On this day, December 21, 1937, Walt Disney’s first full-length feature, Snow White and the Seven Dwarfs premiered at the Carthay Circle Theatre in Los Angeles.
I wish I could say that I have navigated caregiving and grief like Snow White, the graceful princess who happily sang her way through taking care of the seven dwarfs to a happy ending. I do believe that at times I was that person to Ben and my dad. I was very much the cheerleader and the person who tried to keep them entertained. I was also the nurturing person who managed the details of their care, the way that Snow White kept her household together, except that I lack her stellar housekeeping skills! Alas, I relate more to the dwarfs! I’ve written about how, as a caregiver, I often felt like all seven dwarfs in the course of a single day (click here for that post). To mark this anniversary of the film’s premiere, it seems fitting to me to reflect on how, in grief as in caregiving, I can feel like all seven dwarfs- at times, within the course of a single day.
Happy– In the early days of grief, you could call me Happy in those moments when I was lost in good memories or I woke up without dreading the day and the thing that would trigger my sadness. Now, you can color me Happy when I realize that I am not just going through motions, and I actually am enjoying a moment in the present without feeling guilt.
Doc– Call me Doc as I diagnose my grief. Am I doing ok? Will people think I’m doing ok? Do I care if people think I’m doing ok? Should I care? Where should I be right now in this process? Am I “normal”?
As you can tell, Ben preferred to take my pics with the dwarfs!
Bashful– Sometimes it’s embarrassing to have a setback or to feel overwhelmed with sadness or tears, especially when I feel that people are judging how I’m grieving, how long I’m grieving, and what I am doing to continue living and reshape my life. It can be difficult to ask for help, and I’m growing too Bashful to ask people who have been listening to me to continue to do so. I’ve repeated the same things so many times, and I do wonder sometimes what people must think.
Snow White and I love Bashful!
Sleepy– There are many sleepless nights for so many reasons- recalling good and bad memories, anxiously contemplating the future and feeling the loneliness and the loss.
Walt Disney World Halloween Electrical Parade
Dopey– Being caught between the past and the present can be baffling. Sometimes I find myself buying something because Ben would have wanted it. When I get home, I am only reminded that he is no longer here, and then I do feel Dopey, and more sad. There are also times when, in the middle of nowhere, something will trigger great sadness and I will break into tears. People are generally understanding, but I still feel kind of Dopey, and Bashful, for that matter!
Not sure which of us is the real Dopey!
Grumpy– The conflicting emotions of grief definitely make me Grumpy at times. Sorry!
Ben (pre-ALS) and Grumpy, Walt Disney World, 2001
Sneezy– Still allergic to Disney, the cat! I still would not trade her for anything. She has been the greatest comfort to me.
How about you? Are you more Snow White or one or more of the dwarfs? Please share in the comments section below. If you don’t see the comment box, just click on the title of this post.
Ben playing the drums at Walt Disney World’s Animal Kingdom. He loved listening to and making music.
Sometimes, in grief, it seems like pixie dust is sprinkling down on me to let me know that Ben is watching over me to give me hope and inspiration for engaging in life. Maybe you don’t believe in that. Let me share an experience I had last night.
I went to see the Paul Winter Winter Solstice Celebration at the Cathedral of St. John the Divine in Manhattan. It was something I have wanted to do for years. I knew of Paul Winter from many years ago, when my uncle took me to hear a concert. Ben was intrigued, and he liked the Paul Winter CDs I played. Ben loved music and he was a talented, self-taught musician and music orchestrator. He especially loved playing and listening to the soprano saxophone, which is Paul Winter’s instrument. We just never seemed to make it to a concert. After he was diagnosed with ALS, it was too difficult to get there. I would never have gone without him.
I’ve been slowly getting used to doing things that I could not do while Ben was ill. I still experience a feeling of guilt- that Ben is not here to enjoy things, that I should not enjoy life if he cannot- but I am pushing through that to find that balance of continuing to live while I keep him with me in my heart. It’s not easy, and it comes with tears, but I can also say that even six months ago, I would not have been able to do something like go to a concert that Ben would have loved and that I wished we had been able to attend together.
The Cathedral of St. John the Divine is a magnificent building, and one of the five largest churches in the world. The acoustics and the magnificence of the building enhance the whole concert experience. I listen to music differently and more intently because of Ben’s love and understanding of it.
