My two favorite hobbies, Music and Poetry, were crucial to healing my body and soul when my husband died in March, 1996, and I was diagnosed with Parkinson's one year later.
I joined the Rockville Chorus and learned that you can't think of anything else when you're singing except the joy of the music and the pleasure of watching the smiling faces of the audience.
While music was food for my soul, it was also practical. It provided vital exercise Parkinsonians need to keep muscles working. Choreographing little group numbers for concerts was great fun as well as good exercise.
The voice tends to weaken with Parkinson's and singing serves as therapy to keep the vocal muscles strong. My husband had a long illness before he died of cancer. He was adamant that he didn't want the "moon eyes," people looking at you with "poor thing" expressions. I found out what he meant when I felt overwhelmed with pity from well-meaning people when I told them my diagnosis.
However, when I participated in concerts, composed cheerful poems, and lived a busy life, I think they came to realize that you don't stop living when you're diagnosed with Parkinson's. I try to tell as many people as I can and encourage them to be open about it -- so it's not an unseen disease and newly diagnosed people will not be devastated when told they have Parkinson's.
I became a PWP (Person Who Writes Poetry) shortly before my 70th birthday. My daughter sent me a book by Carolyn Kennedy of her mother's favorite poems. In it she also told of the Kennedy custom of reading poetry for birthdays. I thought that was a good idea so I began writing little poems to my twelve grandchildren on their birthdays.
Next I started writing about things that moved me that had been mulling around in my mind for awhile. I went to a poetry reading by Mattie Stepanek, the 12 year old poet with Muscular Dystrophy who carried his life support systems on his back. He was inspiration to me; he wrote four books of poems, his "heartsongs" for peace, despite his formidable limitations. We lost a brave, talented young man when Mattie passed away this year. I think God wanted him back.
"Person With Parkinson's" was inspired by friends in my Parkinson's exercise class. When I got to know them, I realized they were individuals with all kinds of achievements striving to keep their identities and coping as well as they could with class and bravery.
One day I came upon one of my classmates on the floor at the bathroom door -- he couldn't get up to go in. I felt like crying at the sight of this man, a federal judge with all the dignity and respect that it implies, humiliated by this cruel disease.
I am most proud of the poem I wrote called "Michael's Eyes," about my friend's son, who has been a quadriplegic for 19 years. He can move only his head and he talks with his eyes, letter by letter; and word by word; eyes left means yes, right means no.
Amazingly he was able to save his brother Chris's life as a donor for Chris's bone marrow transplant. I was so touched I wrote a poem for him and sent it to The Washington Post -- I thought the world should know about Michael.
They agreed and published the story, including pictures, giving a huge boost to Michael's morale. You could see the happiness shining in Michael's eyes, he was so thrilled to be able to give life to his brother who had helped him so much.
My muse was a little late in coming but I'm so glad she came. She's a welcome antidote for my Parkinson's. The future can be depressing if you dwell on it, but my poetry, hardly Pulitzer Prize material, allows me to give pleasure to people, writing about them, sometimes amusingly, sometimes seriously.
My pen is like a Geiger counter, digging up treasures of thoughts and ideas I didn't know were there. It is something I can always do no matter what life hands me in the future.