When I was growing up, my sister Joann was my hero. Never mind the fact that she couldn’t stand me. I was seven years younger and when I came along, I took over her position as Princess of the Family. She didn’t bother masking her disdain for me. (You can even see it in this early picture of us with our mother. She’s thinking “how can I get rid of her??”) Still, I worshiped her. In my eyes, she was beautiful and sophisticated, self-confident and talented. I remember thinking, “when I’m her age, maybe I’ll be that amazing.” Yet I could never catch up. No matter what age I became, she was always seven years older and seven years more awesome than me.
During my teen years, something shifted in our relationship. I’m not sure exactly how it happened, but we began to see each other as real people instead of as an enemy or an idol. We saw each other’s strengths and weaknesses more clearly and we became confidants and best friends.
As an adult, Joann, who had been an artist for years, fell in love with community theater and became an actress, ultimately marrying a fellow actor, Mark. Then tragedy struck. Mark, who was seven years her junior, suddenly died of undiagnosed kidney disease at the age of thirty-eight. It was a terrible blow for our whole family—a family that had always seemed a little bit charmed with good health.
Shortly after Mark died, Joann visited me in Virginia. She said she’d been having some trouble walking. Her legs felt sluggish and she could no longer move quickly. I was a psychotherapist at the time and immediately jumped to the conclusion that she was having a psychosomatic reaction to her sudden widowhood. I wish that had been the case. What she was experiencing was an early manifestation of Multiple Sclerosis.
Her progressive form of MS didn’t respond to any of the available medications and she fought the disease hard as it stole her ability to walk. At first she used a cane to get around, but quickly progressed to a mobility scooter and later, an electric wheelchair. She married a man who saw the amazing woman behind the illness. Michael took good care of her for many years. During that time, she had to stop painting and–a harder loss to bear–she had to stop acting. She could still direct plays, though, and she took on that challenge with her usual energy.
When Michael died of cancer, Joann knew she couldn’t live alone. It was time to hire a twenty-four-hour aide. After a few false starts, she found Nina, who quickly became part of our family. The women and men who do that sort of work fill me with awe.
Not long after Joann’s initial diagnosis, I developed Rheumatoid Arthritis. So much for our family’s run of great health! Jo and I had many long conversations about living with chronic illness and about end-of-life issues. Joann would say “when I can no longer scratch my own nose, I want to be able to end my life.” She became a passionate advocate for death with dignity and she remains active in that fight today.
For years now, she has been unable to scratch her own nose. Nina feeds her, bathes her, rolls her over in bed. Joann is completely dependent on her. She can no longer type, so she uses voice recognition software on her computer. She’s still active in community theater, although directing plays has become difficult without the use of her hands to make notes. She reads voraciously, belongs to several book clubs, is working on a memoir, and remains active in fighting for legislation to promote death with dignity.
Why am I telling you about Joann? Because she’s the inspiration for my character Graham in Pretending to Dance, my latest novel on sale today. Graham has the same type of MS as Joann and the same can-do attitude—as well as the same desire to have control over the end of his life. I admire Graham’s strength and creativity and I especially admire how deeply he loves his daughter, Molly, the young protagonist in the story.
As I wrote Pretending to Dance, I worried that Joann might be offended or upset by my portrayal of Graham. I asked her to read an early draft and was relieved when she said she loved it. She felt as though I’d captured life with progressive MS well.
But Pretending to Dance is not a story about Multiple Sclerosis. It’s a story about the love between a father and daughter, the value of truth in a family, and making peace with the past. I’m grateful to Joann for the inspiration she gave me in creating Graham’s character and for her openness and honesty in helping me paint a realistic picture of his life.
Joann may have lost many of her physical abilities, but there is one thing about her that hasn’t changed in all these years: she is still my hero, now more than ever.