Snow White and the Seven Dwarfs Walt Disney Productions
Less than a week ago, I wrote and posted my annual letter to Ben on the anniversary of his passing. This year was a milestone year- ten years. Since then, I have been feeling quite low. Ironically, I have been thinking of the song With A Smile and a Song from Walt Disney Productions Snow White and the Seven Dwarfs (the original).
There’s no use in grumbling When the raindrops come tumbling Remember, you’re the one Who can fill the world with sunshine
In my caregiving days, I felt compelled to fill the world with sunshine for Ben and my dad. Indeed, my dark hair, extremely fair skin, love of animals, and high voice brought comparisons to Snow White, despite my lack of love for housekeeping.
For the last few days, I have not been able to find a smile and a song. I can’t seem to stop crying. It didn’t help that I was recovering from walking pneumonia, but I have found over the years that the days immediately after an anniversary date can hit me harder than the actual date. The closest to an explanation I can determine is that I focus so much on devising a way to honor these dates that I am filled with a kind of energy and satisfaction. After it passes, I flounder and am left with only the sadness and feeling of loss.
I mentioned in my last post that previously, I would travel home on the train on the date of Ben’s passing. This year, I traveled to my destination on that date and then walked around Cold Spring, NY. I realize that the time spent on the train just going home,and not figuring out how to spend the day, gave me the time I really needed to think about Ben. In fact, I often wrote my annual post on the train where all of my thoughts revolved around him. Although I wrote in my hotel room in the evening, the day was too eventful – distracting, actually- and not reflective enough. Now, the sadness has caught up with me.
I can’t seem to fill my own world with sunshine right now. And, that’s okay. The feelings are real. After all, despite bringing cheer, when there was a need for serious conversations, I did validate the fear and sorrow of Ben and my dad. It’s a tricky balance. In fact, one of the things that makes being a caregiver so challenging is countering the desire to be positive the need to be realistic and stay on your toes to solve problems without being paralyzed by emotions.
Grumpy at Walt Disney World’s Magic Kingdom, July 2014
I’m posting these feelings because I think it’s important to embrace all the ebbs and flows of emotions in caregiving and in grief. As Rafiki from The Lion King said, “The past can hurt. But the way I see it, you can either run from it or learn from it”. I have given myself permission to shed the tears and reflect on events. Unlike Snow White, I am not someone who can just turn the day around with a smile and a song. I learned that I need quiet time for reflection. Tears are okay. I know I’ll come around in my own time. Actually, taking the time to sort through my feelings and write this post has been helpful. And, knowing the ebbs and flows of grief, I know that there is truth to needing rain to get a rainbow. I guess there is a little Snow White in me, after all.
If you’re struggling, you might want to try to write your own feelings, too. Journaling can be very helpful.
We met Snow White during our last visit to Epcot, July 2014.
Today is the 70th anniversary of the release of Disney’s Lady and the Tramp. It was always a favorite of Ben’s and mine. We actually loved to sing the “Siamese Cat Song” which, I know is now understandably considered politically incorrect but which still holds fun memories because of the cats and their mischief; in fact, I used to sing it to my first cat, Tiffany (but she preferred “Born Free,” to which she actually meowed along!)
A poignant quote came from Tramp to Lady, when he told her, “Aw, come on, kid. Start building some memories.” I am always drawn to quotes about memories. Just last week I wrote about my memories about my Aunt Eleanor. Memories played such an important part of our lives when Ben was fighting his battle against ALS. They became increasingly significant to Ben, particularly as he became more homebound. He loved to look at our photos and videos from Walt Disney World and to listen to the theme park music soundtracks. We could do that for hours. It was my motivation for designing the photo calendars, throw, shower curtain and towel (click here to read more about them)– Ben was surrounded by our photos everywhere in our home. It’s nearly three years since he’s left and I remain surrounded by those things. They are a comfort for the memories the photos hold and for my memory of the happiness that I gave to Ben with those gifts.
