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.