We Used to Dance: Loving Judy, My Disabled Twin

by Debbie Chein Morris

Debbie and Judy are twins—but Judy was born with cerebral palsy, and Debbie was not. Despite the severity of Judy’s brain damage, her parents chose to keep her at home with her three siblings, and ultimately Judy lived at home with them well into adulthood. Even after her father died, she continued to stay with her mother, her care augmented by a succession of home attendants—until, that is, her doctor told Debbie that Judy’s care at home was wanting and she would not survive without nursing home care.

In We Used to Dance , Debbie tells of the emotional trauma she experienced when she was forced to place her sister—a sister unable to sit, stand, eat regular food, feed herself, use a bathroom, or make her needs and desires known through speech or other means—in a new and strange environment. Following Judy’s life in her new home as well as her past relationship with Debbie and the rest of their immediate family, this is a raw, personal memoir of love and guilt―and, ultimately, acceptance.

Genres: Nonfiction

256 pages, Paperback

First published October 24, 2023

Reviews

[Liralen · Rating 3 out of 5]

We used to dance, my sister and I. There we'd go, swirling around the room, both of us laughing with glee. Of course, we were younger then; she, more relaxed and I, more able to hold her in my arms. Oh, how we dipped and glided, so comfortable was she in my arms. Those were happy days when we used to dance. (loc. 34*)

Debbie and Judy were identical twins, the babies of the family, in some ways the best of friends, but Judy's cerebral palsy kept her between wheelchair and bed while Debbie grew up and moved away. Unusually for the time, their parents kept Judy at home—knowing that they would be able to provide a love and care that an institution could not—but as their mother aged and it became harder and harder to care for Judy at home, Judy's doctor gave them an ultimatum: it was time for Judy to go into a nursing home.

We Used to Dance is Morris's story of that transition, one neither she nor her mother nor Judy wanted. Morris is clear-eyed in her assessment of the situation: yes, Judy's care at home was no longer the same quality it had been when their father was alive or their mother younger—but she had the benefit of living with a family who loved her whole-heartedly and unconditionally, and from the beginning of the book Morris is asking hard questions about the point at which the importance of happiness supersedes that of longevity. Morris's conclusions won't be for everyone, but it's clear that she and her mother—and, though they were less involved in Judy's care, the rest of the family—wanted what was best for Judy, as did Judy's doctors. It's a terribly hard place when "best" is subjective, and the person cannot be a full participant in that conversation.

Morris doesn't include concrete recommendations for other caregivers (though the final copy might be different), but if you take away one thing from the book I hope it will be this: I didn't want to rock the boat. What I didn't realize then was that it was my right to rock the boat if I felt things weren't up to par. I forgot that we are the voices for those who cannot speak for themselves. (loc. 746)

Thanks to the author and publisher for providing a review copy through NetGalley.

*I read an ARC, and quotes may not be final.

[Kelly · Rating 4 out of 5]

Thank you to NetGalley and the publisher for providing this book in exchange for an honest review.
What an incredible story. The dedication the author has to her sister was amazing.
The author writes with such honesty and emotion, especially the last few chapters. It may be easier for us on the outside to judge her decisions but putting yourself in her shoes, it really shows the tough, emotional decisions she had to make in the best interest of her sister.