Emma Heming Willis wishes the media would do better in reporting on her husband and their family life since his condition progressed from aphasia to frontotemporal dementia (FTD).
“It's Sunday morning and I'm excited,” she wrote in an Instagram story today. “I just got trapped. I'm just scrolling down the page, minding my own business, and I just saw a headline that was about my own family. The title basically says there is no more joy at my husband's house. Now I can just tell you that this is far from the truth.
Heming Willis went further.
“I need society and whoever writes these stupid headlines to stop scaring people. Stop scaring people into believing that once they are diagnosed with a neurocognitive disorder, “that’s it.” It's finish. Let's pack our bags. There's nothing else to see here, it's over. No, it's quite the opposite, okay?
Heming Willis admitted that there is “grief and sadness,” but it is not the dominant status.
“You start a new chapter and that chapter is full – let me just tell you what it is. It’s filled with love, it’s filled with connection, it’s filled with joy, it’s filled with happiness,” she said.
Heming Willis documented her husband's journey on social media, showing him at amusement parks, atop the “Die Hard” building and in candid photos at home.
She blamed the lack of education on stories she disliked.
“We are being educated by the wrong people. People who have an opinion rather than an experience. People who have not taken the time to properly educate themselves about any type of neurocognitive illness. Why can I be so bold and say that? Because I see headline after headline and presentations of misinformation. I'm not even talking about my family…I'm just talking about basic dementia awareness and what's presented to the public. You wonder why anxiety and depression are on the rise in our society. Honestly, I think part of it is this kind of clickbait, the way things are presented to us and presented to us and the way we have a split second to take in that information. Man, this will take a toll on my psyche.
She concluded in the post's caption: “To whom it may concern, be mindful of how you present your story (sic) to the public about dementia and dig deeper. There are so many great organizations and specialists to contact in this area so you can really do your due diligence to polish your story and content.
Heming Willis is working on a book for Penguin Random House's The Open Field imprint. Its release is scheduled for 2025.