Today was the last day of school. I eagerly anticipate this day throughout the entire school year. Today, however, I felt terribly sad and lonely. This is the fourth summer that I have approached since Ben died. I guess that I may never enter summer without remembering that summers were difficult for me when my dad and Ben were ill because I juggled caring for both of them. Just as I didn’t get excited about weekends, summer didn’t really represent any kind of freedom or fun, other than being away from the school building. Ben died in August 2015, having spent the summer in the hospital. I still feel twinges of guilt and sadness that I was so angry that, without talking to me first, Ben made the decision to let go his home health aide because he said that I could do everything since I wasn’t teaching. It ended up being only a week before he ended up in respiratory crisis and in the hospital. I don’t like remembering the anger and resentment, though it was an honest part of our experience with ALS. I also remember the days and nights spent at his side in the hospital, when there were terrifying, devastating, frustrating and also many loving moments.
I relate so much to this scene from Up. I like to reminisce about my time with Ben. But, there are times like today, when I want to share the celebration of the end of a school year with him. Like Ellie’s, Ben’s chair is empty. He’s not at home. I’ve gotten better at planning my own adventures, but on days like this I am too keenly aware of being alone.
Every summer has come with melancholy and anxiety, and a regression in grief, but this seems to be the first time I have had a very tearful last day of school. I don’t really know why. I guess I will always be thrown by the unexpected tears and clinging sadness and loneliness. I don’t fight the feelings. I acknowledge them and let myself have the moments. I know that the profound loneliness and loss that I am feeling will fade and I will get back up to speed. I’ll use this time to spiritually commune with Ben, try to work through that difficult summer, and try to balance his absence and presence. Maybe part of my sadness is the change of routine. With school, Ben was part of my structure- I listened to my “Ben playlist” on the way to school every day. I have not firmly organized my next few days. That was probably a mistake. Without structure, I might be able to distract myself, but I might flounder. I’ll have to see how it goes. I’ll try to remind myself that I am going to have new adventures this summer and he will still be with me, just in a different way. That will never be enough, but it is a lot.
Ben and I at Walt Disney World, July 2014. A good summer memory.
Today is the 25th anniversary of the release of The Lion King. I have always adored Simba but had a hard time with how cruel Scar was and how he actually killed his own brother. Still, the animation is incredible and was yet another stellar achievement by the Disney team. As with so many Disney films, I see different insights and am touched in many ways that reflect my own experiences with caregiving and grief. I’ve written about being “surrounded by idiots” and how it has not always been “hakuna matata.” Now, I’d like to share some of the quotes from the film that resonate with me as a daughter, a wife, a caregiver, and a person who has experienced grief. I’m including photos that Ben and I took at Walt Disney World’s Animal Kingdom.
“Life’s not fair, is it?”- Scar
Scar speaks the simple truth. It’s not fair that our loved ones become ill, suffer and leave us. It’s not fair that caregiving is so difficult. It’s not fair that things like insurance and finances have to be concerns when we are already coping with the physical and emotional devastation of terminal illness. It’s not fair that we don’t always have family that is helpful or caring. But, as loving people, although we may lament and vent about the difficulties we face, we also look for share love and positive influences.
Ben told me that he never asked the question, “why me?” when he was diagnosed with ALS. They were the cards he was dealt. So, I never let myself ask that question either. It wasn’t fair, but we tried to make life as good as we could for as long as we could.
We saw Simba! 2007
“I’m only brave when I have to be.”- Mufasa
I have often written about not feeling brave. Though not from this film, my favorite quote, and the one to which I relate best, is actually from Christopher Robin: “You are braver than you believe, stronger than you seem and smarter than you think.” The fact is that my dad, Ben and I were brave when we needed to be. It was terrifying for my dad each time he had to go to the emergency room, or to find out that his cancer had spread a bit more. It was terrifying for Ben as he lost his abilities one by one. They had to be brave and I had to be in control as their caregiver and advocate. Also, as their caregiver, and as a wife and daughter, it was excruciating to have conversations with my dad and with Ben about their right to decide how to live and die. I did my best to put on a brave face and then, I cried when I was by myself. I can only remember two occasions when I cried in front of Ben about what was happening to him and, in those moments, he bravely comforted me. At those times, I felt guilty, because, in my mind, it was my responsibility to comfort him and alleviate his worry. We were vulnerable and frightened, but we showed strength for each other when we needed to. It was a powerful and important lesson.
