On April 16, actress/author Kathryn Leigh Scott released her memoir, Last Dance at the Savoy: Life, Love and Caring for Someone With Progressive Supranuclear Palsy, about her husband’s battle with this rare neurological disease and her experiences caring for him.
Please make sure you read the excerpt after the interview.
Tell us a bit about yourself.
Writing and acting have been twin pursuits for me since I was a youngster growing up on a farm in Robbinsdale, Minnesota. I now split my time between New York and Los Angeles, continuing to act and write. I’ve written several nonfiction books and three novels, including Dark Passages (2012), Down and Out in Beverly Heels (2013), Jinxed (2015), while also appearing in a recurring role as George Segal’s girlfriend in The Goldbergs and in the 2015 launch of Marvel’s Agents of S.H.I.E.L.D. I wrote Dark Shadows: Return to Collinwood about five decades of the television series that launched my acting career. I played Maggie Evans and Josette DuPres, the fiancé of vampire Barnabas Collins (1966-1970), and appeared in a cameo role in the Johnny Depp/Tim Burton film, Dark Shadows (2012).
What or who inspired you to start writing?
I started writing stories as soon as I was able to put pencil to paper. I wrote a play about George Washington when I was in second grade and gave all the good lines to Martha, the role I cast myself in—knowing then that I would always want to both write and act! I wrote for the school newspaper and won a state award for an interview I did with poet Carl Sandburg when I was sixteen years old. If I hadn’t got a scholarship to study acting, I would have pursued a career in journalism. I don’t remember a time when I didn’t consider myself a writer.
How much of yourself, your personality or your experiences, is in your books?
Last Dance at the Savoy is a memoir about my husband’s battle with a rare neurological disease and my experience caring for him. I draw a great deal on my life experiences and the many places where I’ve lived, worked and traveled in writing both fiction and nonfiction. When I was still a student I worked as a Bunny in the New York Playboy Club, where I met young women who are still my friends today, and wrote about it in “The Bunny Years.” I’ve also drawn on my life as an actress, enabling me to write authentically about Hollywood. I’ve written several books about “Dark Shadows,” the series that launched my career, in which I played Maggie Evans and Josette DuPres, the fiancé of vampire Barnabas Collins.
What fuels you as an author to continue to write?
Imagination fuels me as an actress and a writer. I always begin with “what if?” and that informs everything I do creatively. I like turning the expected inside out imagine a place, time and circumstances
Do you outline your books or just start writing?
I usually jump in and start writing to see where it goes, what “voice” I’m hearing. After spinning out some “what ifs” I generally write a detailed synopsis of the full story. I rarely outline more than two or three chapters at a time because I want the story to evolve and I usually just begin by elaborating on my synopsis. I hate to face a blank page!
Please tell us about your current release.
Last Dance at the Savoy: Life, Love and Caring For Someone With Progressive Supranuclear Palsy is the story of my husband’s battle with one of the prime-of-life diseases that has also claimed the lives of Robin Williams (Lewy Body) and Dudley Moore (PSP), and my experiences as a caregiver. Some 20,000 Americans have been diagnosed with PSP, about the same number afflicted with ALS (Lou Gehrig’s disease), yet little is known about this neurological disease for which there is no cure or treatment. Our challenge was to live our life together fully, making the most of each precious moment while facing up to the inexorable decline in my husband’s health.
What inspired you to write this book?
When my husband was diagnosed, I trolled the Internet hoping to find not only facts about PSP but also personal stories from people who had dealt with the challenges of caring for someone with a neurological disease. I wanted to know what to expect and how I could best care for him during the progression of the disease and all its ramifications. Figuratively speaking, I wanted someone to hold my hand and guide me through what I knew would be a very physically and emotionally difficult journey. There was so little available on the Internet at the time, and no book that could provide me with everything I needed to know and understand. Drawing on my own personal experience, I’ve written what I hope will provide guidance and inspiration to others embarking on their own journeys with these prime-of-life diseases.
