NANCY HEINE
(Photo by David DeAntonis, 2003)
People With MS and the Courage to Give
Chapter 19: The Universe Always Guides Us in the Right Direction
EVERY TIME I LET MY PASSION lead me and let go of fear, amazing things come my way. With MS, I have been given the gift of seeing just how strong we really are when we find our passion and follow it, no matter what our obstacles may be.
My alarm clock went off at 5:00 A.M., as always. It was a cold winter day in 1993 and I had a 6:00 A.M. dance/aerobics class to teach, after which I would run over to the campus to teach two keyboard classes before returning home to my piano studio, when my day would really begin. This particular morning, however, I ended up on the floor. My left leg was numb from my toes to my waist. It felt as though massive doses of Novocaine had been shot into my leg. I had never experienced anything like it before. I made my way over to the phone to call a friend who is a doctor. This was the beginning of my journey with MS.
I spent the next several weeks being referred to one doctor after another and ended up with a neurologist and a seven-day hospital stay, having MRIs, spinal taps, and other tests. My family and friends flew in and were there when I was diagnosed with MS. As I heard the diagnosis and took in what it meant, I thought back over the years and remembered the symptoms that I had always attributed to something else—the fatigue that would stop me in my tracks, a couple of odd
falls. The name itself frightened me, but what I was most afraid of was never being able to play the piano again. Teaching aerobics was a fun sideline I could easily give up, but playing and teaching piano was my passion in life.
As I shuffled down the hallway in the neurological floor of the hospital, feeling scared and overwhelmed, I happened to glance into another room and saw a man paralyzed from the neck down. I watched his wife and children talking with him and suddenly realized how grateful I was to be walking at all. I also realized that being grateful is much more fulfilling than feeling cheated out of something. I only hoped I would remember this if I lost the use of my hands.
When I returned home, I went straight to my baby grand and played a song. I can still remember hearing my sister and mother quietly crying in the next room. After I settled into living with MS, my life took another unexpected turn. I started composing, and the music flowed out of me as if it had been there waiting all of my life. After hearing some of my compositions my friend Randy, a dancer/choreographer, asked if I would be willing to write the music for a collaborative work he was doing with Jules Feiffer. I had just started composing, so at first I hesitated. But Randy had been diagnosed with AIDS and this was probably going to be his last big project; how could I say no?
Randy and I worked together for a few months, and Jules Feiffer flew in for the opening. It was a success beyond our wildest dreams. Shortly after the premier of the Feiffer Dances, Randy died, but in that short time we had together he helped me for a lifetime. I only hope that in some small way I helped make his last days the best they could be. By saying yes to his project despite the obstacles, I took a chance, and taking that chance not only helped others but fulfilled me unlike anything I’d ever done before.
Word got around and I became known as a composer for dance. It wasn’t long before I was asked to do the music for a spot in an AIDS benefit concert. My sister
choreographed the dance and I composed the music. Working on a concert for people with AIDS took my mind off the obstacles I was facing with MS.
I occasionally walked with a cane and had had trouble with optic neuritis. But my biggest challenge had been and continues to be the incredible fatigue that accompanies MS. But once again, the experience taught me something invaluable: everyone has their own challenges to face in this life, and it takes work to find the courage to face these challenges.
As I worked with the AIDS patients for the concert, I continued to journal as I had done for years, but I also started a gratitude journal. Each day I found things I was grateful for, like being able to get out of bed, watching a sunset at the beach, or riding horses. What I discovered was the more I was grateful for, the more strength I found within.
Shortly afterward my best friend, who lived in Vancouver, Washington, told me of a job opening that intrigued me—a chance to teach at the Vancouver School of Arts and Academics. After interviewing and taking the job, which was part time and also included teaching at an elementary school, I packed up my baby grand and two cats and moved across the country.
The move was not something I had planned, but I just knew I had to take another chance. Since my diagnosis, my life had become richer and fuller, but there was still one area of my life that did not feel complete. I had been single for forty-five years. It was time to welcome a love relationship into my life. So I decided to take a big chance and do something I never thought I would do—I advertised in the personal ads. I got many responses but returned only one call. I met David for coffee and within the first fifteen minutes told him I had MS. I waited for his reaction. He simply acknowledged it and we kept on talking. We have been talking ever since.
David and I have a deep spiritual connection; I know he came into my life
because I needed to learn about reaching out and finding a loving relationship despite the obstacles of having MS. Again, I earned another magnificent gift when I let go of my fear surrounding MS.
My next lesson came from my students in Vancouver. We decided to put on an MS benefit concert. Watching the students compose music, choreograph, write poetry, and perform for the concert was one fulfilling moment after another. It energized me, inspired me, and gave me a new respect for our youth. It gave me the courage to continue to compose and teach and help others, despite the overwhelming fatigue of MS.
When the school year ended I took off for a two-week artist-in-residence program in the Rocky Mountain National Park. For two weeks, I lived in an historical cabin, far away from most people, with only a daily visit from a forest ranger on horseback, bringing me my mail. I had applied for the residency because I wanted to live in the elements to foster love, appreciation, and knowledge of nature. Little did I know that my two passions, music and the environment, would merge as I began to compose music based upon the birds’ songs that echoed in the mountains. I completed the music book and donated it to the Rocky Mountain National Park. Once again, a new experience stretched me in ways I could not have foreseen. Staying alone in a rustic cabin with no one to talk with but myself gave me time for reflection.
I began to see a pattern emerging in my life. Every time I let my passion lead me and let go of fear, amazing things would come my way. In this experience I was given the gift of seeing just how strong we really are when we find our passion and follow it, no matter what our obstacles may be. I returned to school and the students with renewed energy and additional wisdom. The school year had barely begun when we had to face September 11, 2001.
On September 12, I walked into my Music Special Projects Class and asked
my students, “How do you feel and what can we do?” One student said that he had written a song the night before and that he wanted to send it to New York. We listened to the song with its poignant words and haunting melody and cried together. Out of our mourning we decided what would most help us heal. We committed to compose music, write poetry, and create visual artwork reflecting our love and concern for the people of New York and to compile a book of these works to send to New York for the one-year remembrance on 9/11/02. Once again my students’ spirit of giving just amazed me. All year they worked hard composing, drawing, writing, designing the cover, and healing.
One day one of the seniors at school asked if we might get some contributions from my elementary school students. Those contributions turned out to be just the final touch we needed for this miraculous book. When some of the kids were interviewed on a local television news program, they said they wanted people in New York to know that people on the other side of the country loved them—a simple truth but one that we all needed to hear over and over again. Our book, With an Eagle’s Tear, was published and sent to over thirty different places in New York.
I shudder to think of what my life would be like now if I had continued to live out of fear of losing the use of my hands, not being able to play the piano or compose. The disease itself may have many unknowns, but there are one or two things I know for sure about my life with MS. When I reach out with love to help others, I receive love in return, and this heals me. When I am grateful for what I have, the universe opens up and guides me in the right direction. When I face life’s obstacles with courage, life never lets me down.
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