Caregivers Have Stories To Tell

The narrator says this in reference to Cinderella’s grief over the loss of her mother. Cinderella © Disney 2015

There are some Disney film quotes that linger in my mind. In the live action Cinderella, the narrator, who is Fairy Godmother, explained that after Cinderella’s mother passed away, “Time passed, and pain turned to memory.” I struggled with this for a long time because the pain was palpable and hardly fading into memory. In my mind, referring to it as a memory meant I had to dig a bit to conjure it. Now, it has been ten years since I lost my dad, and this summer will mark nine years without Ben. Although I still cannot say that pain turned to memory, I realize that I do not live in the pain any longer. Today, I realized that living at more of a distance from that pain makes harsh memories of those days extremely difficult. Setbacks throw off the balance I have achieved in my coexistence with grief and I’m back in the memories.

If you regularly read my blog, you know that theater is my favorite activity and my treasured escape. Today, I attended a play called Mary Jane, by Amy Herzog, and starring Rachel McAdams. It is the story of a single mother who is the caregiver for her baby son, Alex, who has Cerebral Palsy. We never meet Alex, who is on a ventilator, has seizures and seems to be nonverbal. The play revolves around Mary Jane’s conversations with various people, including nurses, doctors, strangers in the hospital, and a chaplain. It is a beautifully done play and it is very emotional. I knew it would be difficult for me to watch. But, I needed to see it and I wanted to support it. It was not an escape. It was a step back into my own experience. I made a point of going by myself so I could be alone with my thoughts, my tears, my recollections.

I could instantly relate to watching Mary Jane go from one challenge to the next, often with a smile, and always as an advocate. Hearing people tell her to take care of herself and watching her take it in and not even reply brought me back to my own reactions to advice I knew was heartfelt but that I also knew I was not going to follow. I had to force myself to focus on the play because my mind jumped to my own still vivid interactions. I was very fortunate to have a majority of wonderful people tending to my dad and Ben. Still, I learned to use my voice to ensure their good care, something that did not come naturally to me at the time.

Grief remains enigmatic to me. I never know exactly what will spur a setback. I knew that this show would bring tears. Indeed, it was a tragic story and I empathized on a deep level as Mary Jane dealt with her son’s episodes and emergencies. It was a scene with music therapist that hit me the hardest. Mary Jane is at a breaking point when a music therapist came by after the baby had a medical procedure, so he was sleeping. The music therapist explained that she wouldn’t be able to come back later that day and wouldn’t be at the hospital for another few days, when she couldn’t promise that she could return to see Alex. This was the one thing that Mary Jane simply couldn’t accept because she said that Alex was looking forward to this. In speaking with Mary Jane, the music therapist said that it was possible that Alex was conscious enough to hear the music, and she played a song. It soothed Mary Jane as much as we want to believe it soothed Alex.

Of all that happened in this play, this interaction, and the mention of music, affected me intensely. At one point, Ben had a crisis and he had to be intubated. It was terrifying, and in order to cope, as I stood outside the room, I tried to shift my focus to how fascinating it was that they converted his room into a kind of operating room, with people and equipment quickly moving in and out. Afterwards, I sat with him as he slept. When a nurse came in to check on him, she told me that although his eyes were closed and he wasn’t entirely awake, he could probably hear me. I remember being overwhelmed with a feeling of helplessness and I burst into tears. The nurse hugged me, and I asked if she thought he would hear music. I had brought his iPad to the hospital so he could listen to music. The nurse encouraged me to play the music, which I did. I remember asking Ben if he heard me and he nodded slightly. I asked him if he wanted to listen to the music and he nodded again. Music was always a driving force in Ben’s life, and it proved to be an important part of his hospital experience, too.  

When Ben was first admitted to the hospital, the palliative team asked about his interests and I told them music and computers. At the time that this crisis occurred, we had not received a visit from a music therapist. However, when he was transferred to the ICU after an emergency intubation, a music therapist visited the ICU- which was unusual- and cheered Ben with guitar music. He even played some Beatles music, which Ben loved. Ben enjoyed several visits from music therapists, and the guitarist even played for him at his bedside on the day he separated from the vent and left this world.

