While caring for her husband Bruce amid his frontotemporal dementia (FTD) diagnosis, and raising their daughters, Emma Heming Willis has also decided to be a advocate for FTD patients and families. She wants to pay forward all the support and resources she’s received. Emma has made it clear that, unlike the actors in her family, being a public advocate is outside her comfort zone. But the cause of helping others understand aphasia and FTD is worth stepping out of her shell. What it shouldn’t have to involve, though, is needing to tell the media at large to stop making up “stupid headlines” about Bruce and how he’s doing. Yet that’s how Emma spent her Sunday:

“The headline basically says there is no more joy in my husband. Now, I can just tell you, that is far from the truth,” Emma said as she began the video. “I need society — and whoever’s writing these stupid headlines — to stop scaring people. Stop scaring people to think that once they get a diagnosis of some kind of neurocognitive disease that that’s it. ‘It’s over. Let’s pack it up. We’re — Nothing else to see here. We’re done.’ No.”

She then said that her family’s experience has been the “complete opposite of that” amid Bruce’s frontotemporal dementia (FTD) diagnosis.

“There is grief and sadness. There’s all of that. But you start a new chapter,” Emma said, adding that the new chapter is filled “with love, it’s filled with connection, it’s filled with joy, it’s filled with happiness.”

“That’s where we are. So stop with these stupid headlines. These stupid clickbaity things that freak people out. Stop doing that. There’s nothing to see here, okay?” she continued.

In the caption, Emma reflected further on the inaccurate reporting she’d seen as she encouraged media outlets to be “mindful” of how stories about dementia are framed.

“My experience is that two things can be true and exist at the same time. Grief and deep love. Sadness and deep connection. Trauma and resilience. I had to get out of my own way to get here but once I arrived, life really started to come together with meaning and I had a true sense of purpose. There is so much beauty and soulfulness in this story,” she wrote.

“Here’s what I’ve come to understand is that we are being educated by the wrong people. People that have an opinion versus an experience. People that have not taken the time to properly educate themselves on any kind of neurocognitive disease. Why can I be so bold and say that? Because I see headline after headline and blurbs of misinformation,” Emma continued.

She added: “I’m not even talking about my family, I’m used to the craziness of these farfetched headlines and stories. I’m just talking about baseline dementia awareness and what’s being fed to the public. You wonder why anxiety and depression is up in our society. I honestly think part of it has to do with this kind of clickbait, how things are framed and pushed out to us and how we have a split second to take that information in. Man, it’ll do a number on my psyche.”

[From People]

Emma found a way to refocus the topic back to FTD education and awareness, but again, she shouldn’t have to deal with this. The only people who have the authority to speak on Bruce’s condition right now are Emma, Demi Moore, and his daughters. And their public comments of late have been filled with love, fondness, and even joy. Yes, the relationships have changed, but like Emma says, love and grief can coexist. By contrast, someone who’s never met Bruce wrote a negative, clickbaity headline about him. It’s tasteless, not to mention hurtful for those close to Bruce and for family members of people with dementia.



Photos credit: CPA, PacificCoastNews / Avalon, Media Punch/INSTARimages.com, Backgrid and via Instagram