Dessert at Tony’s Town Square Restaurant- The Lady and the Tramp-themed restaurant at Walt DisneyWorld. The Lady and the Tramp drawings were done with caramel- pretty fabulous!
We were so fortunate to be able to visit Walt Disney World four times after Ben’s ALS diagnosis. Each time, we tried to recreate our favorite memories, attending our favorite shows and visiting our favorite attractions. We did, at times, lament the attractions that Ben could no longer ride. But, we laughed that we could take the “It’s a Small World” boat repeatedly because there was never a long line and we got a boat to ourselves. Ben’s attitude was amazing. He focused on what he COULD do and, thanks to the amazing Disney cast members, we could do almost everything.
Recreating memories was, however, a tricky endeavor. Given Ben’s physical changes, it had the potential to be incredibly fun or incredibly sad. However, we were so grateful to be able to return to a place that was so important and filled with joyful memories. At Walt Disney World, we were distracted by the excitement and caught up in the fantasy. Ben loved and frequently commented about that. Once home, when Ben looked at photos, he scrutinized how he looked and how his abilities had diminished from visit to visit. For me, looking at photos is sometimes filled with splitting my world into pre-ALS and post-ALS distinctions and observations. Still, more than the physical changes, I see the joy on his face.
Our final visit to Walt Disney World in 2014 was uniquely memorable, not only because we were not sure that we would ever get there again, but also because it was filled with the creation of new memories. Frankly, I was worried that Ben would be disheartened at not being able to do a lot of the things that we used to do. Also, he could not eat many foods, so going to the restaurants that we always loved might have been an upsetting experience. So, I organized several surprises- new and different events that gave us the opportunity to create new memories. My plan was a resounding success, which makes me so proud and grateful. I wrote about our visit in a prior post, which you can see by clicking here.
Walt Disney World 2002, the pre-ALS days. We didn’t kiss over spaghetti, but we did kiss Eeyore!
Ben and I had 16 years and a dozen visits to Walt Disney World, all filled with wonderful memories. When I was the caregiver of my dad and Ben, those memories sustained me and took me from one Walt Disney World visit to the hope of another, and I lived vicariously through my friends, reading about their adventures on Facebook and occasionally, and proudly, posting photos of Ben and me at Walt Disney World or out in our neighborhood when he was still able to ride his scooter. Our friends did like to see him out in the world. I immersed myself in those memories for a long time after Ben died. I know that some people have thought that this blog is a way that I stay hidden in those memories and in the past, but the perspective I gain and thoughts shared with other caregivers in this writing process lead me forward. It is also my hope that they offer tools and perspective to other caregivers.
Coincidentally, as I reflect on the importance of my memories, I realize that today is also the 29th anniversary of the release of Disney’s The Hunchback of Notre Dame. I think about what the gargoyle, Laverne, told Quasimodo: “Life is not a spectator sport. If watching is all you’re gonna do, you’re gonna watch your life go by without ya’.” This quote holds an important message for me. I think that one of the most difficult things for me after I lost my dad and Ben was when people told me it was time for me or time to take care of myself. For one thing, I don’t really like to put the spotlight on myself. It was particularly difficult to go out and be distracted and even feel somewhat happy, just to return to an empty apartment and reminded of the loss and alone-ness, as well as guilt for even trying to enjoy myself. I preferred to put my energy into helping Ben relive and create new memories and, after he left this world, I took pride and comfort in thinking about those memories. The truth is that I will always love to visit with my memories of Ben, the good and bad times. But, I learned that my memories don’t have to end there. I now delve into new adventures that become a part of my treasure trove of beautiful memories. I do not have to live vicariously through other people.
The Hunchback of Notre Dame 1996 Walt Disney Pictures
A sadness looms over my summers because they represent the most difficult times in Ben’s battle, and ultimately when he succumbed to ALS. However, I proactively make plans to do things I love: travel to see my friends, take part in some animal adventures, do some volunteer work, and continue to work on my blog and manuscripts while formulating new ways to reach out to caregivers.