How did you come up with the title?
Last Dance at the Savoy is very much a love story that began on a romantic evening dancing at London’s Savoy Hotel when, wrapped in each other’s arms, we knew we wanted to spend the rest of our lives together. It was a fairy-tale beginning to a wonderful marriage, but “happily ever after” came with its challenges when we began noticing my husband’s difficulties with eye-hand coordination, repeated falls, slurred speech and other symptoms of a neurological disorder. But we continued to live life fully, holding each other close until our last dance together.
What kind of research did you do for this book?
When my husband was diagnosed with PSP, his neurologist suggested I keep a journal. As a writer I already did write daily, but I began to focus on recording the effect of various medications and keeping track of the progression of the disease, as well as the adjustments we continually made to accommodate his changing needs. Everything was recorded as it happened, including my experiences as a caregiver and our evolving emotional responses to living with a terminal disease. I also learned a tremendous amount not only from my own hands-on daily caregiving, but from the professional medical personnel conducting the support groups I attended. This journal was very useful as a reference for my husband’s doctors when he was enrolled in drug trials and immensely helpful to me as a template for writing this book. Having this diary of our journey is a great comfort to me now and I am so grateful I can share my experiences with others as they deal with the challenges of living with a neurological disease.
What was the most difficult thing/scene to write in this story?
I shed many tears in writing this book, reliving each moment as I read through the journal I kept throughout my husband’s illness. The most difficult scenes to recall and write about were the times when I had to acknowledge my shortcomings as a caregiver, becoming impatient or short-tempered and gave into my own despair. I could not write an honest book without acknowledging the physical strain and fatigue, as well as the emotional fears and anxiety that are a part of caregiving. It’s very difficult to see someone you love suffer and know you are losing your loved one day by day. There were many moments when I ached with longing and had to take a walk in the garden before I could return to my desk and continue writing.
We had spent such a lot of time apart during my mother’s illness that once Geoff and I were together again in Los Angeles, I was able to see him with fresh eyes—and I was concerned. Gestures that had once seemed idiosyncratic—such as the way he fumblingly adjusted his eyeglasses or scratched his head or tapped surfaces with his fingertips before setting something down—now struck me as odd behavior. Sitting with him at dinner, I found myself pressing my thumb on the base of a stemmed glass so that when he reached for it he couldn’t tip it over.
I’d hoped the time apart would ease the tension that had been building up between us. It wasn’t so much that we were bickering, but more that we were trying so hard not to do anything that would lead to an argument or hurt feelings. I made a point of not commenting in any way if Geoff tripped, stumbled or tipped something over. He hated being seen as clumsy or awkward, and avoided any situation that required dexterity.
Yet, he would somehow manage to hurt himself doing the most ordinary task. He favored one hand and would therefore drop dishes, newspapers, cartons of milk, or injure himself just lifting the lid on a rubbish bin. He was simply not capable of holding the lid up with one hand and using the other to toss in a sack of garbage. If he broke something, he became sullen. He didn’t apologize. He didn’t offer to clean up.
When Geoff retired from Los Angeles magazine, we joked that I would have to take over as “staff.” In fact, “staff” became his funny nickname for me. Adding paper to the copy machine or wrapping a package were tasks he simply could not handle because of his growing difficulty coordinating two hands. He’d try to fill ice cube trays in the old refrigerator in the garage where we kept beer, wine, bottled water and juices. Hours later I would find pools of water on the garage floor and the ice cube trays in the freezer compartment were barely filled.
When we gave dinner parties, it was Geoff’s job to “set the scene.” While I worked in the kitchen, he lit candles, chose music, filled the wine bucket with ice and set glasses on the bar. But on a couple of occasions I found him struggling to open bottles of white wine hours before dinner. Once I stopped him from opening a bottle of champagne more than an hour before guests were to arrive.