After the play, I walked home with my thoughts. I listened to my “Ben Playlist” of songs that were important to us, some of which were played on the day he died. I gave myself permission to feel the grief. I was grateful to be by myself. I did not want to hear any other opinions, or comfort, or suggestions of what I “should” do or think.

As stressful as it is to revisit those days, I always come back to that as awful as it was, there was so much love and caring. As Iago said in Aladdin: The Return of Jafar, You’ll be surprised the things you can live through.”  The pain of those days is now tempered with perspective. The pain may be a memory, but it is easily summoned and, on days like today, it lingers. I do not avoid the memories, or even the tears. That experience has impacted my life and taught me a lot about myself. Feeling the grief also lets me know that I have grown and moved forward. I’m grateful to be able to articulate my feelings here, and also grateful when I hear from people who relate and then want to share their own experiences. We have the experience of caregiving – and sometimes grief- in common, and it is okay to feel, internalize, and grieve differently.

ALS,Caregiving,Grief,Iago,Aladdin

I could not have seen this play when I was entrenched in caregiving. In fact, I avoided anything that was at all sad for a few years after I lost my dad and Ben. Now, I’m ready. I felt compelled to see this play to honor my experience but also to support art that puts the spotlight on caregivers and the caregiving experience.  Not long ago, I wrote about another play that I saw about caregiving, called Cost of Living, by Martyna Majok. (click here to read that post) This play also left a lasting impression on me. There are more than 53 million caregivers in the United States. They have stories that need to be told. I am so grateful for the artists who bring these issues to life.

Thank you for reading my stories. Caregivers, tell your stories. You matter.

Mother’s Day Through a Disney Lens- She Lives in Me

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We were always Mickey Mouse fans!

Today is Mother’s Day. My grandmother believed that every day should be Mother’s Day. The truth is that when my mom was alive, every day WAS Mother’s Day. We were so close that we did not need an actual holiday to celebrate that fact. Because of that, after I lost her, and then my grandma, I can’t say that this holiday was like other milestones in terms of evoking debilitating sadness. Still, especially without my dad, too, there is always a feeling of not belonging, the sting of realizing that I don’t have their close and unconditional love anymore and the knowledge that they have to live only in my memories. Living in a house with Grandma, in many ways I grew up with two mothers, and I honor both of them today.

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Grandma doing my hair. She crocheted my dress. She was very talented! I get my creative streak from her.

I think about the importance of mothers in Disney films. In many of the animated films, mothers are not present, having died at some point in the childhood of our favorite characters. I have been moved by more recent live action Disney films, where adults and children show emotions and vulnerability as they deal with loss and grief. The films show us that it is okay to be sad and help us to see that people we love and lose stay close in our hearts. This touches me deeply, and it is such an important message for children who are grieving. I previously shared this clip from the live action Cinderella, where Cinderella’s father advises her that they must always cherish their home because her mom was the heart of it, and they must honor her. Cinderella was my first favorite princess and she remains dear to my heart. I especially love that in the live action film from 2012, we meet Cinderella’s mother, who imparts the important advice, “have courage and be kind.” But we see how Cinderella and her father work through their grief and how Cinderella must then cope with the loss of her father. I keenly relate to how she acknowledges the ways in which she her parents with her and honors them in her actions. The way that she chooses her mother’s dress and asks her Fairy Godmother to keep the butterflies because of her mother validate my own gestures. They are also good ideas to share with children who are grieving.

In Mary Poppins Returns, Michael Banks (yes, all grown up and with his own children) must cope with the loss of his wife and help his children. He lets them know that their mother lives in their hearts and memories. He explains, Your mother’s not gone. She’s in your smile, and your walk, John, and Annabel’s eyes. She’ll always be with us wherever we go.” 