“Nobody messes with your dad.” – Mufasa
I was always a Daddy’s girl, but also a Mommy’s girl and a Grandma’s girl. I know that I was my dad’s whole world, and I was constantly reminded of that when he was in the hospital and then the hospice. It was difficult to see him struggle with cancer, particularly because he had a very defeatist and negative attitude. I think it’s hard for any child to become the caregiver for a parent and, essentially, take on the role of parent. Growing up, I firmly believed that no one would ever mess with my dad. He was a Marine! Unfortunately, cancer messed with him, and ultimately won, and it was heart-wrenching to watch. But, in my memories, he will always be the Daddy who protected and loved me with all his heart. Nobody or nothing will ever mess with that.
Disney’s Animal Kingdom- 2001. Ben was psyched to meet Baloo!
“Sometimes bad things happen and there’s nothing you can do about it.”- Simba
Another truth. We could not change the diagnoses or wish away disease. We could only attempt to demonstrate integrity and grace while coping with the illnesses and their impact on our lives.
“You said you’d always be there for me, but you’re not.” – Simba
I have definitely thought this. In the end, just like Simba, I realize that Ben and my dad are still here, in my heart, and that our relationships continue, although in a different way. Sometimes that’s enough, but not always.
2007- The Christmas tree decorations at the Animal Kingdom.
“Whenever you feel alone, just remember that those kings will always be there to guide you and so will I.”- Mufasa
This thought is a comfort to me and I can say that, in my experience, it has been true. I still turn to my loved ones for guidance and wisdom. Sometimes, it’s memories of conversations we had and ideas that they shared that help me to move forward. Sometimes it’s just that I know with all my heart that my loved ones are watching over me.
Ben was doing his best Ricky Ricardo impression. 2007
“He lives in you.”- Rafiki, talking to Simba about Mufasa
“Oh yes, the past can hurt. But from the way I see it, you can either run from it, or learn from it.” – Rafiki
Without a doubt, I see within myself reflections of my mom, dad, grandma and Ben. The love we shared, who they were and my experiences with them- particularly as a caregiver for my dad and Ben- have shaped me. Caregiving was challenging and at times downright ugly, but I don’t want to run away from or pack away that time, because what I learned from those experiences and memories is profoundly meaningful and indescribably loving. Now, I want to make my loved ones proud and I want them to know through my actions that they are remembered and loved in every step I take.
Today is the 64rd 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”; 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 because memories played such an important part of our lives when Ben was fighting his battle against ALS. Memories 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 Disney World. 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 some time after Ben died. I know that some people think that this blog is a way to 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.
Coincidentally, as I reflect on the importance of my memories, I realize that today is also the 23rd 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 was when people told me it was time for me or time to take care of myself. I don’t really like to put the spotlight on myself. It was particularly difficult to go out and be distracted and even 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, my memories don’t have to end there. I can delve into new adventures that will 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 made 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 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
Today is a very exciting day for Toy Story fans, with the release of Toy Story 4. I already have my tickets to see it tomorrow morning, and I have my tissues ready, but today is already an important day in Disney history. On this date in 2002, Lilo and Stich (Walt Disney Pictures) was released. I have loved Stitch since I saw that film. When Ben and I went to Walt Disney World and I had read that Stitch could be found at the Magic Kingdom, I was on a mission to find him. Ben was very patient! In honor of the film and my buddy Stitch, here are some photos from our visits to Walt Disney World over the years. Ben liked taking pictures of me with Stitch because he was my good buddy and Ben got a kick out of that. I look at those photos and even though Ben was the photographer, in my mind and in my memories, he is so present in those moments and I can vividly see him laughing. I am so grateful for these memories.
Halloween with my buddy in 2010. Ben could still take photos at this point, which makes this picture especially sentimental.
