grief

Do The Emotions of Grief Turn You Inside Out?

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.

On Wishes and Knowing What’s Really Important

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.

Pirates, Walt Disney World,ALS

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.

CHORUS:
Wishes…
Dream a dream.
Wishes…
Set it free.
Wishes?
Trust your heart.
Just believe.

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.

JIMINY CRICKET
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.

BLUE FAIRY
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.

ALS,Caregiving,Grief,Walt Disney World, Disney

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.

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

Two Years

Today marks two years since Ben left this world. I don’t know if it feels like a longer or shorter time. I guess both, depending on what moment I’m in. I’ve spent the past few days thinking about what to write and how I’m feeling. These are hard days filled with tears that flow easily. In my mind, it’s perfectly okay to have a few sad days. In a way, the tears are reminders that I was fortunate enough to have had a beautiful love that I miss so profoundly. But, it’s sad nonetheless.

A year ago, I posted this video, and I am posting it again because I love these memories of Ben and I love people to remember him alive and vibrant. He loved those photos, too. And, “In My Life” was his favorite Beatles song. It was played for him by a lovely guitarist named Todd on the day he left.

I know for sure that Ben has not left me. As Mrs. Frankenstein says, he has moved into a special place in my heart. I often feel him with me. I still talk to him. That does not make sense to everyone and that’s okay. It seems to me that the best thing that I can do is try to honor him in my actions. Sometimes I buy things, listen to music or watch movies because they let me get lost in thoughts of him, and in those moments I see him smiling. Sometimes this gives me comfort and at other times it is a painful reminder that he is not here. Sometimes I do need a good cry.

In facing this second anniversary, I took time to reflect on the past year and where I am compared to last year. Firsts are hard, and in that first year without him, every first occasion hurt in a very raw way. I labored through that first year, often just going through motions. Although I slowly ventured out and saw friends and participated in activities, I often returned home in tears because it took so much energy to act cheerful, and if I was at all enjoying myself, I felt guilty and overwhelmed, or almost confused by, the conflicting emotions. Blogging helped me find purpose and revisiting the Disney films I love so much helped me to focus, as I looked for messages and guidance and opportunities to gain insight into my experiences.

The fact was that although my dad died a year and a half before Ben, since I was so busy as Ben’s caregiver, I did not have the time to really grieve that loss. When I lost Ben and I no longer had caregiving responsibilities, I was able to truly grieve, but it was for the loss of both of them. It was also the loss of what had become my definition of myself as a caregiver.

In this second year, I still profoundly felt Ben’s absence, and yet, I have found that he is always present. I had to establish a new normal. I would say that this year was spent integrating my caregiving experiences and grief with rediscovering myself and redefining my life. I have made changes, particularly to my apartment, and I’ve documented those in this blog. The changes have not come easy, but Ben has been a part of the choices I’ve made. And, there are some things that I cannot let go, which was why I got so upset when his computer crashed and insisted on restoring his music library on his desktop computer with his speaker, and why I have continued to use his desk chair/wheelchair although it is not in great shape and I have new and beautiful Mickey Mouse chairs that he would love.

I admit that I dreaded this day and have been very emotional even thinking about this blog post. In general, although I have not forgotten the scary and devastating times, I prefer to summon the fun and loving ones. Unfortunately, summer, and these few days in particular, are spent reliving Ben’s last days, with hospital and hospice memories. There was a lot of love, but there was ultimately loss. I can’t seem to stop replaying the scenes in my mind. I’m trying to embrace the sadness as part of the process of grieving and as a quiet time to think about Ben and about us, and how much I miss him. I give myself permission to be emotional.

Last week, I did have a wonderful distraction, traveling to Chicago and visiting my dear college friend, Monica, whom I hadn’t seen in many years. She named one of her daughters Abby and I’d never met my adorable namesake, her adorable sister, Andi, or even her husband, Mike. Caregiving certainly kept me from going anywhere, but I’d lost touch with so many people I cared about. Catching up with Monica and meeting her family was a most special time and the happiest I’ve been in a long time. Spending time with good friends, being with kids, laughing and exploring are fun and treasured moments for me. Monica wanted to know about Ben, and it felt good and important to talk about him and our relationship in the good times and the bad times. Ben knew how important my friends were to me, and he would have loved Monica’s family and seeing me with them. He also would have enjoyed Chicago, and although it was sad that he was not actually there, I delighted in the Shedd Aquarium and the architecture, and especially The Bean, through his eyes. Yes, it brought some tears, but it also brought comfort. I can keep living and honor and carry Ben with me all the time.

The Bean sculpture in Millennium Park. It was probably the most sentimental place we visited, since Ben’s nickname was Mr. Bean.

Abby 2.0, my namesake, Monica and I taking our picture off of the reflection from The Bean!

Watching the historic solar eclipse with Andi and Monica. Ben, the science and documentary lover, would have relished this moment.

