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On the Anniversary of The Jungle Book- A look at Caregiving, ALS and Fighting Shere Khan

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Disney’s Animal Kingdom- 2001, pre-ALS. Ben was psyched to meet Baloo!

Today marks the 53rd anniversary of Disney’s The Jungle Book. I love this classic tale of Mowgli, a man-cub who is raised in the jungle, nurtured by some animals and hated by Shere Khan, the tiger who hates man and is determined to kill Mowgli. I even enjoyed the live action remake. I am moved by the sweet tale of Mowgli’s relationship with Bagheera, the wise panther who teaches and watches over him, and Baloo, the big goofy bear who is a great and caring friend. I always smile when I watch this film, because Ben loved Baloo and fancied himself a big,cuddly bear- a description with which I must agree! There is much discussion about racism in what we consider our treasure trove of classics, including many Disney films. I do believe that it is important to acknowledge and address these issues. Caregiving knows no boundaries. When I watch the film, I cannot help but reflect upon how much The Jungle Book has to say about a caregiving relationship and how Ben and I confronted ALS.

Bagheera has all the qualities of a good caregiver: patience, the ability to listen and reason, understanding of Mowgli as a man-cub within the jungle environment, willingness to let Mowgli test himself, reliability, intelligence, common sense and loyalty. Who could ask for more in a caregiver? Baloo is a great buddy, and he and Mowgli have a deep friendship and love, but Baloo also needs the guidance of Bagheera. When Baloo resists the reality that Mowgli needs to return to the “man village” and be around people like himself, Bagheera needs to remind Baloo that although he loves his little buddy and thinks of him as a son, he has to see the big picture in caring for Mowgli and that he has to think about what was best for Mowgli and not just for himself. Those are tough choices and I remember them well. Caring for Ben meant never losing sight of what our priorities were. Like Baloo, there were many times when I felt Ben deserved to indulge in any of his whims because I did not know how long he would have that luxury. And, we knew that time was not on his side. Taking him to Walt Disney World for one last visit was a very joyful indulgence. There were also the gut wrenching realities. I remember that after Ben repeatedly said that he wanted to go home from the hospital, I just wanted to honor his wishes and I asked his doctor if it would be possible to bring him home. His doctor, who proved to be my Bagheera, provided the wisdom and the reasoning, and then I had to have those heartbreaking conversations with Ben. There were stressful times when, just like Baloo and Mowgli, we argued and sulked. But, the caring in caregiving never went away and neither did the love.

I suppose that ALS was our Shere Khan. The wolves who raised Mowgli from the time Bagheera found him knew that they could not stand up to Shere Khan. They did not stop loving Mowgli, but they knew that he could not continue to live with them or Shere Khan likely would have killed all of them. Caregiving also comes with these difficult decisions. Sometimes it’s a matter of caregiving becoming so difficult that it poses physical and emotional risks to a caregiver. In Ben’s case, had he not chosen to go to the hospital’s hospice unit and separate from the vent, he would have had to go to a facility because he could not have lived in our apartment with a tracheostomy and needing 24/7 nursing care. This was not an option we liked but it was one we had to accept.

I could also relate to the battle in which Shere Khan seriously wounds Baloo- the fight to protect and care for Ben did take a toll on me in many ways that have still left scars, but love and devotion kept me at his side and I have no regrets about that. Just like Shere Khan, ALS was a deadly force, but, unfortunately, in our true story, it was one that we could not outwit or defeat.

I don’t know that I would run to Baloo for help in a crisis, though he might be great comic relief! Still, Baloo was protective of Mowgli and he has a good message. As caregivers, we don’t often get to “forget about your worries and your strife” and life seems much more complicated than “the bare necessities.” However, it is so important to take the time to cherish and remember the simple and wonderful aspects of our relationships and life prior to caregiving. These are the things that let you remember who you were before you were in a caregiving relationship.

As for me, I think I was a combination of Bagheera and Baloo- a dedicated, thoughtful caregiver, acquiring skills and perspective during on the job training, with a sense of humor and incredible klutziness. Importantly, Ben always felt safe and secure with me. Some caregivers choose the role and others are thrust into it. In any situation, it’s important to know ourselves and to honestly assess the dynamics of our relationships and the shifts over time. Are you more Bagheera or Baloo? How do you define a good caregiver? Are there other characters in your story in supporting roles? These are all part of “the bare necessities of life” in caregiving.

