Emma Heming Willis has been nothing if not heartbreakingly candid in the nearly two years she’s been caring for her husband in his dementia. Bruce Willis was diagnosed with Aphasia in 2022, and his condition progressed to Frontotemporal Dementia early in 2023. While she clearly does not naturally seek the spotlight, being Bruce’s care partner has compelled Emma to publicly advocate for FTD awareness and the families affected by the disease. In yet another instance of empathy and searing honesty, Emma penned a letter for Maria Shriver’s Sunday Paper, in which she shared lessons she’s learned during this time. She also acknowledged the guilt she feels over having resources other families don’t:
Lesson No. 5: There is power in giving back. Recently, I met someone who had just learned about FTD in her life. When I first learned about the condition, I didn’t have someone in my corner who understood this experience. The fact that I was able to help connect this woman to the right information and resources was a moment I won’t forget. Even though I can’t change her situation, I can help guide her, tell her where to start, and help her feel a little less lonely.
I struggle with guilt, knowing that I have resources that others don’t. When I’m able to get out for a hike to clear my head, it’s not lost on me that not all care partners can do that. When what I share about our family’s journey gets press attention, I know that there are many thousands of untold, unheard stories, each of them deserving of compassion and concern. At the same time, I see that what I share matters to others who may be struggling, and in a small way makes them feel seen and understood. I want people to know that when I hear from another family affected by FTD, I hear our family’s same story of grief, loss, and immense sadness echoed in theirs. It’s important to me to be an advocate on behalf of those families who don’t have the time, energy, or resources to advocate for themselves.
[From Maria Shriver’s Sunday Paper via Just Jared]
It is refreshing to have a celebrity acknowledge their privilege and really mean it. Nothing about Emma’s language feels like prescribed PR lingo. It’s about as far from that as you can get. I just want to give her the biggest hug! Her pain is real and it is valid. In a more perfect world, the focus would be not on resenting those who have more resources, but on figuring out how to make those resources available to everyone. I believe Emma is trying to do just that — to give back to the community that has given her strength, in ways that she can. And all while still caring for her husband. (LaineyGossip had a thoughtful piece yesterday on this topic, discussing Michael J. Fox and Tracy Pollan.)
I thoroughly recommend reading Emma’s piece in full. She organizes her thoughts into six main lessons she’s learned, the connecting thread being: talk about what you’re going through and find your community. They are vital lifelines. She ends with saying “As much as I grieve this experience daily — as I know so many others do — I also know that it has made me stronger than I ever thought possible.” Oh, yes. Whatever your specific hurdle is, life has a way of making you discover your own strength. I have no doubt that Bruce is proud of her for that.
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