It’s hard to even describe the concert, other than how incredible it was- it was a winter solstice celebration, with the participation of the Forces of Nature Dance Theater, vocals by Theresa Thomason and, of course, the brilliant consort musicians. The production elements were visually stunning, and we were mesmerized.
The Cathedral of St. John the Divine, NYC- Paul Winter ‘s Winter Solstice Celebration
I did not know that this year, there was a special guest, Gary Brooker, of Procol Harum and “A Whiter Shade of Pale” fame. He also has connections to the Beatles and to Sir George Martin, producer of most of the Beatles’ recordings, as does Paul Winter. Ben was a huge Beatles fan. Gary Brooker talked about when John Lennon was shot, and as a tribute, he sang “In My Life.” This was very emotional for me because it was Ben’s favorite Beatles song, and a song that was even played for him on the day he left this earth. My immediate reaction was that Ben should have been there to hear this and I did shed some tears. However, there was also a deep feeling of comfort, and of the universe at work. It seemed meant to be that after all of the Paul Winter concerts that I missed, that I could finally make it to this particular concert on this particular evening, thinking so much of Ben because of the music, to hear this song and see Gary Brooker, whom Ben would have been so happy to see and hear performing this song with Paul Winter on the soprano sax. Somehow, I just knew that Ben was with me and was part of it. For this first time, this kind experience did not devastate me and overwhelm me with guilt. Instead, it comforted me because it conjured Ben and what he loved. The fact that there was a Beatles connection and Ben’s favorite song was performed was an unexpected but such a special, almost spiritual surprise.
Lyrics of “In My Life” on the card I designed to send to people for their expressions of sympathy.
Maybe it was not mystical, but a fortunate, lovely coincidence. Of course, that’s possible. But, my reaction of feeling comfort and even joy indicates a growth in my own spirit, and a shift in my grief. It feels like I have made some progress to believe that I am ready to have this kind of experience and move beyond profound sadness to look for messages of love and hope and connectedness. It has not been a quick and easy process. It is ongoing and unpredictable. But, moments like last night are positive and empowering, and, also filled with love, and that feels like pixie dust to me.
I was feeling good this morning. It was a feeling of knowing that Ben was with me and that I was being watched over. It snowed a bit in NYC and it was nice to see when I went out. Ben and I loved the snow. I turned the corner onto Broadway and enjoyed seeing the Christmas tree stand where Ben helped me pick my first real tree, and where we got all of our subsequent trees. I had to smile when I saw there at the stand a huge inflatable penguin. Ben and I absolutely loved penguins, and we had quite a fun collection of penguins. You can call it a coincidence and a typical icon of winter and the holidays. I call it a sign from Ben. I think Peter Pan was right when he said, “All you need is faith, trust and pixie dust!”
Ben in healthier days in Woodstock, Vermont, 2001. We loved it there.
Inflatable penguin at the Christmas tree stand on Broadway in NYC.
Walt Disney’s legacy lives on so vibrantly and timelessly in so many ways that it’s hard to believe that today, December 15, 2016 marks 50 years since he left this earth. I’m sure it’s no surprise that I love to read about him, and to 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 remember my mom talking about her favorite Disney movies and how she loved Mickey Mouse from the time she was a child. She was just a little girl when he was “born.” “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. I believe that 50 years from now, and, as Buzz Lightyear would say, “to infinity and beyond,” Walt’s words of wisdom will still stand strong, as will his legacy.
My blog was inspired by the way that I was affected by Disney films, characters and lyrics in light of caregiving and loss. The same can be said about many of the quotes I’ve read by Walt. It seems to me that this is a good day to reflect on some of his words of wisdom that have consoled me, intrigued me and entertained me. Now, they are helping me to look forward and I think that’s especially significant as we approach a new year.
“That’s the real trouble with the world. Too many people grow up. They forget.”
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. My husband, 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 have 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.”
This is absolutely true. Alas, I am a worrier, and I have to work on this, but Walt is 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. 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.”
Grief is tricky. I feel myself take steps forward, and then something triggers a setback. The reactions people have to grief also vary. Some people expect you to “get over” loss within a designated time period. Some people want you to act like everything is fine, because they are the ones who really cannot handle the emotions. I do feel like there is more light in my life now, which sometimes makes me feel guilty but also makes me happy, and I know that the people who love and care for me are glad to see me beginning to enjoy life again. But there are also shadows, and I am not someone who likes to, or can, put on a show of emotions. It’s all okay.
