In the winter of 2009 my friend and recording engineer, Matthew Zimmerman, called to invite me into a remarkable project that was being recorded at his studio, Wild Sound, in Minneapolis, Minnesota. A 24-year-old composer named Karly Wahlin was seeking a producer for a collection of ten of her classical piano pieces and he knew I was the person for the job.
Karly lives with a genetic condition called Rett Syndrome. Rett, which mostly affects girls, makes it impossible for Karly to walk on her own, speak, control her movements, and even breathe in a relaxed way. She experiences frequent seizures, vision problems, digestive issues, acute anxiety, and orthopedic problems. Every day Karly struggles to live in her body in ways that most of us cannot imagine. Nonetheless, she and her music therapist, Karen Bohnert, found a way for her to compose music one laborious note at a time. Each song takes a year to complete. When I heard a rough recording of her music, I was touched by the beauty, wit, and purity of her musical “voice.” I whole-heartedly said yes to producing her record.
Karly named her CD “In My Own Voice.” This is particularly significant given that she was unable to communicate with the outside world until the age of ten. The breakthrough came when her mother, Lois Swope, began experimenting with stabilizing Karly’s hand on a computer keyboard. This facilitated communication enabled Karly to express her preferences, joys, love, and ideas for the first time in her life. And she had a lot to say!
Eventually Karly started a blog that is now followed by thousands of people around the world. She has become a powerful advocate for others with her condition and is one of a few women who are able to describe what it is like to live in what she calls her “Rett Body.” Karly’s great wish is to use her music and writing to support people with disabilities of all kinds to be recognized for their gifts, not just their limitations.
Karly loves many things: praying, music, her family and friends, good stories, writing poetry and blogs, her witty and rambunctious pony, Beau (to whom the song, below, is dedicated), and spending time in the beautiful garden her friends and neighbors recently created for her. Karly is also a public speaker for audiences that have included professional groups, people in recovery from addiction, and others who live with disabilities. Her mother, Lois, reads Karly’s carefully crafted messages aloud to her audiences. Karly is present for her speeches whenever her health allows.
“My Pony, My Beau”
As a professional voice coach, I think about voices every day. Getting to know Karly has changed the way I think about voice forever. Even though she can’t speak, I’ve come to recognize her distinct “voice” in the way she expresses herself through words and music. Our friendship has been forged through many profound conversations about self-expression, music, spirituality, creativity, living, and dying.
Karly’s poetry is elegant and deep, expressing both the truth of her struggles and shining gems of spiritual wisdom. I humbly offer Karly the last word. Here is one of the poems we recorded on her CD:
In the quiet of my heart
I am slow
I breathe deeply
I sit quietly
I think freely
I do not struggle
I love deeply
I speak in ways others can hear
I am more than my body
© Karly Wahlin (used by permission)
By Barbara McAfee
Portions of this post are excerpted from Full Voice: The Art and Practice of Vocal Presence by Barbara McAfee. (Berrett-Koehler Publishers, Inc., San Francisco).