 

An “Oh, Bother” Kind of Day

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Grief,Disney,Winnie the Pooh

The Many Adventures of Winnie The Pooh
Walt Disney Productions

“Oh, Bother!”

No matter how well I think I’m doing and how much of a new normal I feel I’ve come to know, I cannot avoid those Winnie the Pooh “Oh, bother!” moments or days.  I read so many comments from people expressing anxiety and/or confusion about how they are handling grief or the many conflicting emotions involved in caregiving. I relate to that self-judgment but I have also come to realize that it is just a part of the grief with which I have come to co-exist.

August 26 was five years since Ben left this world. Five years seemed a milestone period of time to me and the date weighed on me. As always, days come and go, sadness ebbs and flows. The fact that the anniversary also is so close to the beginning of the school year adds anxiety to this time. I know and understand all those emotions, so I just accept the imbalance in my feelings and moods. As I’ve written, the pandemic and quarantine have also brought memories and thoughts of how worried I would be if Ben were here and I had to worry about bringing COVID19 to him, or what we would do if I became ill. Caregiving may no longer be my responsibility, but those thoughts never seem to go away. On the plus side, I think it’s a good thing that I am very sensitive to the concerns of others.

I have received many signs and messages from Ben over the years and I know that he is with me. Although I often feel his presence, lately, I have been more aware of his absence, and it bothers me. I’ve looked for signs that are not there. I am terrified of birds, but have had cardinals show up literally in my path staring at me. I’ve read that they carry spiritual messages, so although Ben knew how terrified I am of birds, I can’t help but believe that they were messages from me.

Fall was always Ben’s and my favorite time of year. We loved Halloween. For a while, it was too difficult to face Halloween without Ben, but I’ve slowly embraced it. In fact, last year at this time I was in Walt Disney World enjoying Mickey’s Not So Scary Halloween Party with my friend and her daughters and although it was bittersweet and there were tears, I enjoyed it and also enjoyed watching it through Ben’s eyes. At home, we always decorated, but for a while the decorations were too hard to have around. I would go to storage, look in the box, see if anything felt okay and take those things. I was surprised that the Disney Halloween countdown calendar actually proved a comfort to me but most things still remain in storage. Last year, I bought a few new things that remind me of Ben but also allow Halloween to look a little different. Yesterday, I went to storage and again looked at our Halloween collection. Again, I left most things except for those that I know that I have enjoyed displaying. At the last minute, I decided to take the banner that hung in our Walt Disney World hotel room during our last visit in 2014, when I had the room decorated for Halloween as a surprise for Ben- a very big surprise, particularly since it was July! I had tried to display the banner once before and found it upsetting, but something told me to try again. I do push myself, but also don’t judge myself about these kinds of things. As it turned out, I put up the banner and it bothered me. Over the course of the evening it really started to unnerve and upset me. I took it down, apologized aloud to Ben, and put it away. I will never know why things affect me so differently. They just do. I felt better without the banner, so I know it was right to put it away. Maybe I’ll try again next year. Maybe not. Although it’s emotional, I still feel compelled to decorate and it still gives me a feeling of connection to Ben. The good memories still make me smile despite the sadness.

This banner greeted us when we arrived at our room at Walt Disney World’s Boardwalk Inn. I just can’t enjoy it now.

It’s here- Happy Halloween! This is a Halloween countdown figurine I surprised Ben with that he loved. I thought it would make me sad but it gives me tremendous joy and comfort.

This morning, I took a long walk through Central Park. I have been able to take more walks through Central Park now that the weather has cooled a bit. With my Halloween sadness looming, I found myself tearing up as I walked around, missing being with Ben and together enjoying the arrival of fall. I know he would have enjoyed feeding the squirrels with me. I tossed money into each musician’s case or bucket because Ben always did- he loved music and had much respect for musicians. I stopped at the Hans Christian Andersen statue and thought about how we originally developed a connection because we loved the film Hans Christian Andersen as kids and he surprised me with the DVD when we had just begun dating. I started today’s walk feeling glad to be getting back in shape on walks that I enjoy so much and returned home in a mood of melancholy.

