The Soundtrack Of Memories in Caregiving And Grief

Ben was doing his best Ricky Ricardo impression. 2007

 

I have always loved music, especially Broadway show tunes and Disney songs, but all kinds of movie soundtracks and pop music, too. Music was an integral part of Ben’s life and he taught himself several instruments. Even as it became more difficult for him to stand on his own, music and dancing still played a part in our lives. Sometimes, as I was helping him stand, we would hug and sway to the music. It felt like dancing, and like old times, and that felt good.

We had songs that meant a lot to us for various reasons. Now, every morning during my commute, I listen to my “Ben” playlist, comprised of songs that were meaningful at the end of his life and that were played for him on his last day. It is an important routine for me and it gives me a certain comfort to hear these songs and think of him as I start my day.

Yesterday, I was listening to music as I walked downtown. I put on a playlist of Gloria Estefan songs, so I would feel energized. Suddenly, the song 1,2,3 came on. I couldn’t listen to it and immediately forwarded to the next song. 1,2,3 was a song that was very significant and fun for us, yet it’s a song that I have not been able to listen to since Ben left this earth.

During our first visit to Walt Disney World after his diagnosis, I was struggling to help Ben to stand up from a rather low sofa in our hotel room. I counted to 3, but then, remembering the song 1,2,3, I added the song lyrics, “4, come on baby say you love me!” Ben couldn’t stop laughing. From that point on, this was our counting ritual, and Ben often started to laugh as I reached “3,” waiting for me to add the rest. As the ALS progressed, 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.

I can’t say why this is a song that I cannot hear and focus on the memories of the  laughter. After all, I listen to and find comfort in songs that were played on the day he died. But, this is a song I can no longer enjoy and I don’t want to hear it.

Another song that is a jolt to my system is One Dance, but although I have to brace myself, I do continue to listen to it. 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. It is the music in the video clip below. Click here to read the whole post about music and the song.

The lyrics of One Dance spoke to me at a critical time when Ben was in the hospital. 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. 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. I was also very busy and distracted by the day to day, moment to moment activities and decisions in the hospital.  Somehow, hearing those lyrics was a slap 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 

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. 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.

One dance, just you and me 
Beneath the moon, beside the sea 
One dance and it’s happily ever after 

I want and need 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 songs, dancing and, of course, anything related to Disney! I believe that 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.

Over the past three years, I have at times wanted comfort, at times wanted to sink into the depths of sadness and everything in between. I have at times chosen to watch Disney films that I knew would make me cry, recognizing my need to do so, while sometimes finding great joy and comfort in those same films or others. I have never been one to fight my feelings. I am not afraid of tears and sadness. If anything, for some time after I lost Ben, I had difficulty, and was guilty, for feeling happiness. Grief has helped me to accept that my emotions are not always under my control, but that they are all legitimate and genuine. There will be the unexpected triggers of good and bad memories. Maybe one day I will be able to hear 1,2,3 and maybe not. I don’t think I will ever really understand the reasons. I will have to continue to follow my heart and listen to the songs that tug at my heartstrings depending on my moods. But, I do love that music will always tell Ben’s and my story. It is the soundtrack of our relationship that I will always be able to conjure. As the song from Bambi goes,

Love is a song that never ends
One simple theme repeating
Like the voice of a heavenly choir
Love’s sweet music flows on.

The Dapper Dans were very cool! Ben always loved them.

 

On Looking Up, Cheering Up And All Things Up…Or Not

ALS,Caregiver,Caregiving,Disney,Dumbo

I just saw the new Dumbo, which I enjoyed. It’s a different telling of the story, with added dimensions that make it darker and a bit harsher, and once I suspended comparisons to the original animated version, I was able to see a lot of good things. Seeing Dumbo fly continues to be magical, despite the obvious theatrical effects, because we are rooting for this very sweet and sad little elephant. His flying is overcoming a challenge and finding a gift and talent. He doesn’t just fly, he soars! Isn’t that what we all strive to do?

Seeing the film made me think about all of the references to flying and looking up in terms of our viewpoints and moods. Think of the expression “cheer UP.” It’s interesting how we look up to the sky for hope and inspiration. When I was about four years old, my great-grandmother died, and I was told that she went up to heaven. I took that literally, as most kids that age would, and whenever I saw a pink sunset, I thought she was saying hello from heaven. To this day I think of that.

Here’s some UP-lifting inspiration in Disney and Pixar films.