“I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter.”
The Wishing Well at Cinderella’s Castle. We always wished for a cure for ALS. I still hope that wish comes true.
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.”
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.”
This quote is my current inspiration for the future. I believe that my curiosity, desire to learn, love and compassion will carry me forward to find new and more love, laughter, peace and joy. I cannot deny that right now I feel a bit lost. At the same time, I feel cautiously optimistic about the exploration.
“All our dreams can come true, if we have the courage to pursue them.”
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.”
This is a comfort to me. 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.”
This beautiful song by Chris Martin, and performed by Jodi Benson, never made the final cut of “The Little Mermaid.” I discovered it on “The Essential Collection of Disney Love Songs” and it also appears on other Disney albums. Unlike many other Disney memories that I share on this blog, this song was not one that held a specific meaning for Ben and me, and it did not represent a special time in our lives or relationship. It was not even associated with our time spent at Walt Disney World. But, it is the song whose lyrics spoke to me at a critical time when Ben was in the hospital. Given Ben’s profound love of music, I believe that he would appreciate that it was the lyrics to a song that proved to be so powerful to me.
As the title of the song might imply, Ben and I loved to dance. Nothing fancy, but we would put on music in the apartment and just dance. And, when we worked together at The Little Orchestra Society, we always danced at the organization’s events. It was romantic, silly, fun- it was us.
Before he ever went to a doctor, much less was diagnosed with ALS, Ben started having trouble with his legs. It took him a long time to admit to me that he had fallen down the steps in the subway and on the street, though he had told me that he was perplexed that I could do my Zumba routines better than he could- coordination and grace are not my strongest suits!
The first and last pictures on this slide show were taken at the Bar Mitzvah of my good friends’ son. Ben’s legs were bothering him but he wanted to dance. We were having so much fun at this happy event. As it turned out, this was the last time we danced together. Who could have guessed? I am so grateful to have this photo!
As it became more difficult for Ben to stand on his own, music and dancing still played a part in our lives. While he could still walk several steps, sometimes I would just help him up and we would hug and sway to the music. It felt like dancing, and like old times, and that felt good.
I remember that during our first visit to Walt Disney World after his diagnosis, I was helping him to stand up from a rather low sofa in our hotel room. I counted to 3, but then, remembering the song “1,2,3” by Gloria Estefan, I added the song lyrics, “4, come on baby say you love me!” From that point on, we rarely just counted to 3 and he often laughed as I reached “3,” waiting for me to add the rest. As the ALS progressed, Ben was less and less mobile, but our counting and that song continued to make us laugh. Transferring a person is not easy, and it can be stressful because there is always a risk of falling, or dropping, so it was good to have these little moments of levity.
Our lives changed drastically, but because it happened over a period of almost six years, maybe some changes felt more subtle. ALS slowly took away Ben’s ability to use his legs, his arms, his hands, his voice. He couldn’t eat foods unless they were pureed. He had difficulty breathing. But, he was still Ben and he had determination (at times, stubbornness) and a good sense of humor. He was also clever and he loved gadgets and technology. For example, he used an app and an on-screen keyboard to use his computer and to send texts through his computer when he could no longer handle the phone. He figured out how to organize some of his things so he could make them accessible. These are just a few of the things that were part of living with ALS. We adapted as best we could.
Ben adjusted to the things he could and could not do as the ALS progressed and I adjusted to new tasks to help him. When I think of Ben’s very serious challenges, it may seem silly to lament an inability to dance. But, dancing was one of the things that was so special, so intimate, so us. In the chaos of the disease, I can’t say that I thought to analyze how much the changes in our lives were affecting us beyond our daily routines. I can’t say that either of us even had, or took, the time to dissect the dynamics. We just kept going. But, losing something like dancing made more painful the shift in our relationship from husband and wife to patient and caregiver. Impromptu moments like dancing to a favorite song were replaced with the more immediate tasks of caregiving. To mention missing things like dancing meant the possibility of upsetting Ben, and making myself sadder, because things were not going to get better and we could not change that fact. Sharing a memory was wonderful, but expressing sadness about our losses was not.
