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 knew 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.
Fun times pre-ALS, 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
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!
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.
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.
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