ALS, Caregiving, Caregiver, Disney, Dumbo

After seeing the new Dumbo, I couldn’t help but think of the original Dumbo and its unforgettable quote, “The very things that held you down are going to carry you up and up and up.” I have written about how I lost myself when I was the caregiver simultaneously for my dad and Ben, but that it was also the most loving and meaningful experience I have ever had. (click here for my prior Dumbo post). Through that experience, as I began to reshape my life, I realized that being a caregiver is integral to who I am. It was not a quick revelation, and it took distance from the actual work of caregiving to see it, but I did gain insight. That, in itself, has given me perspective that meaning and significance may reveal themselves in unexpected ways and in due course. It comforts me to know that it’s there and it makes me want to find it. That is pixie dust and Disney magic at its best!

“Think of all the joy you’ll find, when you leave the world behind and bid your cares good-bye. You can fly!”- Peter Pan

ALS,Caregiving,Grief,Walt Disney World

Ben and I with Peter Pan and Wendy
Walt Disney World 2006
Before ALS

This is a bittersweet quote to me. I think about Ben leaving this earth. I believe that he found peace, and hopefully, joy, when he bid farewell to ALS and its physical and emotional tolls. Now, for me, it is a message of rising above the scars of caregiving and loss. Again, those things may have held me down, but they also lifted me up so that I can fly over those obstacles. Being able to fly allows me to look down and get a clear and bigger picture of the trajectory of my life. The sky is endless, as I like to believe are the possibilities.

 “There’s a different point of view awaiting you if you just look up.”– Jack, Mary Poppins Returns

It’s hard to argue with Jack, especially when Jack is played by Lin-Manuel Miranda, who seems to do everything right! I have found that sometimes even a conversation with someone allows me to look at a situation in a different light that is helpful. It may be positive, it may even be negative, but a new change of view can let some light, or wisdom, into your current situation.

Walt Disney World, Mary Poppins, Grief, ALS

Ben and my second visit to Walt Disney World, 2002
Mary Poppins is the first movie I ever saw in a theater. It will always have a most special place in my heart.

 “When you change the view from where you stood the things you view will change for good.” – Mary Poppins, Mary Poppins Returns

Mary Poppins-in her original and reimagined form-inspires me! I do believe this because I have experienced it. It took some time after my caregiving days and the depths of raw grief to reframe my thoughts and memories. Although I wish upon wishes that my loved ones did not have to suffer and need me as a caregiver, I can now look back on my memories, shifting from the challenging times to see that I learned so much and had a unique and treasured opportunity to give and receive love. I am not being naïve or denying the physical and emotional challenges and scars, but broadening my way of looking at them.

ALS, Disney, Aladdin,Genie,Caregiving,Grief

If I’d known when I met Genie that Ben would get ALS, I would have asked him to grant the wish of a cure.

Unbelievable sights
Indescribable feeling
Soaring, tumbling, freewheeling
Through an endless diamond sky”-
from the song A Whole New World, Aladdin

Songwriters: Alan Menken, Tim Rice

Looking up into the sky to me seems like just a way of reminding us to look for the unseen possibilities and unexpected surprises. Yes, I have been, and will be, disappointed in people and events, but I am more keen to remember the delightful surprises- the people who have shown up, the kindness that I have received, the memories that have shared with about Ben from people whom Ben and I both thought had forgotten him. I think about the new friends I have made and the lasting friendships that have been strengthened. Those are all indescribably wonderful feelings.

Nowhere To Go But Up
Songwriters: Scott Wittman / Marc Shaiman

Life’s a balloon
That tumbles or rises
Depending on what is inside
Fill it with hope
And playful surprises
And oh, deary ducks
Then you’re in for a ride

Look inside the balloon
And if you hear a tune
There’s no where to go but up
Choose the secret we know
Before life makes us grow
There’s nowhere to go but up

I love this song, and not just because it was sung by one of my favorite performers, Angela Lansbury! But, it’s a realistic look at life that acknowledges its ebbs and flows. I get my strong inner child from my mom, but I hold onto it to try to find the pixie dust when things are lousy. It made me want to handle the challenges of caregiving and grief with at least some level of grace and helped me to bring smiles to my dad and to Ben. It allowed Ben and me to go to Walt Disney World and shed our cares as we lost ourselves in the magic. And, although I have the moments when I still feel like I’m stuck on the ground, I do aim to look up for the pixie dust and to spot the magic. I may be down, but from down, there’s nowhere to go but up, especially if I hold on tight to the child-like whimsy that I get from my mom.

