The letter from Bruce Willis’s family bore seven names — Emma, Demi, Rumer, Scout, Tallulah, Mabel and Evelyn — and a picture of the actor smiling on the beach. You could almost mistake the letter for one of those holiday circulars some families send around, but for one detail: It appeared on Thursday on the website of the Association for Frontotemporal Degeneration, a group devoted to a condition with which Mr. Willis had been diagnosed. His family said he would want to use his visibility to help bring attention to others suffering from the disease.
“Bruce has always found joy in life, and has helped everyone he knows to do the same,” the family wrote. “Your continued compassion, understanding, and respect will enable us to help Bruce live as full a life as possible.”
Reading that beautiful letter, I felt awe at their bravery, as well as their unity as members of a complex family. I felt sorrow for Mr. Willis. I also felt a tug of fear about the consequences of going public — just as I felt in 1994 when my father told the nation that he had Alzheimer’s.
It had been five years since he had left the White House, and a couple of weeks since I myself had heard the news of his condition. I had been overwhelmed with a storm of emotions: grief, fear, a resolve to be there for my father through it all. But at that time it was a family matter. No one had mentioned making his diagnosis public, and I hadn’t asked.
Then one afternoon the phone rang in my Manhattan apartment. My mother rarely called at that time of day, morning in California, but she said she was glad she reached me because my father had written a letter to the country and within a few hours it would be released. She said it was his idea, and she was so proud of his decision.
I remember looking down at the street below — people hurrying along on their way to somewhere — and feeling time slow down. But I wasn’t surprised. Of course he would want the country to know. His love and loyalty to America ran deep. And I shared my mother’s pride in him for being so honest. She said he had just sat down, taken pen and paper, and begun writing.
“My fellow Americans,” he wrote, “I have recently been told that I am one of the millions of Americans who will be afflicted with Alzheimer’s disease.”
He noted that he and my mother had previously shared the news of their respective cancers, and hoped that their disclosures helped others seek care for their own illnesses. Then he acknowledged with regret that the burden for diseases like his can fall heavily on the family.
Signing off, he wrote words that I will never forget: “I now begin the journey that will lead me into the sunset of my life.”
I was amazed by his bravery in telling everyone he had a disease that most people didn’t even want to talk about in those years. To my knowledge, no public figure had ever before revealed, in first person, that he had dementia.
But I had no clue what the world’s reaction would be. I left my apartment and went for a walk, to sink into the last bits of privacy I would have before a journey I knew nothing about.
As my father’s disease progressed, there would be a swell of sympathy and support from total strangers. Not everyone, however, reacted with compassion. I learned to ignore the hurtful comments and the mockery, which continued to his death in 2004, at age 93.
Bruce Willis and his family may have a harder road to travel than my family did. Frontotemporal dementia is radically different from Alzheimer’s. People with the condition can become unrecognizable in their outbursts, their aggressive and voracious behavior. Frontotemporal dementia has two main variants. One has to do with behavior, and the other, primary progressive aphasia, has to do with communication. The behavioral variant is the most common and the most upsetting. The patient can shed all boundaries, often becoming terribly inappropriate. But the language variant, with which Mr. Willis has reportedly been diagnosed, is also traumatic, leaving the patient unable to use or understand language.
When I started Beyond Alzheimer’s, the support group that I ran for six years, a woman in her 20s came in and talked about her father, a man in his 50s who had frontotemporal dementia. He had become so unpredictable and violent that his family had to place him in a facility, but he was so disruptive to the other residents, all of whom were older, that he was at risk of losing that home, too. That’s the other curse of frontotemporal dementia: It usually strikes people when they are younger, often in their 40s or 50s. Trying to offer this young woman comfort or insight, I felt an overwhelming helplessness, a tiny taste of what her family was experiencing every day.
My hope for Bruce Willis’s family, as they go down this unpredictable and heartbreaking road, is for those around them to know that simply being there is often all you can do. There is no sidestepping the grief, the pain, the helplessness. There is just, maybe, a human wall of comfort to lean on.
I experienced that, I felt it — the concern and compassion of strangers who took time out of their lives to think about us, to care about how we were doing. And there are others whom the Willis family will never meet, other families who have been invaded by this cruel disease, who today feel a little less lonely because of the decision to announce a diagnosis that rips your soul apart.
Patti Davis, a daughter of President Ronald Reagan, is the author, most recently, of “Floating in the Deep End: How Caregivers Can See Beyond Alzheimer’s.”
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