On Mulan’s Anniversary- Reflections on Caregiving and Who I Am Inside

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized 0 Comments

Reflection
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 22 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. I learned that at my core I am an attentive and devoted caregiver, whether to my dad, Ben or my students. 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 still 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 feel self-conscious when I mention Ben and someone asks how long he’s been gone. I sometimes become apologetic that I realize he’s been gone almost five years. I keep reminding myself that Ben is still a part of everything that I do and we will always be connected. I know that 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 see my caregiving qualities as positive parts of myself.  It is a rare  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, and even managed to extend it into my school life. This year, I started a club that I intended to reach kids who were caregivers. I saw that many kids were struggling because they were caring for an ill parent or relative or caring for siblings. They had no time for themselves and had difficulty focusing on schoolwork. I asked guidance counselors to let kids know about my club and leave it to them to reach out to me, because I did not want anyone to feel that their privacy was invaded. As it turned out, I have a club of wonderfully caring kids who want to volunteer and want to create activities to care for our school community. It has been a great joy for me to see them blossom and build their confidence. They have created virtual workshops for the school community that have been quite delightful and valuable, and the workshops have provided a welcome opportunity for the students to connect at a time when they feel so isolated. It’s not exactly what I intended, but it’s been such a positive experience to know that indirectly, I am contributing to the students’ development of social and caring skills that would put them in a good position as caregivers. I’m not exactly sure where it’s going, or where I’m going, but I feel like I am doing what I was meant to do. This is a positive way to reflect my caregiving experience.

I will continue to explore ways to reach out to the caregiving community and to 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.

In the place where I took a photo with Ben, this time on my own, but strong!

Happy Anniversary to “The Incredibles 2”- Elevating The Superpowers of Caregivers

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized 0 Comments

In honor of Ben’s love of this film, here’s a pic of him with one of his best buddies during our visit to Walt Disney World in 2014.

Today is the second anniversary of the release of The Incredibles 2.  I reread my original post about the film, most of which is re-posted here. I like to reflect on where I was and where I am with regard to dealing with his death and my life. I can’t help but recall that when the sequel opened, it was particularly bittersweet to see it without Ben because The Incredibles was one of his favorite films, but it was also important to me to maintain our tradition and see it on opening day. I do recall that although there are times when I literally feel Ben beside me, which I know some people find strange, at this film I didn’t feel his presence. I did, therefore, profoundly feel his absence. I was angry that he did not have the chance to see this movie. I don’t usually feel angry, though I do often feel frustrated that he was cheated of so much of life. I felt that deeply when I returned to Walt Disney World last fall, when I experienced the activities and events that we loved so much and will never be quite the same without him. There are certainly more significant life moments than a film that Ben has missed and will miss that I should probably be more angry about, but sometimes the little moments make a tremendous impact.

This blog is a clear reflection of the way I look to each Disney film for enlightenment, hopefully a quote that will carry me forward or give me perspective. I like to be able to share these thoughts with other caregivers with the intention that they will validate, inspire or comfort. The Incredibles 2 did not disappoint. The film actually has a lot of messages about inclusion, diversity, fighting for justice, family and love.The wisdom seems even more powerful in the midst of the many issues that we are facing as a society. Though it may be a generalization, I have to agree with Agent Dicker when he said, “Politicians don’t understand people who do good things. That makes them nervous.“

Interestingly, the quote that resonated with me was very appropriate for caregivers, and for an opening weekend that included Father’s Day. Edna Moda told Mr. Incredible, “Done properly, parenting is a heroic act. Done properly.”  I was so fortunate to have had two devoted and loving parents. As a public school teacher, over the years I have seen many children who are not parented properly, in fact, they are barely parented at all.  Good parenting is indeed a heroic, selfless act of love. The same came be said for good caregiving. It is, indeed, a super power, though I never thought so when I was a caregiver.

As a caregiver, I often questioned my abilities, especially when I was struggling with exhaustion, sadness and patience with Ben when he was stubborn and demanding. But, like any other caregiver, I put my emotions and feelings aside, or, at least on hold, and trudged on because the immediate needs of caregiving are not negotiable. Phone calls abruptly ended, activities were thrown to the side, chores ignored (well, I can’t say I minded that very much) as I attempted to create order amidst chaos, calm when he was panicked, and peace amidst the devastation of watching Ben deteriorate and suffer, physically and/or emotionally. Like all caregivers, I also ran interference among medical professionals and other related staff, as well as family and friends. I provided spirit boosts and levity and also administered difficult doses of reality, as tactfully as possible.

It certainly wasn’t my goal as a caregiver to be heroic and I don’t think that caregivers generally perceive themselves as heroes. We probably spend more time following Dory’s advice to “just keep swimming.” As a crybaby, I’ve never seen myself as heroic- at any point in my life- which is why, I think, I was puzzled when people told me that I was brave. Ben was brave, I was along for the ride, trying to be helpful and, a good deal of the time, not sure if I was much of a success. My insecurities made me feel much less than a superhero. However, I can attest that I definitely earned the Wonder Woman t-shirt Ben got me after I managed to grab him and keep him from falling off the bed!

In the film, we are introduced to new super hero, Voyd, who asks Mrs. Incredible/Elastigirl, “How do you balance the superhero stuff with the life stuff?” Indeed, that’s a very important consideration for caregivers. For me, I constantly struggled with balancing the responsibilities of caregiving against a full-time job, daily life chores, relationships with friends and family, the emotional strain of losing the life Ben and I had, and knowing that ultimately, I was going to lose Ben. In retrospect, I think the balancing act IS the superhero stuff.

Young Dash tells his dad, Mr. Incredible, that he wants to fight bad guys because “It defines me.” I can say that caregiving defined me for several years and I found that it is a significant part of who I am and how I see myself. I have written about how I floundered when I was no longer a caregiver, until I found myself again through blogging, volunteering and trying to support other caregivers. Although I would rather not have discovered this through the illness and loss of my dad and Ben, I feel like I have identified caregiving as my super power. Unfortunately, I was not able to defeat cancer or ALS, but my dad and Ben always felt cared and advocated for and loved, and that is incredibly powerful. I did not see it while I was actively caregiving, but time and distance have provided valuable perspective.

Mr. Incredible at Walt Disney World’s parade, 2014.

Mr. Incredible summed up well the life of a caregiver when he said: “How do I do it? By rolling with the punches, baby!” I can picture Ben smiling and nodding, because, in actuality, both he and I rolled with the punches. I am still in awe of how well he rolled with the severe punches dealt to him by ALS. Maybe, in our own ways, we were both super heroes, albeit without the cute costumes.

I highly recommend The Incredibles 2. It’s quite fun and fantastic and offers unexpected words of wisdom for caregivers and everyone else. Post your thoughts! I look forward to reading them.

Ben as Mr. Incredible- Part of a birthday collage that I made for Ben. When it came to battling ALS, Ben was indeed a super hero!