Hans Christian Andersen statue in Central Park

The squirrels love peanuts!

A lovely view of Central Park

I understand it. I can reason it. Still, as I walked home, I couldn’t help but feel exhausted at not being able to prepare for these unexpected triggers. I have learned to expect the unexpected, but it does not mean it doesn’t upset me. In a way, I think that these moments cause me to be aware of how I balance my emotions. Since I do think a lot about honoring Ben in all that I do, these setbacks during which I acknowledge how much I miss him and give me a time to spiritually and quietly send that message to him. I wanted to write down these thoughts for those readers who feel the frustration of how and if one really emerges from grief. I know that I have steadily gotten better. I believe that it’s normal and actually, okay, that I have those kinds of Eeyore-ish days, since I know that indeed, I have carved out a life for myself, even though I am sure of exactly where I want to be. As much as I remind myself of this new normal status, still, the bottom line on days like yesterday and today is “Oh, bother!”

The last time that Ben and I were around Central Park in the fall of 2013.

Merida’s Lessons About Being Brave Enough To Emerge From Grief And Explore My Destiny

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Brave, Walt Disney Pictures, Pixar Animation Studios 2012

This is always a strange time of year. I feel like I spend the summer with the anniversary of Ben’s passing looming over me, wondering how it will affect me, what I should do and where I should be in grief and in life. Once August 26 passes, in a way, I breathe a sigh of relief. On the other hand, it leaves me feeling in limbo. Now what?  There is more anxious anticipation as I await the start of a new school year. This year, the entire summer was off kilter due to the pandemic. I often had to check my phone to see the date. Time flew at the same time that it stood still. But, summer has come to an end. The school year will begin but in many ways it remains undetermined. I feel very disrespected as a teacher. It’s a lousy way to feel. I know it well, from the caregiving days of showing up and doing my best despite a lack of appreciation.

Maybe because it’s been five years and that feels like a big chunk of time, I’ve been feeling that it’s time to move forward on the ideas and dreams that have been percolating in my mind. It took a year from the time Ben left this world, but despite a lack of confidence, I started my blog, Pixie Dust For Caregivers, which has been a wonderful, rewarding experience. I earned my certification as a Caregiving Consultant, which bolsters my ability to support other caregivers, as does my volunteer work. I have wanted to do more, particularly with young people. Walt Disney says, “Think. Believe. Dream. Dare.” Believing in myself and daring are not things that come easy to me. Last week, I started to make strides that make me feel that I am finally becoming brave enough to realize my goals, dreams, and destiny.

Last fall, I talked to my wonderful principal about the possibility of reaching out to students who are caregivers- either for a parent/relative or even for siblings. I noticed that there were many amongst my classes- they could be frazzled, distracted, exhausted or emotional. Knowing how hard it was for me, an adult, to juggle caregiving with a full-time job, my heart went out to teenagers trying to process and carry out all of those responsibilities. My principal was very supportive of the idea and he suggested starting a club and talking to guidance counselors who could let students know about it, leaving it to the students to reach out to me rather than compromising their privacy. I positioned the club for the school as a club for caregivers but also for students who felt that they wanted and/or needed to take some time to care for themselves and others. As a group, we talked about volunteer activities.  Shortly after the club got underway, the wildfires in Australia began and many students talked to me about the animals because they knew how much I love animals. The club’s first activity was a fundraiser for the animals in Australia, and they were very proud of their success. The kids are remarkably talented and had so much energy, creating social media posts, baking, and generating enthusiasm.

Once the pandemic hit, the idea of volunteer activities was more challenging, but we continued weekly remote meetings. The students wanted to create school-wide remote workshops and they had great concepts. I helped them with their ideas and their pacing, had them handle our club’s Instagram account, and provided any oversight necessary. It was fun and inspiring just to listen to them chat during our meetings- cheering, supporting and advising each other. Their friends and even some teachers joined us for our workshops, which was a great sense of community at a time when we felt isolated. For a while, I focused on my frustration that the club was not accomplishing my original goal of reaching caregivers. However, as I thought more about it, I realized that I was nurturing a caring community. I was working with a group of young people to explore the idea of showing compassion, even remotely. These were students who, like me, are care givers. This is another path of my journey. I just had to step back, reflect and see it.

