Mulan

Mulan’s Anniversary: Reflections of Caregiving, Grief And Who I Am Inside

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 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?

grief,ALS,Disney,Christmas

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.

 

On Mulan and Reflecting What’s Inside

 

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.

Reflection:
Music by Matthew Wilder
Lyrics by David Zippel
Performed by Lea Salonga

Mulan (1998)  Walt Disney Feature Animation