How “Up’s” Carl and Ellie Helped Me Cope With Grief During The Holidays

It’s Christmas. Since I’m technically Jewish, it shouldn’t matter all that much, and this year Chanukah and Christmas overlap. Christmas is a big deal to me and always has been. Since I was a child I was always captivated by the colorful trees and fun decorations. I loved coming into the city with my mom to see the beautiful store window displays and the giant snowflake on Fifth Avenue. In a hectic city like New York, the holidays bring out a kinder, prettier, more whimsical side of people. I like that. For me, Christmas is the time of dreams and dreaming, of taking the time to reach out to people who are always in your hearts. Chanukah is a holiday and I do light the menorah and respect the traditions, but for me, it isn’t a season or a tone of the year in the same way as Christmas. I watch the Hallmark movies and yearn for what in my mind Christmas is all about and what it looks like. With Ben, I was able to have Christmas, even if it was simply wrapping gifts that he was bringing to his kids. Without people with whom I share my quirky sense of holiday traditions, I distract myself with a whimsically decorated apartment and the magical sights of the city, but I often feel the weight of a life that still frequently feels lonely and ungrounded.

Memories play an important part in all of our lives, for better and for worse. Now, in addition to my memories of many fun Christmases spent with Ben, I also reflect on how I have spent the holidays since Ben and my dad became ill and since they have left the world. My dad died in February 2014, and the holiday season that year was seen from the windows of the train and car service to and from the hospital and then the hospice. When Ben was ill and ultimately homebound, I decorated the apartment, which added some fantasy to an otherwise depressing environment cluttered with life that had been pushed to the side to accommodate medical supplies and equipment because ALS took over literally and figuratively. Those memories continue to fill my mind at this time of year, though I continue to decorate and call upon my holiday spirit. I put Ben’s favorite ornaments and decorations where he liked them. Since he was confined to his desk and chair all day, it was important to place things where he could see and enjoy them. The first ornaments I place are the photo ornaments from Walt Disney World. I love those ornaments because we spent so much time choosing the precise photo to represent each trip, even though the photos also reflect the physical changes in Ben that resulted from the ALS. Now, as I place the ornaments in those same locations, I talk aloud to him about it, often smiling. People might think I’m crazy, and maybe I am, but I know that he hears me.

Some of the ornaments that Ben especially liked to see were Sully, Buzz, Mulan, our photo ornaments.

Two years after Ben “left,” as he called it, I got my first new ornaments during my visit to London. I chose lovely ornaments from Harrods and Liberty, but they didn’t feel right on the tree because they weren’t ours and most of the ornaments were Disney ornaments that we chose together. At that time, the ornaments unnerved me because, although they represented a favorite place and a milestone in my life that I was once again able to travel without caregiving worries and responsibilities, I also felt that they conveyed that I had stopped grieving, which was not true. It continues to be a balancing act to deal with grief that never really goes away, and coexisting with those feelings but engaging with life, finding joy again without guilt and anger.

Last year, I purchased my first Disney ornament without Ben. It was a Mary Poppins ornament and I know that he would have liked it. Mary Poppins is very dear to my heart since childhood. I love the ornament, but I admit that it carries the burden of always being seen as the first Disney ornament of which Ben was not a part. Still, I have to remind myself that healing happened- until that point, I had not been able to consider new Disney ornaments. I realized that I was ready for my tree to evolve into a representation of all the beautiful memories that Ben and I created, and of the new ones that I am creating, with the hope and wishes for the magic that Christmas seems to signify for me.

The scene with the penguins was always a favorite. Now the ornament is next to our photo ornament and one of Ben’s heroes, Buzz Lightyear.

When I was in Walt Disney World this past October, I purchased an ornament from Mickey’s Not So Scary Halloween Party. I have had it hanging on a lamp and thought I would put it on the tree. I put it on the tree and removed it several times. Halloween and that party were our most special event and it felt almost disrespectful to put the ornament on the tree, as if it was a slap in the face to Ben that I could go to the party without him and then put a reminder on our tree. Finally, I decided to keep it on the tree because it accurately represented the conflict of struggling with his loss, carrying our wonderful memories with me and continuing to live and enjoy things we shared while acknowledging that they will never be quite the same.

