Film clip: The Parent Trap (1961) Walt Disney Productions
I’ve written so often about memories. Memories give me so much comfort, even when accompanied by tears. They sustain me yet they do not hold me back because they let me know that I have the power to hold them dear while reaching for new memories. I love this clip from “The Parent Trap,” when Susan/Sharon meets her grandfather for the first time (unbeknownst to him). I’ve written about it before (click here for that post). I guess it especially tugs at my heartstrings because I was so close to my grandma and my great-aunts and great-uncles.
I had an experience over the weekend that made me think of this clip and the memories conjured by scents. I cooked dinner for a good friend who is recuperating from surgery. I have not really cooked since my dad died back in February of 2014. Shortly after that, Ben began to struggle with eating. Yes, I made dinners. I cooked chicken that I pureed with all sorts of sauces and mashed potatoes for Ben. We did have many laughs about my Vitamix concoctions. But, once Ben could no longer chew with ease, I stopped cooking the meals he loved but could no longer enjoy.
When my friend asked if I could help her by preparing some meals, I decided to cook one of the meals my dad and Ben loved- Greek shrimp with home-made tomato sauce and feta cheese (from Jane Brody’s seafood cookbook). As I walked to Fairway for ingredients, I felt overwhelmingly sad. As I’ve written before, firsts are always hard. It didn’t occur to me to think of cooking in this way, but it was a first. I always miss Ben when I go grocery shopping. It’s those little things that are unexpectedly difficult and therefore, unpredictably emotional. They leave me feeling lonely and alone. I tried to comfort myself with the memories of our adventures in cooking, when I would find a new recipe, or try one of my own, and it would be delicious. I would always cook enough for us, to bring to my dad, and with leftovers for all. I committed to making this meal and just had to get through this first time.
As I began to sauté the garlic and shallots, I remembered how much Ben loved that smell. He always laughed and said it made him hungry and I joked that I didn’t even have to add anything else. His presence at that moment was so strong. I could vividly picture him smiling. I missed him. It was not the same to cook without him, and it was not the same to cook that meal for anyone other than Ben and my dad. I don’t actually think I could have done this cooking soon after the loss of Ben. Now, after two years, I can broaden my perspective to feel sad yet also consoled by the memories that keep Ben and my dad (and mom and grandma) close to me.
I’m pleased that my friend was very happy with the meal. Ben and my dad would have been proud. I think that I will always think of them when I make that dish and other ones that we all loved. I will always picture Ben’s smile when I sauté garlic with other herbs and vegetables. In one way, it will probably always make me sad. But, I hope that I will also look up and smile, as I did last weekend, as I remember the good times and take pleasure in sharing those memories of Ben while creating new memories with other special people in my life.
2011- This is one of my very favorite pictures of Ben because he was so full of happiness and laughter.
The photo at the beginning of this video came up on my Facebook memories today. It is such a cherished memory because it was a happy time and the last time that Ben and I danced together. It reminded me of the following post, which I wrote quite a while ago about a special song and magical memories. I wanted to share it again to revisit the thoughts and share the beauty that music and lyrics offer as we sort through our feelings and experiences.
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
Since today, October 1, marks the 82nd birthday of Julie Andrews, I will devote this post to Mary Poppins, the consummate nanny who taught me many things about caregiving. “Mary Poppins” was the first movie I saw in a theater and it remains a favorite, as does Julie Andrews.
A kind yet stern and always magical nanny, Mary Poppins added whimsy to life while addressing all of its practicalities and mishaps. She got Jane and Michael Banks to use their imaginations and see beyond the confines of their nursery. They were safe in her care, learned the importance of rules but also how to challenge them, and, because she knew just how to step in, they built and strengthened relationship with their father. She knew how to meet the needs of the Banks family better than they did. Now that’s what I call a great caregiver!
Here are ten lessons about caregiving that I learned from Mary Poppins:
“In every job that must be done there is an element of fun.”
There were days where there was nothing fun in the actual tasks required in Ben’s care due to ALS. But, those silly moments that made us laugh amidst the sadness are the ones that still stand out.
“Worrying won’t help anyone.”
Even as a worrier, I know it’s true. It doesn’t help. But, if it helps you to picture worse case scenarios and create plans if necessary, go for it. Just don’t dwell! Trust Mary Poppins. It doesn’t help.
“Just a spoonful of sugar helps the medicine go down, in the most delightful way!”
Lyrics to live by! I was there for a reason, and that reason was love and compassion. There’s the sugar. It made the awful, embarrassing tasks “swallowable.”
Click to play:
“Never judge things by their appearance…even carpetbags. I’m sure I never do.”
Because a person needs a caregiver does not mean they become irrelevant. When people would come to see Ben and talk to me as if he wasn’t there, I would redirect them to include him in the conversation, even if I had to explain what he was saying as his speech became more impaired. His brain was still very active. He mattered. I did not let anyone make assumptions about his capabilities or ideas. Always let the person know they matter. Because they do.