I love when people tell me that they see my mom and dad in me. To this day, I have a hard time when I see that restaurants and shops that I visited with my mom or Ben have closed. It feels like I have lost tangible evidence of our memories, taking them further and further away. I sometimes need to remind myself that I carry all of those memories and the relationships within them in my heart, and by sharing them, I pass them along.

 Mary Poppins sings a wonderful song, The Place Where Lost Things Go, in which she suggests:

Maybe all you’re missing lives inside of you
So when you need her touch and loving gaze
Gone but not forgotten is the perfect phrase
Smiling from a star that she makes glow
Trust she’s always there
Watching as you grow
Find her in the place where the lost things go.

(Composer: Marc Shaiman; Lyrics: Scott Wittman)

As time has passed, I think mostly of the wonderful memories of my mom and Grandma and our time together. I cherish my memories to keep my mom’s and grandma’s spirits alive and honor them. So much who I am and what I do reminds me of them. I get my Peter Pan-like inner child spirit and love of Disney from my mom. You won’t be surprised that one of my favorite memories is when my mom called me from Walt Disney World exclaiming, “Abby, I met Mickey!” My mom was the only truly selfless person I have ever known and I hope that in some small way I have followed her example. Every time I bake, I feel Grandma with me, and she is a part of all my creative and artistic endeavors, as well as my fashion choices. I believe natural caregiving skills, which even extend to my students, were instilled by both of them.

Now, I am a devoted mom to my cat, Tinker Bell, as I was to Disney and Tiffany. My mom- well, my whole family- loved our pets, so their influence was present even as I cared for Disney and Tiffany as they coped with several illnesses. Tinker Bell. Today, as on most days, she is curled up next to me, napping and then waking up to chat and, I imagine, say “Happy Mother’s Day!” while reminding me that I am lucky to be her Mommy. She’s right, of course!

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I do know that my mom and grandma are always with me. There is not a day that I don’t think of my them and I so frequently speak of them that sometimes people are surprised that they have been gone for more than 25 years. I am proud to honor them on Mother’s Day, though in truth, I celebrate, treasure and miss them always.

Happy Mother’s Day to mothers of humans and all creatures, great and small. If you’re missing your mother and/or mother figures on this day, I hope that you will take some time to heed the advice of Mufasa and try to feel their presence and the ways that they may live through you.

Thumper- A Special Bunny Who Knew About Caregiving and Friendship

Bambi (1942)
Copyright©Walt Disney Productions

Easter seems a perfect time to honor my very favorite bunny, Thumper, from Walt Disney Pictures Bambi.  I’ve always loved Bambi, and when I first started this blog, I wrote about the song Love is a Song that Never Ends and how it resonated with me in caregiving and in grief. My experience as a caregiver led me to see Thumper’s relationship with Bambi in a whole new way.

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 just a child making an observation, albeit tactlessly, but his heart was in the right place. Actually, 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. As their caregiver, it lifted own spirits when my friends reached out to them, too.

The film also deals with Bambi’s fear, confusion and sadness when he loses 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 ever 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.

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

To everyone who celebrates it, Tinker Bell and I wish you a Happy, Peaceful and Healthy Easter!

Grandma- Always With Me

Today, the anniversary of the passing of my Grandma, Dora, rounds out the awful month that February is for me. If you follow my blog, you know that my dad’s birthday was February 15 and day he died was February 13. Ben’s birthday was just two days ago. My cat Disney died on February 7. On Valentine’s Day I marked three years since the passing of my Aunt Eleanor. Since Grandma’s birthday is coming up, and things have been rough with these milestones, I want to respectfully acknowledge this date and my love for my grandmother, but I will wait until March 5, her birthday – at least a happier date – to share more about her.

I grew up in a house with Grandma. I was with her in that house when she succumbed to cancer. We were extremely close, knew the best and worst of each other and loved each other unconditionally.