Although sometimes I do prefer to be a spectator in life and to get caught in fantasies of what I think I would like my life to look like, I don’t want my life to go by without me. It helps me to find peace in the knowledge that Ben’s spirit will always accompany me as I follow my life’s paths, make some dreams come true and make new memories.
My photo collage calendar filled with wonderful memories and new events that will bring new memories. where Ben will be present in my heart
I retired from teaching at the end of January, so I suppose it stands to reason that I am reminiscing, reflecting, and once again, reshaping my life. Taking an intensive kidlit poetry class certainly gave me an opportunity to sort through my thoughts in a creative way. In fact, a previous post included a poem that I wrote to mark Ben’s birthday (click here for that post).
Now retired, here I am with the freedom to pursue my own dreams and goals. I write, walk in Central Park, go to the theater, see friends, have spontaneous outings. I recently returned from a fantastic river cruise to the Netherlands. I am grateful for all the lovely experiences.
At this rather introspective time, the song that seems to keep playing in my mind is How Does A Moment Last Forever? from Disney’s live action Beauty and the Beast (2017).
I have come to realize I live my life in the way described in these lyrics.
How does a moment last forever? How can a story never die? It is love we must hold onto Never easy, but we try Sometimes our happiness is captured Somehow, a time and place stand still Love lives on inside our hearts and always will.
In so much I do, I find that I feel and am motivated by moments that filled me with love and remind me of the people I have lost and loved. I have been fascinated with the Netherlands, which I knew as a child only as Holland, from the time that my aunt Eleanor brought me a little doll from there. While I was in the Netherlands, aunt Ellie was often my guiding light. Since today is would be her birthday, and June is Alzheimer’s and Brain Awareness Month, this is a perfect time to highlight her influence on my life. I have summed it up in this poem, entitled Footsteps.
When I was a child, I found everything about Ellie exciting- she spoke Spanish (and some French, too), she traveled on airplanes, she took me into New York City. At one point, she took a sabbatical and traveled all over Europe for a year. I don’t distinctly remember her being away, but I remember the photographs she took. She also brought me dolls from many countries she visited. I still have most of that collection. For a while, we shared a room, but then she moved into New York City. The city scared me when I was young- too loud, too crowded, too much. But, Eleanor made the city not only accessible, but intriguing and fun. We went to shows, museums, and the Central Park Zoo. To this day, if I am in the park and it is near the stroke of an hour, I wait to watch the animals dance to the music of the Delacorte Clock. And, I always think of Ellie. I took this video not long ago.
My dad had a subscription to National Geographic Magazine, and he instilled in me a fascination with the world. He even gifted me the children’s edition of that magazine and I saved a few of my favorite issues, including, not surprisingly, the opening of Walt Disney World. But, Ellie traveled and SAW the world. I couldn’t wait to learn Spanish and to travel. My mom and I accompanied Ellie and a few of her students to Mexico when I was in the eighth grade. It was my first time on an airplane. I only had one year of Spanish behind me but I was eager to meet new people and try to communicate. Just like Ellie.
I love this glamorous picture of Eleanor.
Ellie took me to my first book signing for an artist I’d never heard of- Erté- but it was so exciting to meet him, feel Ellie’s delight, and discover his beautiful work. That has led to a lifelong love of collecting signed books and meeting authors and other artists. When she could not get out as often due to Alzheimer’s disease, I continued to go to signings for her, bringing her signed books and CDs. I probably did that as much for myself, to hold dear as much as I could of our relationship. Still, I have an ever-growing collection of signed books. And, I’m writing books, too. I know she would love that.
This is a book by one of my favorites, Wendy Wasserstein. It is about a little girl who loves her aunt Louise, who takes her to her first musical. At the signing, I purchased a book for Eleanor, and I told Wendy that she was that aunt for me. Wendy inscribed the book, “To Eleanor, who IS Aunt Louise.” I don’t have that book- don’t ask.