I learned a lot about myself over the past year. In Walt Disney Pictures’ Alice in Wonderland, Alice said, “I can’t go back to yesterday, because I was a different person then.” Caregiving and watching Ben battle ALS changed me. I felt and expressed love and compassion in such deep and immeasurable ways. I came to recognize a strength and bravery in myself that I still have trouble acknowledging, but I do know they are there. I found myself in caregiving and I want to support other caregivers whenever possible. I’m redefining my life with things that make me feel happy, satisfied and useful. I am not quite there, and I have my setbacks, but I am on my way, and I know that Ben is with me on my journey.

I don’t know what the next year will bring. I do know that I will take Ben with me in that special place in my heart.

I’m thinking of you today, my dear and silly Ben, as I do every day, free from the constraints of ALS and walking, talking, eating and playing your music. I love you.

Walt Disney World, Halloween

Ben and I at Walt Disney World, Halloween 2011. Good memories are always a comfort.

Bambi’s Story Rings True After 75 Years!

From Bambi. (1942)
Music by Frank Churchill
Lyrics by Larry Morey
Photo: Walt Disney Pictures

Today marks the 75th anniversary of the release of Walt Disney Pictures Bambi. It is a special film to me, and has become even more special during my experiences in caregiving and grief.

One of my very first posts was a reflection on the lyrics to “Love Is a Song That Never Ends.” Click here for that post. I frequently refer to that song. Here is the song clip to accompany the lyrics:

Love is a Song that Never Ends
Music by Frank Churchill
Lyrics by Larry Morey

Love is a song that never ends
Life may be swift and fleeting
Hope may die yet love’s beautiful music
Comes each day like the dawn.

Love is a song that never ends
One simple theme repeating
Like the voice of a heavenly choir
Love’s sweet music flows on.

Love guided us through even in the darkest and most trying times. The truth was that as much as we loved each other, when there was stress, we did not always show each other our best sides. We were scared, devastated and angry at what life threw at us. We were human. Now, nearly two years after Ben has left this world, I continue to sort through emotions, but the profound memories that I have – of the more carefree and healthy days as well as the most challenging caregiving and grief-filled days- constantly remind me that “love’s sweet music flows on.”

I wrote another post about the wonderful relationship between Bambi and Thumper.  The following most delightful scene took on a new meaning for me.

What I wrote in that post bears repeating:

Thumper was the very adorable and lovable young forest gossip, and he certainly didn’t always say the right thing. He was the one to point out that Bambi was “kinda wobbly, isn’t he?” and “he doesn’t walk very good, does he?” This is not exactly the positive reinforcement someone wants when struggling and self-conscious! And while his mother had to remind him that “if you can’t say something nice, don’t say nothin’ at all,” Thumper was a child making an observation, albeit tactlessly, but his heart was in the right place. He was quite devoted to his new friend, the young prince Bambi.

Thumper and his siblings (also incredibly adorable little bunnies) play with Bambi but also watch out for him. They anticipate where he is going to struggle and they gather around to help him so they can play together. Thumper was Bambi’s motivation. I especially love this clip, in which Thumper assesses the situation on the ice and tries to position Bambi’s legs, advising Bambi to “walk both ends at the same time.” It doesn’t go so well and they both end up skidding and falling. It reminded me of the way I had to work with Ben to help him up and figure out the best way to get around. We each had to trust each other and there were times we were nervous and other times it was fun. There were times that I managed to keep him from falling and got him safely onto the bed or a chair. There were also the times that we both ended up on the ground, fortunately unharmed. And, like Thumper, we often found ourselves saying, “Gee whiz, what happened that time?” I always loved this scene in the film, but now I see it in a new light.

Thumper never gave up on Bambi or their friendship in the same way that as caregivers, we never give up on our loved ones. And, Thumper was so happy when Bambi did have an accomplishment like walking steadily. Though Bambi is first learning to navigate the world and Ben was adapting to new ways to do some tasks and dealing with losing the ability to do others, I could relate to Thumper’s positive attitude of problem solving and encouragement.

Also touching was that he never left Bambi behind in pursuit of his own fun. ALS is known to be an isolating disease, particularly because you lose the ability to communicate. Thumper was determined to have Bambi join him with their other forest friends. It is an important lesson for all caregivers, friends, relatives and others to find some way to remain engaged with our loved ones. Visits, cards, texts, emails, photos, videos and a simple presence can all help a person feel remembered and included in life. Ben and my dad always enjoyed hearing that people thought of them.

Bambi was so frightened, confused and sad to lose his mom. He did not know what the future and the world held in store. But, time went on and winter turned to spring, and Bambi grew up. He reunited with Thumper and Flower and the rest of his friends and all their families, and none of them forgot the friendship they shared. Thumper and Bambi- and a dose of Disney- remind us that love never dies and beautiful memories stay strong and sustain us as we move through life’s good and bad times.

(f you haven’t seen the film, or haven’t watched it in a while, treat yourself. It is a beautiful story.)

Happy Anniversary, Bambi. And, thank you!