Dear Hollywood

We tend to write letters if we are passionate about how terrible our travel experience was, or why our senators should listen to us, or reasons that hospice needs reform. In this case, we need to tell Hollywood how they continue to get it wrong when it comes to dying.

Dear Hollywood,

We wanted to raise an issue with you. We don’t mean to criticize, but you need to know that when it comes to dying on TV and in movies, you’ve got it all wrong. We know that this is a tricky subject and you’re trying to create touching stories, but in many cases, we are afraid that you’re misleading people. Plus, the inaccurate picture you’re painting has simply started to rub us the wrong way.

Prior to our experience of watching our sister die from cancer, we were just like many other blissfully unaware people watching things like “The Bucket List” - two old men break out of a cancer ward and go on adventures around the world. Ok, sure. 

But more recently, we were watching a popular TV show - "This Is Us" - and couldn’t finish watching the episode. And it’s a great show, stressing the importance of family and siblings. We are fans. But we couldn’t keep watching. In typical Hollywood fashion, one contained in an alternate reality, the man who is dying takes one last road trip with his son, to hit up his old stomping grounds, making last visits to places that he loves.

We couldn’t watch it because it angered us. Dying people are often frail, tired, weak, and, frankly, feeling pretty crappy, so getting in a car to drive hours and hours is not what they want to do, nor do they have the energy for that. Beyond it being unrealistic, it perpetuates the message that those who are dying should do just that and, if they don’t, they have somehow submitted too easily to dying or not lived their life to the fullest.

We felt pressure to do something grand with our sister as she faced the end of her life. A few well-meaning people even suggested that we take a vacation together. (They must have watched "My Sister's Keeper" too often and remembered that ridiculous and impractical beach scene.) But it was not feasible. It also caused us to question how to make the end “meaningful.” Yet, when we look back, we have no regrets. There was meaning there. Despite your portrayal of dying as an adventure-seeking opportunity, a time to plan impromptu trips, we had countless worthwhile moments spent in our PJs on the couch, laughing over a comedy, hugging, crying, and enjoying quality time with our dear sister. Those moments mattered- being together- not time spent trying to coordinate a trip to jump out of a plane.

Why is it that the fantasy of movies features one last gesture, one last big hurrah, one final trip? This concept of a “bucket list” is even a social media craze - there’s a hashtag for it, #bucketlist. We get that anyone wants to feel like they have had adventures and accomplishments, lived a full life, but maybe we can leave the dying out of this? Uncouple the bucket list idea from the end of life stage. Let’s call it something else - maybe a “full life list.” #fulllifelist. Yes, movies and TV are entertainment and showing us the reality of dying is anything but entertaining, but misrepresenting it is not ideal either.

As this article in The Guardian teaches us, a bucket list risks chasing the future and not coping with the reality of the present, or facing death. Psychologist Linda Blair brilliantly explains: "But if you're constantly living in the future, ignoring what's going on right now because you're shooting for goals, which happen so quickly that they're over, and then you have to chase another one, you're not really living." Perhaps your focus in Hollywood should shift toward living life how one wants, pursuing those items on a wish list as an everyday goal, and cherishing and respecting one's relationships. That way we won’t all be panicking to have a final, meaningful moment and we won’t put more pressure on those who are dying or their loved ones to try to manufacture meaning at the end.

Our feelings were echoed recently by comedian Patton Oswalt who tragically lost his wife last year and who told NPR how pop culture gets it all wrong when it comes to grief: "Just look at super heroes, he says — their motivation is often rooted in loss that 'leads them to travel the world learning martial arts and doing CrossFit and getting really cut,' Oswalt says. 'And that's not been my experience.'"

Are you thinking that we should already know this about you, Hollywood? Is it obvious that you don't always accurately reflect reality? Fine, we don't always want you to. We want distraction and comedic relief, too. But other people don't seem to know the difference either, otherwise we wouldn't have gotten some of the questions about our plans for making a beach trip in our sister's final months. Our purpose in writing you is to encourage you to continue to entertain us, continue to create touching stories, but that you also consider the reality of end of life. The reality for most is that the insurmountable sickness and sadness involved does not allow much energy for adventures. And yet, there is meaning in the everyday moments with loved ones, and that is a lesson that has been lost.

Sincerely,

Jessica and Shane

Nov. 10, 2016 Caregiving and Grief News Roundup

November is National Family Caregivers Month! There is even an official proclamation from President Obama. We are reminded of our prior post, A Caregivers "To Don't" List, and hope you are finding time to relax. Let us know how you are celebrating or if you are thinking of a special caregiver this month. We are always celebrating siblings! Other great organizations are also recognizing this special month, such as WorkingDaughter.com and National Alliance for Caregiving.

This new business “Wellthy” is brilliant and just received $2 million in seed funding. Families are actually assigned a coordinator who helps with various overwhelming tasks such as dealing with insurance claims, refilling prescriptions, and arranging specialist appointments. We love what Lindsay Jurist-Rosner, founder of Wellthy, says at the end of this article: “Starting a business is hard work,” she says. “But after the experience my family and I have had, starting a company is nothing.”

This article offers an interesting perspective and plenty of facts and links to information about caregiving costs and need for more support.

Read about the honest conversation featured on a Cosmopolitan.com podcast that includes one of our favorite authors, Nora McInerny Pumort (“It’s Ok to Laugh (Crying Is Cool Too)”), and the CEO of a helpful website featuring stories of loss, Rebecca Soffer (ModernLoss.com), who discuss loss and how to help yourself or a friend.

As we’ve already said, we love Emily McDowell’s greeting cards and appreciate her humor and sincerity. And it is perfect that she has written a book - "There is No Good Card for This: What to Say and Do When Life Is Scary, Awful, and Unfair to People You Love" - with empathy expert, Dr. Krowe. We can’t wait for this book to be available in January, but for now we wanted you to get as excited as we are about it.

The Guardian shares insights from readers about what death and grief means to them.

This article describes a recent stand-up set by comedian Patton Oswalt, who opened up about his grief over the sudden death of his wife with humor and honesty.