We Used to Dance: Loving Judy, My Disabled Twin

How does one cope with the complexities of unwarranted guilt? That is a crucial question that Debbie Chein Morris is striving to answer in her poignant memoir, We Used to Dance: Loving Judy, My Disabled Twin.

Morris examines in depth her relationship with her identical but severely disabled twin, Judy, who was born with cerebral palsy. Judy’s symptoms included severe spasticity of all four limbs, her trunk, and her face. Her entire life was confined to her bed or a special chair that supported her head from drooping. Communication was limited in Judy’s world. Although she could never speak, she had some degree of understanding and even developed her own way of saying yes and no with certain movements, gestures, or vocalizing. She often cried when uncomfortable or frustrated. And if Morris asked Judy the right questions, she could eventually determine what the problem was that upset Judy. Her twin sister was there, but tragically out of reach. And Morris had a lifelong wish to free her twin from the confines of that limited body.

As a younger person, Morris constantly prayed that she could trade places with Judy—but with the stipulation that she would know how to master mobility as Judy, and thus be able to make Judy whole and robust. Then the two could stroll through life almost as one person, connected by the uniqueness of being identical twins. Perfectly capable, with no disabilities.

The world Morris longed for was brought to an abrupt halt when the twins were 53. By this time, Morris had moved away from home, attended college, married, raised children, and was living a full life. Judy remained at home with her mother as caretaker. Judy’s doctor determined that she would not live another two years in that circumstance, and threatened to intervene unless Judy was placed in a nursing home. Morris found herself solely responsible for making the decision to send Judy away forever from the only home she’s ever known. How Judy—and by extension, Morris—adapts to this life-altering decision and move is examined in depth in this memoir.

Morris personally takes the reader inside her heart—and the nursing home with its staff and residents—as she grapples with this new world while at the same time navigating her aging mother’s frail condition. Morris was now in the position once occupied by her mother: Judy’s sole caretaker. The mental, physical, and emotional toll exacerbated by Judy’s condition is thoroughly felt by descriptive, sometimes harrowing, scenes. The daily visits to Judy in the dismal nursing home environment take their toll on the author.

This is a brave memoir that exposes feelings one would prefer to keep secret. Yet Morris adeptly takes this journey without succumbing to sentimentality. Instead, she writes with honesty of what she was faced with: the harsh reality of aging while disabled, and the unimaginable strain placed upon families with severely disabled members. Interspersed are journal entries recording the depth of Morris’s anguish about committing Judy to this fate.

We Used to Dance is filled with regret, self-doubt, second-guessing, remorse—and forgiveness. Certainly Morris is in line for self-forgiveness. This is a must read for anyone facing life-altering decisions for a beloved family member. It will grasp your heart and you will certainly feel the squeeze.