Disney

The Loving Sense of Scents in Memories

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.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2011- This is one of my very favorite pictures of Ben because he was so full of happiness and laughter.

One Dance, Many Memories

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 

Happy 35th Anniversary, Epcot!

ALS,Caregiving,Epcot,Walt Disney World

July 2014

Learning about this anniversary brought a big smile to my face, as I remembered how much Ben enjoyed Epcot, and how much fun we had there together. I consider it a gift that, in the face of difficult memories of ALS, our experiences at Epcot were so positive and full of joy.

After Ben’s diagnosis, we splurged and stayed at the Boardwalk Inn, because it was the hotel that always impressed us when we strolled the Boardwalk, and we never know which visit would be our last. As it turned out, the Boardwalk was a perfect location, because Ben could easily scoot to the back entrance of Epcot by the World Pavilions, which he absolutely loved. The World Pavilions have less attractions requiring transfers, so he had the freedom to ride around in his electric wheelchair. As I’ve written in my post about our visits to Walt Disney World, another highlight of Epcot was that during the Food and Wine Festival, we could try a variety of foods from the kiosks and then find a discreet place to sit where I could feed him and we could take as long as needed.

We met Mickey and many of his friends, laughed with Crush, and Ben played the air guitar along with the bands he loved to listen to.

I will always be grateful for the good memories of our time at Epcot, and for the kindness and graciousness with which the Disney cast members accommodated and welcomed Ben.

Thank you, Epcot, and may your anniversaries continue to infinity and beyond!

Here are some favorite memories from visits to Epcot. They range from our carefree, pre-ALS days to our last visit in 2014. You can see some of the physical effects of ALS on Ben, but his attitude was always great!

I took this in “Mexico” during our first visit together to Walt Disney World, in 2001, when there were no thoughts of ALS or physical limitations.

ALS,Caregiving,Epcot,Walt Disney World

Fun times pre-ALS, 2006

2006

2006

This was Ben’s first excursion in the scooter, May 2010

Epcot shopping in the rain in our matching Mickey and Minnie rain ponchos! May 2010

October 2011

Ben needed a cane but he walked to Mickey! 2012

July 2014. Things were harder to do, but Ben was still smiling! Below: air guitar at the England Pavilion. He always looked forward to hearing the live bands, and was especially thrilled when they played The Beatles!

 

Ten Things I Learned About Caregiving From Mary Poppins

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:

  1. “In every job that must be done there is an element of fun.”

Mary Poppins 3

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.

  1. “Worrying won’t help anyone.”

Mary Poppins 4

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.

  1. “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:

  1. “Never judge things by their appearance…even carpetbags. I’m sure I never do.”

Mary Poppins 7

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.

  1. Sometimes a little thing can be quite important.

Mary Poppins 1

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.

  1. Best foot forward. Spit spot.

Mary Poppins 6

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!

  1. 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

Mary Poppins 5

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.

  1. 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!
Mary Poppins 2

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!

  1. Supercalifragilisticexpialidocius

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:

  1. “Mary Poppins. Practically perfect in every way.”

Mary Poppins 8

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.

Do The Emotions of Grief Turn You Inside Out?

Inside Out (2015) Walt Disney Pictures, Pixar Animation Studios

Disney Pixar’s Inside Out is a very clever and colorful story, meaningful to children and adults, which takes you into the headquarters of 11-year old Riley’s mind, where her emotions- Joy, Anger, Fear, Disgust and Sadness- vie for attention, with Joy trying to keep the other emotions in check. In caregiving and in grief, my emotions have been all over the place, often at the same time!  After all, even on a regular day without any unusual circumstances, our emotions can run the gamut, right?

