her abilities so she can share about her world, her life, thoughts, feelings, hopes, dreams, and fears.

A few years ago Paola’s speech therapist suggested a device called a Tobii. A computer controlled device, somewhat like a tablet, that can track her eye movements and has a speaker built in to it. They created a customized menu specifically for Paola. Attached to her wheelchair in front of Paola’s face, Tobii can sense which part of the menu her eyes are looking at, and this allows her to look at the screen and select words or phrases that she wants to say. Once selected, Tobii speaks those words out loud, so those around her can hear what she wants to say. It was amazing how quickly Paola learned how to use this new tool.

While there are things that concern Paola, like the fear of what will happen when her parents can no longer care for her, she is focusing her life on being happy. She finds love and joy being with others, going to church, and praying with others. She has an increased awareness of others with different abilities, whether it be cerebral palsy, or other disorders. She can understand and relate to them, and wants to recognize their humanity as others recognize and celebrate her own humanity.

Before Tobii, her family and the friends that got to know Paola could communicate and interact with her. She was able to learn, grow, and develop her mental skills. Tobii has given voice to Paola, and allowed her to say what is in her heart and in her mind to a wider audience. Now, Paola’s eyes provide her with a window so that others may see her soul, enjoy her company, and be blessed by her spirit of love and friendship.

In this painting of Paola, I wanted to focus on her eyes, and to present a hint of her Tobii system (shown on the right side). The Tobii menu in the background hints of a multi-paned window behind her, bringing light into her life and an ability to communicate with others.