“Stop! Why are you doing that?”
“I don’t want to be stuck opening bottles when everyone’s watching me.”
“But it’s too early.”
“Then do it yourself.”
So I did—and also took on the job of lighting the gas logs in the fireplace when it became dangerously apparent that Geoff could no longer do it. One evening I smelled gas and found Geoff sitting on the living room couch trying to reach the gas peg while struggling to click the fire starter.
“You could have blown us up!”
“I’ve been doing this for forty years,” he shouted. “If you don’t like the way I do it—.“
“Use two hands! You can’t do this without getting on your knees and turning the gas on with one hand and lighting the logs with the other.”
“So you do it!”
Doing everything came at a price. The more I took on, the less confident Geoff became. If he was slow to do something, I stepped in and then bore the brunt of his frustration. “You just have to show me up, don’t you?”
Geoff, who had always been a warm, gracious host, deft with conversation and full of good stories, had begun to fall silent once the meal was served. He’d prop his elbow on the table, lean awkwardly over his plate and use only one hand to eat. He handled a soupspoon like a shovel and couldn’t manage to hold a fork to eat salad.
I’d continually remind Geoff not to clutch his wine glass, but set it on the table; to use both his fork and knife; take smaller bites so he wouldn’t choke and to please, please cover his mouth when he coughed. I sounded like the dreaded hall monitor, or the nanny from hell. Geoff was sick of hearing “a laundry list of complaints.” Sometimes we argued, often we rode home from an evening out in silence. I could not understand how he could have become so oblivious and ill mannered, and he wondered why I’d stopped loving him.
“You never used to complain,” he’d say.
True. No matter how hard I tried not to, I’d begun to complain a lot. So I saved my complaints for important things, such as, “Please shower and get dressed so we can leave on time!” Then, as we were walking out the door, I’d notice he wasn’t wearing socks, or had forgotten his belt. My husband, who had always cared about his appearance, was no longer willing to wear certain shoes, pants or shirts. We struggled and argued over the most mundane things.
It wasn’t until one evening late that summer, when we were getting dressed for a black tie event that I realized how difficult it was for him to get dressed. I ended up helping him with everything, including his socks and shoes. I teased him about needing a butler and gave him a kiss, hoping our evening wouldn’t be spoiled.
Life was becoming a lot less fun. Too often I’d offer help when he didn’t want it, which annoyed him. Worse, I failed to notice when he did need help. Frustrated, he’d give up and we’d suffer the consequences.
“Why didn’t you just ask me to put your belt through the loops?”
“I didn’t want to bother you.”
At the least sign of exasperation from either of us, tempers flared and we ended up saying hurtful things neither of us meant.
“Leave me alone! You don’t love me anymore. Divorce me!”
“I don’t want a divorce. I just want you to put on a clean shirt.”
We loved each other and our marriage would not come to an end over table manners and wardrobe issues. But anger, frustration, resentment and hurtful words were taking a terrible toll. I made every sort of adjustment and concession to avoid trouble, which meant we no longer talked about it.
When her husband is diagnosed with progressive supranuclear palsy (PSP), a neurological disease for which there is no cure so far, actress/author Kathryn Leigh Scott’s very active and creative life comes to a halt. Scott “yearned for someone to figuratively take my hand and walk with me through the difficult times I knew were ahead.” Last Dance at the Savoy is the story of Scott’s marriage to Geoff Miller, the founding editor of Los Angeles magazine, and is filled with insights into caregiving based on her practical experiences.
About the Author
Author/Actress Kathryn Leigh Scott has written several books of fiction and nonfiction. She starred in the cult favorite “Dark Shadows” and has recently appeared in a recurring role on “The Goldbergs.” She grew up on a farm in Robbinsdale, Minnesota and currently resides in New York City and Los Angeles.
You can find out more about Kathryn on her website.
You can purchase Last Dance at the Savoy on Amazon.