Let’s Go Fly a Kite’
Songwriters: Richard Sherman / Robert Sherman

Let’s go fly a kite
Up to the highest height!
Let’s go fly a kite and send it soaring
Up through the atmosphere
Up where the air is clear
Oh, let’s go fly a kite!

Mary Poppins, Walt Disney Productions, 1964

I had to pay homage to my very favorite Disney film, and the first I ever saw in a theater, Mary Poppins. Who can forget the images of the family walking down Cherry Tree Lane with the kite and then of everyone flying their kites and looking up, spreading good cheer, even sharing good memories as the bank partner spoke of the passing of his father. And, just like I believe that my loved ones are watching over me, you know that Mary Poppins is taking to the skies to watch over the Banks family. Lest you think I have overlooked the original Mary Poppins, click here for a post on wisdom from Mary Poppins

“When the world turns upside down, the best thing to do is turn right along with it.” – Mary Poppins, Mary Poppins Returns

Looking up can certainly help us to cheer up and to change our moods. But, the truth is, sometimes we can barely get off the ground or out of bed. I firmly believe that I need to let myself feel sad. We need to trust ourselves and not force a smile when we’re not feeling it. There have been times when I have told people I’m fine. There are times I’ve told myself I’m fine because maybe I haven’t even realized that I’m not. Then, the tears really flow. It’s exhausting. Friday would have been Ben’s and my 20th anniversary. There was a sadness to the day that I could not deny or ignore. But, I have also learned not to anticipate how I will feel or what I will do. In fact, it was an up and down kind of day.

There is so much advice in Disney films about looking up when you’re feeling down.  I do think it’s important to remember that in the depths of grief, we don’t always want to look up. Or, we want to, but we are incapable of feeling anything but devastation, anger, confusion or even numbness. I agree with Mary Poppins (no surprise there!) There is a point during Disney Pixar’s Inside Out (clip below) where Joy realizes that life is a composition of many emotions. We cannot eliminate the sadness, or even the anger or anxiety. It is the human experience. For me, it’s a matter of balancing the emotions, looking for good memories and knowing that I can pace my life and be attuned to myself. I can grant myself permission to feel any emotion at any time and know that I am, and will be, okay. Also, that there is help in many forms if I’m not feeling okay.

I want to conclude with Up, a film that, in its title alone, summons optimism! It’s always been important to me to acknowledge my feelings and to validate the feelings of others without stamping my prescription for cheering up, unless specifically solicited. There are ups and downs. These days there are more ups than downs, though there is always insecurity about the future and even a certain fear of being alone. But, as Ellie taught Carl, I remind myself that “Adventure is out there.”

I hope that Ben and my dad are at peace, up, up and away from their illness and worries. I know that they are looking down and watching over me.

ALS,Caregiver,Caregiving,Disney,Dumbo

 

Happy Anniversary, My Mickey

ALS,Walt Disney World

A PhotoPass photographer caught this moment in front of the Castle at Walt Disney World. It was actually the first time we returned after Ben’s ALS diagnosis in 2010

Today would be Ben’s and my 20th anniversary. That’s hard to believe, as it’s hard to believe that it’s been four years that I’ve honored this day by myself. I think I’ll always mark these events in my heart. And, I think that’s ok. In fact, I think it’s good. I remember when we wore our “Happily Ever After” buttons at Walt Disney World, even after his ALS diagnosis. It isn’t always easy to remember pre-ALS days, but days like today bring me back to who we really were and the Disney-like romantic times that we were so fortunate to share.

I believe that Ben is now watching over me now as I make new milestones, knowing that I always keep him close. Last year, I truly believe that he brought me the spectacular peak bloom day for the cherry blossoms in Washington, DC, despite the lousy weather predictions. (click here to read about last year’s anniversary and my visit to the cherry blossoms). That brought me comfort and enveloped me in his presence, which brought balance to the loneliness. I know he’s with me today, too, and that he is always with me.

I am once again reminded of one of my very favorite quote and a conversation in which Christopher Robin tells Winnie the Pooh, If ever there’s a tomorrow when we’re not together, there’s something you must remember…You are braver than you believe and stronger than you seem and smarter than you think…. But the most important thing is, even if we’re apart, I’ll always be with you.

This clip has the whole sweet conversation between Christopher Robin and Pooh, from Pooh’s Grand Adventure: The Search for Christopher Robin (1977), Walt Disney Television Animation

When Ben proposed to me, he asked me to be his Minnie. So, Happy Anniversary, My Mickey. I miss and love you.

Love,

Your Minnie