In January of 2004 I traveled on my own from New York to Cape Cod to visit my sister-in-law, Aylette.
In July, I would be going into my seventh year of PD since diagnosis. I had arranged my trip to time out with when my meds would be "on," and I had also brought some gear which would help me start my day at Aylette's house just as I would at home.
I had brought a Thermos to set up tea for my breakfast tray the night before, close to the bed, a starter of non protein food to get through that first morning with my meds, checked out the path to the bathroom, and settled in.
Aylette kept saying how impressed she was that I was so organized! "How," she asked, "did I learn all this stuff?" "In the theatre," was my automatic reply. But it took me another year and a half to realize that the "theater" was just the catalyst.
My first training in the theatre was at The Goodman Theatre School in Chicago where I studied costume design. The theatre gave me the first discipline I ever had that I really wanted -- organization to design and build costumes for a show of any size, create a costume chart -- actor by actor -- scene by scene -- sketch, fabric swatch, cut patterns plus learning to fit and sew my own design.
All of this skill was then used to create a glorious world, entered into and finished on time to open a show. Wow! I had never worked so hard in my life. And I loved it!
I designed costumes for stage and film, for ballets and operas, musicals, horror movies, and dramas for almost 15 years. I knew I had "lost it" the night I intentionally left the straight pins in the underarm seams of a very difficult leading lady on Opening Night. It was time to find something else to do!
I married, had two great kids, and went back to college at night when my youngest was three. With a new degree in History, another love the theatre led me to, I began writing film scripts.
My first produced script was a three part mini-series set in the 16th century, called ROANOAK, and aired on PBS. When the money began drying up for "minis," I began writing for the live theatre.
The theatre is where you write for love -- the money can be a long time coming. However, you are counted on to hold up your end in what is a communal effort. This is a given. You must be confident and flexible at the same time with every part of the production. It also helps if you keep your sense of humor, respect your co-workers, and bitch only as a last resort. It is not unlike having Parkinson's.
I began living with hope when I met PD neurologist Dr. Lucien Cote. His extraordinary kindness and compassion, immediately helped me to get over my terror of Parkinson's. "You are so lucky that it's Parkinson's," he said to me on the first of our many long quarterly office visits, "because there is so much we can do for you!"
Though it took more time before I could truly accept that I had this disease -- it is a hell of a concept -- somewhere in that time, I began to realize that the same muse, or spirit, or angel -- whatever name you gave it -- which filled me as a theatre artist, could be called upon again as I re-entered the world as a person with PD.
Now that I am in my eighth year since diagnosis, I have learned that to live with PD, I have to manage it as I do my theatre work. If I can hold up "my end" by exercising, eating right, keeping my sense of humor -- take responsibility for all I am able to do as long as I am able to do it -- then I can go a long way on this PD trip which is not unlike beginning a new play. Both begin with hope and optimism. Both have unknown outcomes.
Even so, I have learned to keep going on with my lively, rewarding, frustrating, demanding, joyous life of family, friends, work, gardens, travel, theatre, dinner parties, exercising, Tai Chi, swimming, and more -- that it almost resembles the life I had to leave behind.