The wife of Bruce Willis, Emma Heming says media and public perception of neurocognitive diseases needs to shift, people struggling with these can still enjoy a good quality of life.
Emma Heming is speaking out for her husband Bruce Willis and all of those people out there struggling with neurocognitive diseases after a media report that the 'Die Hard' star had "no more joy" in his life.
Taking to her Instagram on Sunday, Heming said, "The headline basically says there is no more joy in my husband. Now, I can just tell you, that is far from the truth."
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View StoryShe went on to emphasize, "I need society and whoever's writing these stupid headlines to stop scaring people." It's the narrative that this kind of diagnosis is the end that she doesn't want to see.
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"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, nothing else to see here, we're done,'" she continued. "No, it's the complete opposite of that."
She acknowledged that it's a difficult diagnosis to live with, for the patient and their loved ones, with "grief and sadness," but that's not all it is. There's also love, connection, joy, and happiness.
"My experience is that two things can be true and exist at the same time," she wrote as part of her caption to the post.
She admitted that it took her time to come to this place of acceptance and understanding. "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," she wrote. "There is so much beauty and soulfulness in this story."
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View StoryShe argued that the public is being educated by people "that have an opinion versus experience." That's why she's been so public about her life with the beloved actor after his diagnosis with frontotemporal dementia and aphasia.
"Why can I be so bold and say that? Because I see headline after headline and blurbs of misinformation," she continued, emphasizing that she's not just talking about what's being written sensationally about her family.
"I’m just talking about baseline dementia awareness and what’s being fed to the public," she wrote. "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."
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View StoryShe concluded with a plea to the media perpetuating these stories. "Please be mindful how you frame your story’s to the public about dementia and dig deeper," she wrote. "There are so many wonderful organizations and specialist within this space to reach out to so you can really do your due diligence to iron your story and content out."
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She then posted a follow-up video for the caregivers, who she says have it hard enough already without this additional stress. "These headlines that paint this constant doom and gloom picture of dementia are harmful to them as they try to build their support unit around them," she captioned this second video," she captioned it. "Or could sway a person who is wanting to help, the other way."
In the video, she said that these headlines are "harmful to the next care partner and the person diagnosed with dementia. Because when someone outside their inner circle reads something like this -- and these headlines are painted in such a dark and gloomy way -- well, it makes that person feel less than confident to show up for the care partner and the person diagnosed."
"I'm not saying that dementia is rainbow and unicorns. It is not," she continued. "But there is also another side of it that is so beautiful. And I just think that when people are writing about dementia, I think they need to show all sides of it; not jus focus on this dark cloud of it, because dementia is so much more than that."
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View StoryHeming has been very public sharing her husband's story and the support she's gotten from his adult children Rumer, 35, Scout, 32, and Tallulah, 30, as well as their mother -- and his ex-wife -- Demi Moore. Heming and Willis share two children, Mabel, 11, and Evelyn, 9.
"I love you so much," Tallulah commented on Heming's first post.
As Willis' family has rallied around him amid his dementia diagnosis, the family of Wendy Williams, who was revealed to have the exact same diagnosis, is fighting to be a part of hers after Wells Fargo bank took her to court and saw her placed under a guardianship in New York.
You can see their story unfold in the Where Is Wendy Williams? docuseries, which we covered in the stories below.