The same goes for people who judged our relationship. Whatever people thought of me, or of Ben, and our caregiving situation, we were the only two who were actually in our relationship for sixteen years. In any caregiving situation, particularly within a family, there are dynamics that only those involved can really understand. You can have opinions, but tread gingerly when it comes to offering advice, even if it is requested.
Sometimes a little thing can be quite important.
A smile, a thank you, a kiss, remembering something special. I’ve written about how Ben and my relationship felt like it shifted from husband and wife to patient and caregiver. It was in little things like holding hands, sharing memories, or “inside jokes” that we were brought back to who we really were as a couple before ALS.
Best foot forward. Spit spot.
It’s all you can do. And, when you’re dealing with a lot of crises, you can’t take a lot of time to ponder. As I’ve said in prior posts, I often had to “just keep swimming,” even though I belly-flopped, but I always put my best foot (or fin?) forward!
Let’s go fly a kite
All at once you’re lighter than air You can dance on the breeze Over houses and trees With your fist holding tight To the string of your kite
OK, we couldn’t really do that. But, we had to maintain a sense of fantasy and whimsy that could take us outside of our reality, at least for a few moments. The trips we took to Walt Disney World were always magical, and they took on a special meaning after his diagnosis. Those trips were the kite that took us briefly away from reality. Now, I can look back on those memories with gratitude and a bittersweet delight.
It’s a jolly ‘oliday with Mary
Oh, it’s a jolly ‘oliday with Mary Mary makes your ‘eart so light! When the day is gray and ordinary Mary makes the sun shine bright!
Ben teased me that I loved to use the word “whimsical.” But, I enjoyed bringing whimsy into his homebound life. I often arrived home with shopping bags of “treats”- new tshirts for his collection, a gadget that I thought might help him, a new ingredient for our culinary adventures into pureed concoctions. It always made him smile and laugh. That made the “sun shine bright” for both of us!
It’s a great word. Covers a lot of territory. It especially made me chuckle to myself when a bevy of not such nice words were going through my head! Try it.
Click to play:
“Mary Poppins. Practically perfect in every way.”
I tried, and often beat myself up too much for feeling that I was not a good enough caregiver. It’s a great goal, and always important to remember that we all define “perfect” differently, and that the definition may vary by circumstance. I hope that, at least at times, I was Ben’s Mary Poppins.
Happy Birthday, Julie Andrews! Thank you for all of the joy you’re brought!
All photos: Mary Poppins (1964), Walt Disney Productions.
I’ve written a lot about wishes. Maybe it’s my belief that wishes can come true that allows me to see, or to look for, the bits of wishes that come true, and remind me of what’s really important.
When my cat, Disney, became ill a few weeks ago (click here to read about that), I sat in the vet’s Emergency Room waiting area wishing for her to be okay. I’m happy to report this update that my wish came true. Some would argue that I’m seeing through Disney-colored glasses, because she has several medical conditions and requires a lot of medication, but her conditions are manageable. And, her kidneys actually improved, which was a great, surprising relief to her vet and to me! She is back to bossy, spoiled and adorable self, cuddly as ever, but most importantly, comfortable and feeling well. I understand that this will not last forever, but what is really important is to treasure this time.
When Walt Disney World announced that the “Wishes” fireworks show was ending, I was a little heartbroken. I find it hard to lose things that were symbolic to our relationship. Ben and I watched that fireworks show during our last visit to Walt Disney World in July 2014 from the Pirates and Pals cruise on the lagoon. We both cried as we listened to the lyrics. We’d seen the fireworks show before, but now we really wanted to believe that our wishes, our dreams, would come true.
Ben loving the Pirates & Pals Fireworks Cruise. That joy on his face is my favorite memory of our last trip.
Excerpts from the “Wishes” Fireworks Show
Hear the music from “Wishes”
Star light, star bright,
First star I see tonight.
I wish I may, I wish I might,
Have the wish, I wish tonight.
Oh, a world of wishes,
A world where dreams come true.
So make a wish, see it through.
Dare to do what dreamers do.
Dream a dream.
Set it free.
Trust your heart.
We’re all just children,
Reaching for our dreams.
They’re shining high above us,
And even though it seems so far (so far)
We put our faith and hope on a shooting star.
You know, any wish is possible. All it takes is a little courage to set it free! A wish is a powerful thing—especially when it comes from the heart.
Remember, we must always believe in our wishes, for they are the magic in the world. Now, let’s all put our hearts together and make a wish come true.
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 have rolled their eyes at my saying that Ben and I tossed coins into Cinderella’s Wishing Well after his diagnosis of ALS. We did wish for a cure. That did not happen during his six-year battle with the disease. As I have written before, maybe it is a matter of perspective, but despite that wish not coming true, maybe we did have some pixie dust, because for four of those years, Ben did okay managing the ALS. And, he always had a positive spirit and tremendous determination. That spirit and the love that got us through the awful times are at the core of what is really important.
