One Dance

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized ALS, caregiver, caregiving, Disney, grief, The Little Mermaid 1 Comment

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