I pursued potential volunteer activities and at a virtual meeting met a woman who coordinates volunteer activities for a local organization that provides services to youth removed from their homes and facing some very tough life circumstances. I reached out to her about the possibility of having my students volunteer as a group, explaining that we had done a student-led journaling workshop that I felt could work well with her population. Although the organization had not worked with teen volunteers before, after a Zoom meeting with the program managers, there was a feeling that their population might actually really appreciate interacting with kids around their age. They put a lot of trust in me to carry this out, and I have a lot of faith in my students, so I knew that with support, they would do an outstanding job.

It took a few months of coordination among four centers where the youth are living, but we did our workshop last week. I was so nervous, doubting myself and just hoping that it would go smoothly and be well received. In fact, it was an extraordinary experience. The youth were all engaged, spirited and eager to participate. My student leader was sensitive, articulate and thoughtful, and the club members who participated were animated and happy to interact and support the effort. It was truly heartwarming. My students said they felt very special that the teens were so open and honest. They loved that the youth were holding up their work to the camera so we could see what they created in response to the prompts, which included what is your favorite word, what makes you happy, what is a source of stress. The feedback I received from the organization was overwhelmingly positive. They saw in the reactions and responses of their young people that this was a much needed and valuable endeavor. The teens completely embraced the opportunity to express themselves and share their feelings with my students. Journaling could prove to be a tremendous inspiration and pathway for self-expression that will help all of these young people in life. The organization’s staff was very impressed with my students, which makes me very proud of and happy for them. The teens can’t wait for us to return! I was so pleased to share all of the positive feedback with “my kids” as I call them. A remote session and working with teen volunteers were completely unchartered territory for the organization, and the activity as a volunteer effort was new for all of us, but we achieved something quite wonderful! I can honestly say I followed Walt’s formula: Thought. Believed. Dreamed. Dared. And it went well beyond expectations.

No one knows how this school year will work, but I’m hopeful that the club will continue our partnership with this local community organization and, perhaps, even create new partnerships and expand our club. More important, we are expanding our group of giving, compassionate, givers of care and support. I may not have envisioned the club in this way, but when I opened my mind and perspective, I could see that I have, in fact, made a dream come true and successfully moved towards fulfilling what I’ve come to believe is my destiny.

The other dream I’ve had is to somehow build upon my blog. I’ve thought about ways to shape it into a book and/or develop related products and activities. I have put a lot of obstacles in my way, starting with a lack of confidence. However, the ideas just hadn’t quite gelled in my mind. Finally, I have had some breakthroughs and begun to write and explore aspects of my blog that can become a meaningful resource.

It’s a big challenge for me to be brave enough to acknowledge what’s inside of me in terms of my capabilities and potential. I will have to work hard to feel and maintain the self-confidence to continue to believe and dare to make my dreams come true. Throughout grief, I’ve taken a lot of time to reflect, largely sharing those reflections in the blog. I don’t think anyone ever really figures out life because there are always twists and turns. For me, that process of reflection has allowed me to explore who I was, who I am and who I want and am meant to be. I think Merida was right when she said, ““Our fate lives within us. You only have to be brave enough to see it.” I feel that I’ve made progress in my journey by virtue of being at a point where I’ve begun to take some leaps of faith. Of course, a little Bibbidi Bobbidi Boo wouldn’t hurt!

Five Years- Was Fairy Godmother Right About Pain and Memory?

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My dear Ben,

Today is five years. Five years. It’s been a difficult day, as it always is. I went to sleep reliving our last night together. I woke up reliving that last day. I’m still grateful that you left this earth surrounded by love and music. It still hurts to my core. I have repeatedly watched this video, which I made on the anniversary of my first year without you. I hope you feel the love. I believe you do.