As Alzheimer’s seized more and more of Ellie’s memory, I had to hold onto my own memories of our time. For a long time, I continued to take her to the theater because it was a love that we shared. I was trying to hold onto the memories and the love attached to them. One of my funny memories was taking her to see a Yiddish production where, at intermission, they distributed pickles from barrels, just as in the old days on NYC’s Lower East Side. The next day, she had completely forgotten the show and being with me, but she told people that she had eaten delicious pickles. They didn’t believe her but when it was casually mentioned to me as an anecdote about what was happening to her mind, I confirmed it. As is often the case, the memory of the pickles was something that reached way back in her past. The not so funny memories were of returning home from a day at the theater with her to a frantic voicemail asking if we were going to see each other that same day. I was able to reason that at least she enjoyed the experiences in the moment. I stopped these outings when they became stressful and unenjoyable for both of us.
This was Eleanor’s playbill from the original run of The King and I. She and I went to one of Yul Brynner’s final performances in New York, when he was too ill to perform a few numbers. It was an unforgettable experience.
Even though Eleanor would get lost somewhere in every conversation, I could conjure the past for her. She had been a Spanish teacher and for quite a while she retained her knowledge of Spanish, and even of her lesson plans. We looked at the photos of her travels that captivated me as a child and when I would ask her where she was in a particular photograph, she sometimes laughed and said, “Y’know, I ask myself that question every day.” I admired that she kept her sense of humor about what was happening until it was beyond her grasp.
Religion and family were areas of conflict between us. Eleanor was dutiful without limits, but I had more boundaries and due circumstances regarding religion and other events, I put a distance between myself and some family members. Eleanor could not understand this and it led to tension at times. Scars remained, though none of that mattered when I visited her as her Alzheimer’s progressed. She did not remember my name, she did not remember our actual relationship, but as I like to describe it, I know that I was floating around in her mind. I could still make her laugh and for a long time, her eyes twinkled when she saw me. Alzheimer’s disease could not steal our love. It’s just like the lyrics to the song.
To celebrate my retirement, I treated myself to a holiday abroad. I was always delighted by the Delft pieces that Ellie brought back from the Netherlands. I loved the little clogs on my doll. I had often heard and seen pictures of the tulips in springtime. It didn’t take long to choose that as my destination. I had never been on a group tour, nor had I been on any kind of cruise. I never wanted to go on an ocean cruise- I would much prefer to be ambling around quaint towns than being stuck on the water in a floating hotel. But, I was assured that the river cruise would be different. Indeed, the canals and waterways were a vital part of the history and development of the Netherlands. And, it was beautiful. I could always see the land, and even observed people clamming, boating, and otherwise living a life so different from my own.
While I generally expect to feel the presence of Ben and my dad, who, of course, were with me, this holiday was about Eleanor. I felt like I was often looking through her eyes, seeing the way she would have seen. I look a little like Ellie, and we have many of the same mannerisms, which I often noted when I was teaching. I felt her presence and all that we did share while I was in the Netherlands, particularly in the very charming little towns. We both would have delighted in the Delft, the tulips, the architecture, the cafes, and taking pictures of windows and doors and other obscure but delightful objects. Since we generally clashed on topics related to religion, I felt like she joined me with pride on my visit to Anne Frank’s house (actually, this site transcends religion and should be visited by everyone). I was moved by all the stories I heard about World War II and the Nazi occupation, but I think especially so because I was thinking about how much Ellie would have focused on them. Although I have never felt deeply connected to being Jewish, this experience did weave a thread to Eleanor’s own deep connection. As an aside, today also happens to mark Anne Frank’s birthday.
The very decorated shoe is the one Eleanor brought back, along with the tiny wooden shoes. The little boy doll did not make it through my adulthood. I added the Miffy shoe, the squirrel and penguin. Also, I found it so intriguing that the Christmas tree ornament with the windmill was in the shape of a Jewish star. The salesperson had no idea if it was intentional, but I like to think that it was. The two outer plates were brought back by Eleanor from Delft. They hung in our kitchen and I was attached to them. I found the Schnauzer plate here in NYC and loved the Delft look so we added it. The Pez dispensers and other cuties- all mine.