This year, I spotted a very sweet ornament of Carl and Ellie from Up. It was a memory of early in their relationship, captured within a clear glass ball. That ornament touched my heart. Up is a movie with powerful messages about loss, grief and continuing to live. This ornament encapsulated for me the message that I have so many beautiful memories with Ben, and my tree is one way that I can visually display and recall those memories. My heart is fragile, like the glass that captures the memory of Ellie and Carl, but the memories are vivid and strong and beautiful, and they sustain me. The treasured memories surround each other and are, and will continue to be, joined by new memories. They are all precious parts of my story.

I think about Carl looking through Ellie’s scrapbook and reading her final message, “Thanks for the adventure. Now go and have a new one.” Here is the clip. I have put the ornament of Carl and Ellie on my tree as a reminder that although holidays are harder times without Ben, and there is definitely a void, adding new ornaments represents a way that I am coping with loss and finding new adventures while treasuring Ben and the memories we shared.

“Up” Copyright © Walt Disney Pictures, Pixar Animation Studios 2009

It has been more than 4 years since Ben left this world. I say that because I want anyone struggling to know that the healing has not been happening quickly for me, but I have noticed and assessed it. We all grieve in different ways and in different timeframes. Sometimes, we see progress in very subtle ways. We have good and bad times. Sometimes we need the non-judgmental support of loved ones. Blogging and journaling have helped me to identify how I have coped, or not. I wish for everyone to have a holiday season in which they feel loved and supported and that allows them to embrace in some way good memories and the hope of new ones.  Please reach out in the comments or privately if you would like to share your strategies for coping with the holiday season.

The December page from my calendar is filled with our memories from Christmas at Walt Disney World in 2007.

Walt Disney: A Legacy of More than Animation (12.5.1901-12.15.1966)

Walt Disney, Walt Disney World

Walt Disney’s legacy lives on so vibrantly and timelessly in so many ways that it’s hard to believe that today, December 15, 2018 marks 53 years since he left this earth. He’s been a part of my life for as long as I can remember. I have such vivid memories of my mom talking about her favorite Disney movies and how she loved Mickey Mouse from the time she was a child. Mary Poppins was the first movie I ever saw in a theater. It just amazes me how Mickey and his friends touch the hearts of generation after generation. Now, I love to read about him and get a glimpse into his artistic vision and the building of his business enterprises. His belief in himself and commitment to his art are things that we can all learn from. I believe that Walt Disney’s words of wisdom and legacy will live on, as Buzz Lightyear would say, “to infinity and beyond.”

My blog was inspired by the way that I was affected by Disney films, characters and lyrics in light of caregiving and loss. As much as I love to be in NYC during the holiday season, I do have a sense of melancholy. So many of my more recent holiday memories have sadness. My dad was in the hospital and then a hospice during the holiday season of 2013 and the lights I saw were from the windows of a car that took me home from visiting him or the train to and from Long Island. When Ben was ill we couldn’t go together to see the holiday displays and I rarely had the time to go on my own. When I did have a little time, I either felt guilty or couldn’t really enjoy anything. It took a couple of years before I could bring myself to visit the tree at Rockefeller Center and look at the beautiful store displays.  I guess these memories loom, although just today I went to Rockefeller Center to admire the tree and other holiday treats.

Today seems a perfect day to honor Walt’s memory by reflecting on some of his words of wisdom.  They help me to look to the future with optimism, and I think that’s especially significant as we approach a new year. Also, they make me think about the concept of a legacy. My parents left me with a legacy of kindness, loyalty and compassion and always having a sense of humor and whimsy. I hope that I will always honor them and leave a similar legacy.

“That’s the real trouble with the world. Too many people grow up. They forget.”

ALS, Walt Disney World, Lilo and Stitch

The very first time we met Stitch, October 2006!