Five years. Should those memories still be so debilitating? It seems like a milestone increment of time that should come with some kind of revelation. Should. I hate those “shoulds.” I think about the quote from Disney’s 2015 live action Cinderella: “Time passed and pain turned to memory.” Does it? “Should” it? For me, the pain is still here. It is not just a memory. Yes, it has shifted and it isn’t as acute on a daily basis. Triggers like this date are huge setbacks. I think that the quarantine period due to the pandemic has brought back so many of the caregiving memories. Although removed from those responsibilities and worries, with every excursion outdoors I have found myself dwelling on how it would have been if you were here and there was a constant threat of COVID on top of ALS.

Five years. I don’t know where I expected to be. I try not to concern myself about what others think about it. There are times when I feel like I’ve come far and times whenI feel that I am too consumed with our experiences and still in a relationship that I must face can now only exist in the form of a spiritual connection. I recently printed out all of my blog posts from the past four years. I spent the past several days reading them- 695 pages of thoughts, memories, regrets, concerns, wishes, successes, failures, steps forward and steps back. I can see that over the past five years I have ventured more purposefully into life. I have done a lot of reflecting. I have carved out a nice life for myself. I have also given myself permission to feel however I’m feeling. I find it satisfying to find ways to support other caregivers. I am proud that I have contributed to fostering a caring community within my school and I still intend to reach more caregiver kids. I have good friends- old and new- and I do things that I love. I even wore a wet suit to get in the water with beluga whales. Yes, I actually bought and wore a bathing suit. Early in my writing I expressed a reluctance, but also a sadness, that I did not know if I could ever enjoy Walt Disney World without you. Last year, I was able to return with Monica, Andi and Snappy (Abby 2.0) and we honored you while we also created new memories. It was heartwarming and empowering. So, there has been growth. Is it enough?

I feel a sense of bittersweet pride when I take delight in the new memories. I flounder when I think about the future, especially when I consider that I am alone. Yet, I know it’s time. I even bought a new set of picture frames to capture the new memories and give them a special place beside ours. When I say it’s time, it’s not because of the five year marker. If it had happened after two years, that would have been fine. If it didn’t happen for another five years, that would have been fine, too. Walt Disney said, “First, think. Second, dream. Third, believe. And finally, dare.” Thinking and dreaming are easy for me.When I say it’s time, it’s because I’m feeling prepared to try to believe in myself enough to dare to find my way. I think that’s a good thing, even with the pain.

I am not sure where I want to go from here, which is one of the reasons that I printed out my blog. Merida says we need to look inside ourselves to see our destiny, and caregiving and grief resonate so clearly within me. I think that this five year mark is a good time to look at this period of time and my evolving perspective. It gives me great comfort to know that you remain so vibrant in my treasure trove of memories. I feel that those memories propel me to further explore and discover my destiny. The pain is not just a memory. It is a palpable reminder of how much love there was and how much those experiences are shaping my life in positive ways. You will, of course, join me in this exploration. Please help me to confidently travel the new paths in work, life and love.

Five years. I continue to miss you every day. I’m getting more accustomed to finding ways to keep you with me as I continue my own journey. I do often feel alone. Sometimes, I think I keep you close to avoid those feelings. Thank you for sending me signs that you’re with me. I know there are people who don’t believe in that, but we always did. Thank you for letting me feel supported when I step out on my own. I will always feel a sense of anger that you were cheated of so much life and we were cheated of so much time together. I hope that you can feel that I often look at life through your eyes to experience things for both of us. I feel the pain of your absence, but I do strongly feel your presence, too. You are still so deep in my heart, woven into the fabric of who I am. Our relationship is not baggage, but rather experience that offers the important reminder that love isn’t always easy but it is, as they say in Bambi, a song that never ends.

I spent a lot of today looking at our videos and photos. There were a lot of tears but also many smiles. I have told Tinker Bell about you. Interestingly, she spent a lot of time on your Monsters, Inc blanket. She’s been very attentive, too. Maybe you had a little visit with her. Each night, we look at your picture which is my screensaver, and we say goodnight to you.

I do take every opportunity to honor you, my Ben. I hope you feel that. I hope that you are enjoying what I believe is your constant presence at Walt Disney World as the grim grinning ghost you wished to be, and that you are, as you always dreamed during your battle with ALS, walking, running, talking, singing, eating and playing music.

I love you,

Abby

February 2020 Calendar Page

 

In Grief, Do We Move Onward?