Eventually, yet in a pretty rapid and intense decline, Ben began to have more and more difficulty breathing and eating. His feet were also swelling very badly. He opted to get a feeding tube. However, just before the arrangements were made, Ben ended up in the Emergency Room and he got a feeding tube and a tracheostomy. It felt like it happened in a whirlwind and yet it felt like time stopped. So many decisions to make, and so many adjustments. Suddenly, we could not even communicate in the same way. It was frightening and devastating, but he was so incredibly brave and calm. It was clear that he was not going to be able to come home because he would need 24-hour nursing care, and, intellectually, I understood that. But, I believe that my mind was spinning too much to think about what it really meant. Ben was frustrated and upset about not coming home, and that broke my heart. I was worried about him not being home and my not being able to be with him constantly, but I was also dealing with logistics and his medical teams, and simply being present for him as we determined next steps.
I spent every day and several nights with him during the nearly two months that he spent in the hospital. I usually got home very late at night and sometimes relaxed with music, using Ben’s computer for his playlists, which I found comforting. One evening, I remember sitting at his desk when “One Dance” played. I thought about the fun times that Ben and I had dancing in the apartment and I realized just how much I missed those moments. I had done pretty well with recreating memories, especially when we returned to Walt Disney World for our last visit. But, in that instant of hearing the lyrics to the song, the realization came crashing down on me that we would never dance again, and he would never be home again, and he really was going to die. Maybe you’re thinking that he had ALS, so, of course, he was going to die. Yes, I did know that, but that does not mean I truly accepted it or the fact that the time was nearing. But somehow, hearing those lyrics was a jolt of reality that I had not yet faced. On that quiet night, listening to this song, I finally accepted and reacted to what I had not until that moment let myself fully believe–that Ben would soon leave this earth and nothing would ever be the same.
There are stars that fill the night, can you see them? There are two, or three or gee, a million more And I see you in their light Oh, me? A dance? All right. Just to move and glide with you across the floor
I would change who I am Leave the sea for the sand Just to stand with you I would leap at the chance For a glimpse of a glance Of one dance with you
I still listen to the song even though it always makes me cry. In fact, sometimes I play it when I need a good cry, because, yes, there are those times. I have become unapologetic about embracing sadness, because, frankly, there will always be the tears over the loss of Ben, and how much he and we lost. At this point in time, however, I think it’s a matter of my finding the balance between grief and life. It’s not an easy balance to find, but I do feel a steady shift in my perspective that’s allowed me to bring more joy back into my life while I keep Ben in my heart.
It makes perfect sense that the clearer memories are the more recent ones, during Ben’s ALS, when the physical and emotional issues and tension were center stage. Those issues were not unique to us or even to ALS. They certainly are not the memories I want to define us. However, they are important in their own way, because they represent a strength of heart, love and compassion that saw us through such terrible experiences.
I also want to let myself get transported back to those dances and special times that made us who we were together. The memories I cherish, and that belong only to Ben and me, are simple joys like dancing and, of course, anything related to Disney! I will always miss those times, and I will always know that I am fortunate to have had them. I am pretty sure that I also always will believe in happy endings, pixie dust and Disney magic, too.
One dance, just you and me Beneath the moon, beside the sea One dance and it’s happily ever after
Our last family Christmas/Chanukah, 2014. We got matching Mickey and Friends pajamas- even Disney! (She liked the pajamas, but not the picture-taking!)
Thanksgiving has come and gone. My second Thanksgiving spent without Ben. My second holiday season now begun without Ben. I’m sad to say that I’m finding this year to be getting off to a very rocky start. I wasn’t expecting that. I guess I also wasn’t expecting to feel worse the day after the first anniversary of Ben’s “leaving,” as he would say (click here to read that post), so I guess I need to abandon my expectations. Grief. If only it came with an instruction manual. I understand some of it, and can predict and gear up for bad days like anniversaries of various events. But, when I’m unprepared, the sadness really shakes me.
I am grateful for so much, including having wonderful friends who include me with their families. But, I think that last year I went through motions and was either sad, numb, distracted, or any combination of those feelings. This year, I took the time to think about what I would like to do over the long holiday weekend, and I chose to decorate my apartment for the holidays and to get together with friends.