As someone who still has a lot of my childhood dolls and can’t resist adding new ones to my collection, it is obvious to everyone who knows me that I completely embrace the idea that you need to hold on to your inner child.  As I’ve said, my inner child is very much at the forefront of who I am. For me, watching a Disney film, and imagining a fairy or fairy godmother at my side, also allowed me to escape the realities of caregiving and loss. Ben always said that he loved Walt Disney World because you simply forgot your problems. With a diagnosis of ALS, his problems were huge, but immersed in that fantasy land, he was a big kid having a wonderful time, even despite his challenges. For him to be able to feel that sense of joy and excitement was a gift. Walt Disney envisioned and provided that magical setting. I never want to lose the attitude that allows me to step right into the fantasy the way I did with Ben. I never want to stop wishing on stars or forget the wonder and delight that I had as a child.

“Why worry? If you’ve done the very best you can, worrying won’t make it any better.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2011- Mickey’s Not So Scary Halloween Party. I held Ben on one arm and Minnie held him on the other!

This is absolutely true. Alas, I am a worrier, and I have to work on this, but Walt was right. I can’t say that any of my worrying helped, although perhaps thinking through worst case scenarios may have helped me prepare for a variety of situations. I’ve heard that worrying burns calories, but I’ve seen no indication that this works! I worry now about my future, particularly without much family. I worry that I will never find love again and I will be alone. But, the worrying isn’t going to affect any change, so it’s time to proceed in the best way I can, and make decisions I feel will help me to create a new life, or, rather, enhance my current one with new love, laughter, joy and peace.  I’m going to try harder to listen to Walt on this piece of advice!

“Life is composed of lights and shadows, and we would be untruthful, insincere and saccharine if we tried to pretend there were no shadows.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Epcot

2010- First use of the scooter to go to Epcot.

There is more light in my life now, and less guilt about feeling happiness, and I know that the people who love and care for me are glad to see me enjoying life again. But there are also the shadows, and I am not someone who likes to, or can, put on a show of emotions. The good and bad moments are all okay. They make me human.

“I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Wishing Well

2011- A visit to the Wishing Well at Cinderella’s Castle to wish for a cure for ALS.

Some people might think that my obsession with all things Disney and talk of pixie dust and wishing on stars is silly. Well, I think silly is just fine (okay, within reason.) I like to think that it is my inner child reminding me of possibilities and letting me believe in my own happy endings. But, just like Walt, I am realistic and I have experienced enough of life to know that things get complicated, and sometimes, downright ugly. In the face of life’s complexities, it helps me to stay positive if I escape for a while into a Disney frame of mind.

“In bad times and in good, I have never lost my sense of zest for life.”

ALS,Caregiving,Grief,Walt Disney World, Disney

This quote made me think of Ben and his determination to enjoy life despite ALS. He surrounded himself with music and technology, and he ventured into the world and enjoyed all that he could with a zest for life that, I believe, let him manage the disease well for about four years. It was certainly a good lesson for me.

“We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.”

Ben would not be at all surprised that this Eeyore came home with me.

This quote is my inspiration for the future. It’s allowed me to reach out to people, to travel to new places and make dreams come true- I even returned to Walt Disney World, paying tribute to Ben but also creating new memories with dear friends. Throughout these experiences, I did miss Ben. I also struggle with feeling lost and lonely. At the same time, I believe that my curiosity, desire to learn, love and compassion will keep carrying me forward to find new and more love, laughter, peace and joy. I feel cautiously optimistic about the exploration.

“All our dreams can come true, if we have the courage to pursue them.”

My buddy is Cruz. Summer 2019- finding happiness! Meeting otters- I made a dream come true!

I think that I finally have the strength to summon the courage to follow my dreams. It feels pretty great, and yet a bit scary, to say that. I do believe that pixie dust would help.

“Laughter is timeless, imagination has no age, dreams are forever.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2011- This is one of my very favorite pictures of Ben because he was so full of happiness and laughter. Here, he was laughing at me when I met Tinker Bell.

This is one of my very favorite quotes. Laughter, imagination, dreams and, of course, love, were the key ingredients in surviving years of caregiving and loss. They have always been there when I needed them, even if, at times, they felt out of reach. This is something to remember always. Never lose hope. Never lose the spark of a dream.

“First, think. Second, believe. Third, dream. And finally, dare.”

ALS,Caregiver,Caregiving,Disney,Dumbo

Here I go!

That sounds like a good plan! I’m hitting bumps in the road and struggling with confidence, but I’m working on it. Thank you, Walt