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Copyright © Disney Pixar 2020

I do not like the expression “moving on” with regard to my grief. To me, it implies leaving something behind. I have not left Ben behind. I am particularly sensitive to that as the five year anniversary of his “leaving” approaches.

I was not sure what to expect from Disney’s film, Onward. As it turned out, I thought it was an ambitious and sweet effort to approach the death of a parent, and death, in general. The story has good messaging that could be helpful to children. It was even validating to me. But, I still don’t like the title.

Onward tells the story of two elf brothers, Ian and Barley. They have lost their dad, but it appears that he died before Ian was born. The mom reminds them of how loved they were, pleased to see Ian wearing his dad’s sweatshirt. Ian so much wants to know about his dad. For his birthday, he has a list of things that will define him as the “new me,” and that list includes being like his dad, but he really doesn’t know what his dad was like. Barley has few memories of his dad that he does not seem to want to talk much about, and he finally admits that he felt bad that when his dad was in the hospital and had lots of tubes in him, Barley was too afraid to see him. Having lost that last chance to see his dad, from that point on, he vowed never to be afraid again.

Ian wants memories. He plays a tape recording of his dad talking, conversing with his dad as if it is an actual conversation and finding such comfort in hearing his dad’s voice. It’s a heartbreaking reminder that we can never bring back these experiences. I can relate to that feeling of trying to watch videos and put myself back in time to those moments. I am lucky that I have a lot of memories. I’m grateful that I was there for Ben during the bad ones. As a teacher, I have met many students who have lost a parent and do not have memories. Films like this show them that they are not alone. And, they tackle the material that can be hard for remaining parents to discuss, opening doors for discussion. For Day of the Dead, I show Coco in my Spanish classes, and I have had more than one student ask to watch it alone or with me during their lunch period, because it helped them to process their losses and they liked to talk with me about the comfort of feeling that their loved ones were still there for them on some level.

In Onward, the boys’ mom is the support and encouragement that the boys need. She recites a mantra that there’s a warrior inside as a reminder to herself. This is a mantra that could help anyone throughout their experiences in caregiving and in grief. She not only needs to help her sons in dangerous situations, but also in their grief. On Ian’s sixteenth birthday, their mom gives them a gift per their father’s wishes. Even mom makes a discovery about her late husband. He was a wizard! He leaves the boys with a special wizard’s staff and a spell that would bring him back for a day to see how they have grown up. Imagine such a spell! What I wouldn’t give for a day with Ben.  As it turns out, the spell gets messed up and they only bring back their dad’s legs and feet. They are determined to fix the spell to be able to spend the time with him. This leads to a series of mishaps. Oddly, after traversing the land in search of the missing gem to fix the spell, they end up exactly where they started. Such is grief. We go through all sorts of motions to make sense of loss and to allow ourselves to feel the person is still with us. In the end, we cannot recreate the person or the experiences. We find ourselves back at the pain of loss. However, the journey allows us to explore our memories, our emotions, and even to gain better understandings of others and ourselves.

During their adventures to bring back their dad, Ian sees that it’s Barley who has a lot to say to their dad. Barley misses the man he knew. Ian misses having and knowing his dad and realizes that Barley has been that father figure for him. All of the things Ian lamented not doing with his dad- laughing, learning to drive, taking walks- he actually did with Barley. Ian knows that Barley is the one who deeply needs to have those moments with their dad. He lets Barley have that last hug. I still wish for that hug. It’s gut-wrenching to acknowledge that this cannot really happen (unless I come across a wizard’s staff). If I thought I could, like both boys, I would fight for an opportunity to reunite with Ben to ask him questions and to hug him. Just like the boys, I would want to know that he is happy for and proud of me.

I often write about the signs I see that Ben is with me and how they console and inspire me. I also take comfort in revisiting our memories, especially through photos and videos. As I’ve been organizing my apartment this summer, my breath has been taken away as I’ve rediscovered cards, gifts, ticket stubs and other mementos of our time together. Navigating grief does sometimes feel like a quest, but I don’t see it as one in which I forge “onward” and triumphantly defeat grief. Instead, carrying in my heart deep love and memories, as well as the belief that Ben is with me, I humbly step forward in life.

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