It has been two years since I lost Ben, and 3 1/2 years since I lost my dad, and I continue to feel a wide range of emotions. I probably always will. I read many comments from others in grief whom, after what they, or others, consider to be a reasonable amount of time, ranging from a matter of weeks to years, wonder if they should be less affected by the sadness. I have questioned my own grief and emotions, too, wondering if I was handling things “normally” and if should be having the setbacks I have. What I have found is that, although the highs and lows are difficult, I need to give myself time to just feel. Although I tend to bounce back more quickly now, setbacks happen. Conflicting emotions happen. In fact, they happened over the past few days.

I have been having some computer issues and decided on Thursday that I had to organize my files in order not to lose any data. I had to decide what files to put on each computer and on external drives. I am not naturally organized, so this is not an easy task. I have postponed this endeavor because I miss doing this kind of thing with Ben, who was a computer wiz, professionally and as a personal passion. I feel like I need a bigger hard drive, something Ben would have determined and resolved with ease. I am working around it, putting files on external disks and the Cloud. I’m frustrated and so sad. I finally had a complete meltdown, crying and telling Ben how much I missed him and how the computer things were no longer fun without him.

I trudged through and although I’m pretty sure I’m not setting things up efficiently, I’m working through it. I hired a great tech guy once before and I can do it again. But, of course, he’s not Ben. He doesn’t know how I think the way Ben did.

On Friday morning, I plugged my brand new flash drive into the television to watch a film. Instead of the film, suddenly and unexpectedly, Ben’s face filled the screen, accompanied by The Beatles’ In My Life, his favorite Beatles song. It was a video that my lovely and thoughtful friend Maria made just after Ben died, comprised of pictures of us. Unprepared to see it, I burst into tears, though I remembered each picture with love and even smiles. I was completely unnerved. I could have stopped the video, but I felt compelled to experience all of the emotions. As I’ve written before, sometimes it’s perfect to have a good cry.

The video that appeared on my television screen.

If that did not unnerve me enough, the next video began playing automatically. It was the portion of my dad’s funeral when the USMC folded the American flag and presented it to my brother, followed by them playing Taps. I had very mixed feelings about recording it, but Ben was very upset that he could not attend the funeral, and it meant a lot to him to watch the video as a show of respect and love for my dad.

I felt weak. Again, I could have turned off the video but I had to watch it. I heard myself crying on the video, echoed by my crying on my sofa. My dad would have been very honored by the ceremony, and, at least amidst my tears I felt a sense of pride that I was able to arrange this as part of his funeral. But, it was simply too much unexpected emotion.

I’m sure that those video files ended up on that new flash drive because I was transferring many files from one device to another. But, I do not remember putting any videos on that flash drive except for the movie I was going to watch. I certainly did not remember seeing and transferring those videos. Things like that come across to me as signs from my dad and Ben that they are with me. But, they are setbacks for me. All of the sadness and tears, along with the good memories, swell within me and turn me Inside Out. I know that there are people who feel that it’s been more than a couple of years since these losses and I should be able to deal with these moments better. Maybe they are right. But the losses were heartbreaking for me and will always be profoundly felt. Unanticipated events will always trigger sadness. But, the emotion is okay. In fact, I feel entitled to it. In my mind, it means I was fortunate enough to have love and relationships that were wonderful enough that I do miss them. The sadness, anger, fear and frustration of caregiving and ultimately, grief, are intermixed with the love, satisfaction and deep relationships that existed and grew throughout it and now, afterwards. Although I was shaken by the video footage, and I did cry, I was grateful for the visual reminder of the love that was there in good and bad times. This film clip from the Inside Out struck me because it showed that we can aim for joy, but it’s just not that simple, because our experiences are comprised of so many emotions and moments of significance, and sometimes joy arises from or coincides with anguish in unexpected ways.

The fact that I find these hard times to be setbacks means that I am not living in the grief, I’m just visiting with it from time to time. Emotions coexist within us and, I suppose they each need their moments in the spotlight, whether or not we are prepared to indulge them when they are triggered. Grief has its own timetable and we each journey through grief in our own way, at our own pace. Sometimes people are not patient with us, but we must be patient with and kind to ourselves.