Thanksgiving is a family holiday, and I’ve lost my parents, closest relatives, and Ben. My aunt Eleanor has Alzheimer’s disease, and although she seems to recognize me as familiar and we relate very much as we always did, I’ve lost her, too. My friends are my family, and I am so fortunate for that, but it’s also been a harsh reality and an adjustment. I think it’s also part of the process of grief, and of life.
Last year, I set up the sparkly pink and silver tree that Ben got me a few years ago, when a real tree and the lights became too much to deal with, given his caregiving needs and our limited space. Ben always left decorating the tree to me, because he said he’d never seen anyone get so excited about decorating a tree. But, he would occasionally chime in on where he thought ornaments should be placed. I missed him while I was decorating, but I missed him no matter what I was doing. I didn’t get any new ornaments and kept everything as it had always been. I even put his favorite ornaments in the same places on the tree, where he was able to see them from his desk. I remember that the tree did not bring me a lot of joy, but it didn’t make me especially sad either. I was struggling with so many emotions at that time that the holidays were just one more emotional episode to add to my list.
Ben loved Sully (top right). The high-four balloon had symbolism (see my birthday post). The French girl from It’s a Small World was also a favorite- ooo la la!
This year, although I miss having a real tree, I felt like I wanted to keep the pink one again because it was a gift from Ben. I expected to set it up on Thanksgiving with our ornaments, most of which are from Walt Disney World. Last winter and spring, I repainted, recarpeted and got some new furniture and I was actually looking forward to seeing my holiday decorations in my “new” setting. It didn’t turn out to be the positive experience I thought it would be. Instead, I’m feeling down and defeated because decorating has been a laborious and sad process. The bride and groom Mickey and Minnie ornaments that we got when we became engaged just reminded me of a happily ever after that didn’t happen as planned. On the other hand, I still love to look at the photo ornaments that we had made after each trip. I can see the way he changed over the 6 years that his ALS progressed, and yet I also feel so grateful that we could make those trips after his diagnosis and that we are so happy in each photo. And, I remember how we pored through photos to pick the ones that would become ornaments.
It’s a Small World (my favorite song!) at the top and to the left of our photo ornament is the Hawaiian girl from that attraction- we loved her.
Again, I placed his favorite ornaments on the tree where he would have been able to see them from his desk. It’s where they belong. I did get some new ornaments in London. I thought they would be nice, new additions to reflect a favorite place and new things in my life. But, when I placed them on the tree, I immediately felt that they didn’t belong. They interfere with my memory of what is still, in my mind, our tree. My tree is a wonderful visual representation of my life- the wonderful memories of times with Ben meshed with the addition of new memories I’ve created as I’ve taken my first baby steps on a new path. By including my visit to London, which was a big step for me (click here for that post) I’ve also shown that I’ve made progress in my grief and my life. However, I did not anticipate that I would also see a jarring clash of past and present. I spent so much time trying to keep things the same- even continuing to arrange things for Ben the way I used to- but things are not the same. The beautiful ornaments that I found in London change what I seem to want to keep frozen in time, as if Ben is still here. I did not realize that until I saw all the ornaments hanging on the tree.
Disney ornaments, one of our photo ornaments, one from Liberty and one from Harrod’s in London. There’s also a Schnauzer I got with Ben- I grew up with Schnauzers.
This year, I feel sharply the pain and the loss, while I’ve also accepted that I need to shape a life. It’s a difficult balance, and maybe that’s why this year is harder. I have heard that sometimes the second year is harder but I don’t think there is a steadfast rule. That’s the problem with grief. There is not a one size fits all way to experience it. Last year everything was a mess. This year, just as I felt I’ve made some progress in adjusting to life, I was caught off-guard with tears and loneliness when I was doing something I looked forward to doing.
Ben’s little Disney fiber optic tree. It was always on the corner of his desk. I got a new table, but I still keep the tree in the same place.
I wrote this blog post because I thought that sharing my own experience might help other people in grief and struggling with not knowing how to handle the holidays or where they belong. Maybe you can relate or maybe this is not your experience. I do think that part of grief is accepting that there are going to be good and bad days. I am grateful that I do have more good days now. My very whimsical tree still shouts a love of Ben and our memories and love of Disney. I have faith that as the season progresses and I continue to adjust to my tree, and, beyond the holidays, my life, that I will find a balance that respects my memories and traditions but also welcomes new ones.
Feel free to share your experiences or ideas or advice in the comments section below.