I came home with some Delft pieces that I placed next to the Delft pieces from Ellie’s collection. I also brought back some Delft Christmas tree ornaments, which I’m sure she wouldn’t have appreciated, but that’s ok. We had our differences and I think it’s fair and important to acknowledge them. I realize that in so much I did, the way that I observed, and what I chose to bring home with me, I am making the moments last forever and holding onto the love. I hope you do, too.
Happy birthday, Eleanor. You are missed, loved, and honored.
Merida at the Walt Disney World Magic Kingdom Parade, July 2014
It has been a while since I have written here. Some things remain the same. The holidays were bittersweet without my loved ones. February remained a melancholy month filled with too many sad milestones. I acknowledge the dates and let myself feel and trod through the days in whatever mood I’m feeling. So, I guess I am more comfortable with my feelings, and I don’t feel the need to defend myself. That’s a good thing.
I have been thinking about this quote of Merida’s from Brave. “You control your destiny — you don’t need magic to do it. And there are no magical shortcuts to solving your problems.”After caregiving and grief, it took me quite a while to reshape my life. I wanted the magic that Merida knew I didn’t need, and I believe it did help, but I have been able to create a life and pursue some dreams. I am always grateful. Reshaping my life has included being intentional in honoring important events.
I have come to realize that on important dates related to Ben—his birthday, the day he died, our anniversary—I like to be on trains. He loved trains and we traveled by train to many lovely getaways. Last month, I spent his birthday returning from my own little getaway in delightful Hudson, New York. I enjoy getting away to quaint locations and having time to reflect and work on my picture book manuscripts. Although I felt a bit alone, I also felt Ben’s presence, and in those moments, I tend to look at things through his eyes, especially on the train. These retreats are a way for me to be in the present but also honor Ben and good memories. Hudson, by the way, was a favorite destination and I look forward to future visits.
I wrote this poem when I was in Hudson. I was taking an intensive poetry/lyrical language class.
Today was also an anniversary. A date about myself- that’s unusual. Three years ago, on this date, I began radiation as part of my breast cancer treatment. Thankfully, I am a survivor, and I have a wonderful medical care team. I remember my first day of radiation and crying as the nurse explained what would happen. She was so kind and understanding. But, the pain no one could take away was how alone I felt. I was always at every appointment and procedure with Ben and my dad. I was at the hospital and hospice every day. I don’t have that person, though as I have said many times, my incredible friends are always there when I need them. To be fair, my treatment was during COVID, when it was not always possible for anyone to have company. Still, I felt alone. That memory remains vivid, and it hovered in my mind today.
Throughout my treatment Central Park was a vital part of my healing. Every day after radiation, I walked to the Park. I loved the squirrels and researched the nuts and berries that were good for them. They came to recognize me and would join me on the bench. I also came to love the cardinals and blue jays, which I have written about. It felt good to spend today reflecting on that time. There were many squirrels around, which was fun and joyful. Cardinals and blue jays greeted me, which is always a wonderful sign that my loved ones are with me. Seeing the cherry blossoms starting to bloom also felt like a positive sign. I do look for signs. But, I find them. Maybe there’s some magic in there. I like to think so. I also proudly recognize that I made the choice to reconcile the sadness with positive action. That did not come easily or quickly.
I find myself always looking for ways to engage with life and to learn, while also embracing and honoring my memories. Days like today make me feel like I have taken some control over my destiny. Still, I’m not letting go of magic, dreams and pixie dust.