Walt Disney said, I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter. I have wished to find ways to cope with profound grief and the physical and emotional toll of caregiving. While I am realistic enough to know that this is a work in progress, my wishing and firm belief in the power of pixie dust allows me to carry the good memories, look for the good moments and recognize how Ben and my dad are always with me. Maybe it’s Walt’s philosophy and my whimsical love of wishing that encourages me to take the time to think about what is really important amidst the conflicting emotions and myriad memories, and to embrace the Bibbidi-Bobbidi-Boo that gives me peace. I wish that for all caregivers and patients with ALS and all diseases.
The new school year started last week. It had me thinking about the past several beginnings of the school years. Honestly, they were not great. I was going from a difficult caregiving situation to a challenging and often unpleasant, bordering on abusive, public middle school environment. While teachers were sharing fun summer stories, I sat quietly, smiled and shrugged if anyone asked me how my summer was. I was the caregiver with the dad and husband who were both dying. I did not have fun summers. I did not have fun weekends. After I lost both of them, I was the person in grief. In 2015, was not prepared to return to school just two weeks after Ben passed away, and I went through that school year in a bit of a fog, largely just going through motions. When people looked at me, they saw my experiences in caregiving and losing the people I loved. Well, that and anything Disney-related.
Ben loved Mulan and he really loved the song in this clip, Reflection. I can relate to it, although Mulan was struggling with her identity within her family.
Somehow I cannot hide Who I am, though I’ve tried. When will my reflection show who I am, inside?
I’ve written a lot about feeling like I am floundering because I am no longer a caregiver, which was my role for several years. Caregiving consumed my life. I did what I was expected to do but also what I felt in my heart was the right thing to do. Despite the emotional and physical stress, it was the most important, valuable and loving work I have ever done. The attentive and devoted caregiver was who I was inside and out. Caregiving also revealed to me a strength that I never would have believed I possess, and that my often emotional demeanor would never have conveyed. Once that role was removed, I lost myself and my reflection was blurred.
Now, when I look at myself, I don’t really know who I see. I do have more moments when I feel like the more eccentric and whimsical person of my pre-caregiving days. But, I cannot- at least for now- compartmentalize my caregiving experiences and losses. The truth is that I have embraced my caregiving qualities as positive parts of myself. It is an accomplishment to feel proud of myself, and caregiving did that for me, though it took a long time for me to realize it. My struggle is finding a balance of being true to Ben and my dad, and true to myself, while living in the present. I wonder if and when I am talking about and reliving too much about Ben. I want the Abby I am now to reflect all of those experiences without remaining immersed in them.
Over the summer, I was fortunate to find a new position in a wonderful school. I am back in a high school, which is my preference. As I was gearing up for my first day in that building, I realized that people would not know my story. I was no longer going to be known as Abby, Ben’s caregiver, or Abby who was so devoted to her dad and her husband. I will just be Abby. I guess that offers many possibilities for self-exploration and reinvention. I know that inside myself, I will hold all of my love and experiences. The problem I have is how to reflect on the outside what I feel on the inside and not remain in the past.
When asked to introduce myself at professional meetings or in my personal life, I feel like I’m not really sharing who I am because I do not talk about caregiving, my dad, or Ben and his ALS. I see myself more as a caregiver than anything else. Being my dad’s caregiver and his whole world, and being the person at Ben’s side throughout his battle with ALS are a vital part of how I see myself, even though those actual days are done. Presenting myself apart from Ben, as a person on my own, seems incomplete, and almost disrespectful. I have to keep reminding myself that Ben is still a part of everything that I do and we will always be connected. However, I have to find my own way now.
I do often see signs that Ben is with me. I received one on the second day of school with the students. At this school, instead of bells to signify the beginning and end of class, they play music. It’s quite fun. As students trickled into class, The Beatles’ Twist and Shout came over the loudspeaker. Ben LOVED The Beatles, and it was when Twist and Shout played at a gala for the organization were we met and worked, that, for the first time, Ben pulled me onto the dance floor. From that point on, we danced to it whenever we heard it, even when I had to hold him up as ALS claimed his legs. I found myself smiling instead of crying, as I turned to the kids, whom I don’t really even know yet, and told them that this was the first song I danced to with my husband. Of course, high school girls love romance, so there was lots of gushing. I knew in that moment that it was a sign that Ben was with me as I embarked on new experiences in this new school.
All of our experiences help us grow and evolve. I will always see the people I’ve cared for, loved and lost in my reflection and I am proud and comforted that this will always keep their spirits alive and close. I hope that what others see in me honors them and our love and does justice to all of us.
Music by Matthew Wilder
Lyrics by David Zippel
Performed by Lea Salonga