When my sister, Deborah Blackwell, was hired to head up one of Disney’s cable networks in 2001, she bought her dream house on Mulholland Drive. Deborah said its ten foot tall doorways made her feel like Alice in Wonderland. Mexican floor tiles the color of sun-warmed clay stretched throughout the house and onto the patio and pool area, blurring the lines between indoors and out. My sister filled her house with books and friends, paintings and music. And on every surface, snapshots in silver frames celebrated the people in her life.
In 2009, I filled a suitcase with a dozen of these memories, wrapping each with the sweaters and flannel nightgowns Deborah would need in Vermont. When I closed the door behind us to leave for the airport on the balmy January day, I felt as though I was taking her life away. Deborah knew she was leaving this place she loved. She knew she was flying to my home in Vermont. What she didn’t know–what I couldn’t tell her–was that she would never be coming back.
My intelligent, accomplished older sister was gone before we even knew she was sick. Deborah has Frontotemporal Degeneration (FTD), an insidious dementia that targets adults in their 40s and 50s. The cells in the part of her brain that control behavior and decision making, that control the very essence of who she is, are dying.
And there is no cure.
As Deborah’s sister and guardian, I am writing a memoir about our experiences navigating the cataclysm of FTD. The pieces I’m sharing with blog readers are interludes from the main story, which begins with the onset of Deborah’s disease. I hope these reflections will raise public awareness of FTD, as well as touch other families facing similar challenges.