Today, February 15, would be my dad’s birthday. It’s a strange and melancholic kind of time, with the anniversary of his passing just two days ago and Valentine’s Day yesterday. But, there are so many good memories on which I try to dwell during these down days. I was a Daddy’s girl and I was his life and his caregiver. I wrote more about him a couple of days ago, on the fourth anniversary of his passing. Click here to read that post. My dad is always in my heart and thoughts, and at this time I would like to take the opportunity to put him front and center and share glimpses of his life. My dad never wanted to make a fuss over his birthday. But, we always did. And he deserved it.
I remember that when I prepared this video a few years ago for his birthday that my dad was not in so many pictures because he was always the one taking the photographs. The background music is From The Hall of Montezuma, the USMC hymn. He would love that. He loved dogs, the USMC and his family. The camouflage coat you will see was an homage to the USMC, and he liked telling people that he wore it when he went outside and tried to hide among the greens from his mother-in-law, my grandmother. I had to include it in the slide show.
Who would have thought that my dad and Cinderella and I would have any connection? Well, they do. Cinderella and my dad share a birthday, since the movie Cinderella was released by Walt Disney Productions on this date in 1950. Cinderella was my favorite princess when I was a child. She remains dear to my heart because there is more to Cinderella than what meets the eye. She appears simply sweet and naïve, but she had feistiness and determination, and also a loyalty to her father’s memory to which I can wholly relate. It was very hard for her to lose both of her parents, but she let their lessons and moral compass guide her. That’s something I completely understand.
Cinderella knew the importance of integrity and the power of dreams, and in the end, all of those qualities got her the love of the prince of her dreams and a position of respect! She knew at her core that, despite her stepmother and stepsisters treating her horribly, “They can’t order me to stop dreaming.” There’s a good life lesson. I know that people sometimes think I’m unrealistic because of my Disney love and its connection to wishing and dreaming. On the contrary, as the caregiver for my dad and for Ben, I was hit with harsh realities on a daily basis. Dreaming and wishing were my escape. They encouraged me to find creative ways to solve problems. And, they allowed me to envision a future where my dad and Ben had peace and comfort and I could stand alone and live happily with them in my heart. As I worked through grief, which will ebb and flow forever, dreams helped me to redefine myself and reshape my life. Now that I am retired, I am taking the time to pursue some dreams. No one can tell me that dreams are not valuable and important.
Maybe you don’t literally talk to your Fairy Godmother, but I imagine that a lot of readers have had a similar conversation with someone, or with themselves, and questioned their faith that they could handle things or that things would be okay.
During caregiving days, when my dad and/or Ben was struggling, knowing that in the end I was going to lose them, it was easy to lose hope and optimism. In those times, I had to thank goodness for the insight and “Bibbidi-bobbidi-boo” of Cinderella’s Fairy Godmother. For me, the dreams and the wishes got me through very difficult and sad days of terminal illness and caregiving and feeling that nothing I did really mattered. There were no cures, no one was going to get better, and things were becoming more difficult. But, I could dream, and those dreams helped me keep the faith.
There is a song in Cinderella called, So This is Love. Though the song is about romantic love, the title is significant. When we are watching someone struggle with illness or we are struggling with caregiving responsibilities, we accept these challenges, and embrace them, because this is love. It’s that simple. And, that complicated.
At the heart of the film is the song A Dream is a Wish Your Heart Makes.
A dream is a wish your heart makes When you’re fast asleep. In dreams you will lose your heartaches. Whatever you wish for, you keep. Have faith in your dreams, and someday Your rainbow will come smiling through. No matter how your heart is grieving, If you keep on believing, The dreams that you wish will come true.
I’ve always been a dreamer who wished for the fairytale ending. Sometimes I think that it’s a matter of perspective. I do believe that my wish came true that my dad and Ben are both at peace, even though grief is hard for me and times like these past few days are quite sad and lonely. I’ve written before that I will wish for and dream about cures for ALS, and also for cancer and the many other horrible diseases. Sometimes it seems futile, but I remember that Fairy Godmother said, “Even miracles take a little time.”
My dad called me his Private Benjamin, but I was also his Cinderella, and I will always keep his spirit alive and let him guide me.
