"A Caregiver’s Journey From Rage to Healing"
By Esther Haynes
Jacqueline Grossman Massing met her future husband, Alan, at age 12 in Cleveland, in 1943. “We’d tease Alan because he was a serious student, and he used to come outside and tell us to be quiet so he could study,” says Massing, who was friends with his younger sister. “I was a tall girl, so I pushed him off his porch. And then he stopped telling me to be quiet.”
At that time, Massing was learning all about strength, in its many forms: She had been forced into the role of caregiver for her two sisters, then ages 6 and 4. Her family was Jewish, from France, and a few months before she’d met Alan, her parents had been unable to obtain exit visas for their whole family. So they loaded the children onto a refugee boat headed to the U.S. to prevent the possibility that they might be captured by Nazi troops. “My parents made me swear that I would not let anything happen to my sisters,” Massing says. “I became their surrogate mother.”
Born in Paris in 1931, Massing had a beautiful childhood until 1940, when threatening airplanes suddenly appeared in the sky, dropping bombs. “We had to run to an air-raid shelter,” says Massing. “That’s when I first became aware of the horrors of war.”
Soon after that, the family quickly left Paris for Toulouse, then Luchon but the Germans closed in: “My parents decided to hide us and escape to Spain. My sisters and I were hidden on a French farm for three full months.” Eventually her parents arranged passage for the girls on the refugee ship and said goodbye.
When she met Alan in 1943, Massing had just been placed in a foster home down the street from his house. “I was a very angry youngster,” Massing says, “but I used that anger for positive things.” She repeatedly wrote to Eleanor Roosevelt, asking for her parents to be given visas to come to the U.S. Still, it would be six years before she would see her parents again. “It was a very painful time for me.”
When Massing was 16, she asked Alan to go with her to a dance: “I belonged to a sorority that made it okay for girls to ask boys for dates.” He said yes and four years later, they married. Alan went to medical school, and the couple had two children, finally settling in California.
Parkinson’s had hit Alan’s family repeatedly. Five people on his father’s side had the disease including Alan’s younger brother, George. But Alan, who became a successful dermatologist, seemed to be thriving. “He did very well,” says Massing. “I’m very proud of my husband.”
Massing, on the other hand, was having trouble dealing with her past. But her artistic talent came to the rescue when she took up sculpting: “I created a series of sculptures, which encapsulated my experiences during the war. And that made it possible for me to start working on a manuscript. It took me all those years to admit what I had been trained by my parents to conceal: a hidden Jew.”
In the 1990s, Alan started to show signs of Parkinson’s. He had noticed he could no longer smell the pungent odors that accompany cauterizing procedures he did in the hospital. “We thought his psychology had just decided to turn off his nose,” Massing recalls.
One day, when Alan was walking next to his brother George, Massing’s sister-in-law turned to her and said, “Uh-oh, I think Alan has Parkinson’s, too. His arm is hanging limply by his side.” Her hunch proved to be right: Alan was officially diagnosed with Parkinson’s in 2002.
“Alan took it much better than I did he is a Superman,” says Massing. “I was absolutely devastated. And I thought, ‘Why do we deserve this?’ But again, I put that anger into things that made me feel better.”
Massing started a gym near their home in Laguna Woods, Calif., called PEP4U, for people with Parkinson’s. It hosts exercise classes three days a week. “We also have a support group for caregivers,” she says. Massing takes Alan to the gym and often makes artwork for its events.
Alan is now in the advanced stages of Parkinson’s. “He has a lot of trouble walking, his speech is getting softer, and his writing is illegible,” Massing says, then adds with a laugh, “But when he was a practicing doctor, his handwriting was not legible, either!”
Massing copes with her own stress of being a caregiver by sculpting, helping with PEP4U, and writing. In 2009, Massing finished a critically acclaimed memoir called Chased by Demons. “I finally felt comfortable telling my story,” she says.
Massing loves seeing how people with Parkinson’s can flourish with the right care and support. “When I see people improve, I feel very good about it. It addresses some of the anger I felt at what I was given and what my husband had to endure,” she says. “That’s my reward.”
Originally printed in MoreThanMotion, Spring 2018.