I think the funniest memory I have is from our 2012 trip. Walt Disney World has many and great accessible restrooms, which made life much easier for Ben. I would get Ben situated and wait outside because he couldn’t walk to lock the door. Also, I could hear him if he needed assistance. One day, while I was waiting for Ben, Stitch walked by and I yelled hello to him. OK, yelled a lot, with much waving. Moments later, Ben called to me. As I helped him into his scooter, he couldn’t stop laughing, imitating my calling Stitch and saying that he started wondering how he was going to get himself out of the bathroom because he knew Stitch was one of my favorite friends and he thought I might abandon him! I did not! And, I’m not telling if I thought about it!
I love this little guy!
I hunted him down at the Animal Kingdom in 2007!
On our last visit in July 2014, Ben knew that one of the things I had always wanted to do was have breakfast at the Polynesian Hotel with Lilo and Stitch. I had not mentioned it because it was a long commute from our own hotel and I didn’t want to tire Ben. But, he wanted us to have that experience. I think Ben wanted to laugh at me gushing at Stitch, which, of course, I did! Stitch was his adorable self, as was Lilo. They were very attentive and considerate of Ben and his inability to get out of his seat. It was an incredible time that I will never forget, particularly wonderful because it was a brand new memory, as opposed to memories we were trying to recreate to almost try to turn back time to the days before ALS. I will never forget the magical connection that Ben and I felt when we were at Walt Disney World.
Music by Matthew Wilder
Lyrics by David Zippel
Performed by Lea Salonga
Mulan(1998) Walt Disney Feature Animation
Today is the anniversary of the release of Mulan. It was actually the first Disney film Ben and I saw together when we began dating. It is hard to believe it was 21 years ago. At that time, Ben was not quite the Disney fanatic that I was, but he wanted to impress me so we made frequent visits to the Disney Store and he took me to see this film on opening day in what became our tradition of opening day viewings of Disney and Pixar films. As it turned out, Ben loved this film and he was very happy to find Mulan ornaments for our Christmas tree. He particularly loved the song in this clip, Reflection. I can relate to it, although Mulan was struggling with her identity within her family and I am struggling more within myself.
Somehow I cannot hide Who I am, though I’ve tried. When will my reflection show who I am, inside?
Ben loved Mulan and Buzz Lightyear!
I’ve written a lot about feeling like I was, and still am, floundering, because when I lost my dad and Ben, I also lost my role as a caregiver. 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, meaningful 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.
Because caregiving was so much of who I’ve come to be, it is difficult for me when I realize that people I meet now do not know the story of Ben and my dad. I am no longer known as Abby, Ben’s caregiver, or Abby who was so devoted to her dad and her husband. Being my dad’s caregiver and his whole world, and being the person at Ben’s side throughout his battle with ALS are aspects 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.
Now, when I look at myself, I see much of the former, more eccentric and whimsical Abby, though I was changed by seeing my dad and Ben face death and by having the responsibility of caregiving. I still do struggle with compartmentalizing my caregiving experiences and losses. The truth is that I 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 after the fact for me to realize it. My struggle has been finding a balance of being true to Ben and my dad, and true to myself, while living in the present. I want the Abby I am now to reflect all of those experiences without remaining immersed in only memories.
I have managed to integrate my caregiving into volunteer work, which is great. I did a small program with my local ALS chapter for children who are affected by ALS in their families. It was great because my background is in arts education and I care deeply about children. I also made a connection and volunteered for an organization called Hope Loves Company, which serves children who are affected by ALS in their families. I attended one of their family camps and did a scrapbooking workshop, which the kids (and I!) enjoyed. I know the importance of memories and I hope that creating a scrapbook leaves a lasting idea of ways to express their experiences and feelings. I look forward to continuing to volunteer. I am thrilled to see that my blog has built some new connections and provided support to caregivers and, in some cases, to people with ALS. I will continue to explore ways to reach out to this community and to the community of young caregivers. In this new phase of my life, my “new” and maybe somewhat “improved” self is exploring the possibilities for self-exploration and reinvention that will hopefully allow me to make a difference in the lives of others and maintain my tie to Ben, my dad and caregiving. I would love to know that they are proud of me and happy that they are continuing to inspire me. I know that inside myself, I hold all of my love and experiences.
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.