Grief,Grandmother,Moana,Gramma Tala,Walt Disney Pictures

Grandma is a part of so many memories, and of much of who I am, and for that I am grateful. Just as Gramma Tala told Moana, “There’s nowhere you go that I won’t be with you,” I know that my Grandma watches over me, proud of my baking and that I have brought others some joy with the recipe that her mom taught her and she taught me. Given my lack of interest in religion, she would be especially touched that I continue the cultural tradition of making humentashen and have even experimented with new flavors. She would be tickled by my newfound skills at cookie decorating, too. We shared a love of fashion and although I have not crocheted any clothing, I know she would love the little critters that I crochet. I believe that mostly, Grandma would be delighted that I always feel her with me when I do these things, and that I often talk about her importance in my life. I cannot deny that it makes me sad that all of the people I loved the most are carried in my heart instead of actually here- February really brings that home- but I still feel fortunate to have known so much love and it’s a comfort to know that they are always with me.

I am thinking of you today, Grandma. You are always in my heart and I love you and miss you.

Grandma and I around 1990

On Ben’s Birthday, Love “To Infinity and Beyond”

This is one of the last cards I made for Ben.

Today is Ben’s birthday. Just one more lousy milestone date in February. I have found it helpful to make a plan that acknowledges the day and honors Ben, and that gives me the flexibility to go with whatever I end up feeling. On my Ben milestone dates, I have found that being on a train, though bittersweet without him, also provides the comfort of good memories and thoughts of him. Ben loved travel by train and we took some lovely excursions. I will always lament the time stolen from him and from us- the many journeys we would have taken- but I have accepted that he will travel with me in my heart.

I have been working diligently on my writing and decided to take myself on a little two-day retreat in Beacon, New York. It is a place I have wanted to visit- I love quaint towns- and where I thought I would be able to relax. Ben’s birthday always falls during our school vacation, so the timing of this getaway was perfect. I scheduled my return train for today.

My view from the train, as Ben would have captured it.

My goal was to spend time enjoying the scenery and taking in the inspiration to work on my picture books. I also had a book to read. I resolved that I would not be harsh with myself if I was not in a great frame of mind, distracted by my February blues. But, optimistically, I looked forward to the change of scenery, because I have found that conducive to writing.

I booked a room at the Roundhouse Hotel, with a beautiful view of the town’s creek and little waterfall. It was lovely. All night I could hear the water. Ben would have loved it. It was difficult to move beyond the despair of those thoughts. I am grateful that I am a person who has no problem doing things on my own. Actually, I enjoy spending time with myself. Still, I felt a little alone. I was saddened by missing Ben and the weekends we will never have, as well as the thought that I might never again have romance and someone special with whom to travel.

The view out my window.

Walt Disney said, “The way to get started is to quit talking and begin doing.” In the past year, I have made a lot of strides in my desire to write picture books. I even formed a critique group. This retreat certainly acknowledged my love for Ben and acknowledgment of the date, but, here in the present, it was also part of my “doing.” I kept my focus on reading and writing and how fortunate I was to have a beautiful view from my window and a sweet town to explore. I brought my book with me to read in cafes and at meals. I was sure to be back in my room to have plenty of time to write in the late afternoon and evening. As it turned out, I made great progress with my stories, not only working on one that is in almost final form, but also developing two other ideas.

Today, I woke up and wished Ben a happy birthday. I felt his presence. When I took my seat on the train, I put on my headphones and played The Beatles “Birthday,” as he always played it for me. Then, I listened to our favorite Disney instrumental albums, gazed out the window and also finished my book. It felt right. As right as life can be without him.

Returning home to the cocoon of my memories is also retreating to the way I have previously coped with my grief. My go-to on days like this is watching the videos that I created of Ben moments, and watching Ben’s favorite films. As I write this, Monsters Inc. is playing in the background. I do like these moments of communing with my memories, even if they bring tears.

Don’t we all wish we had that chip to reunite us, if only for a moment?

I am always most moved by the scene where Mike gets Sully that one missing piece of Boo’s door that allows him to reunite with Boo. I wish I had that little piece of a door. It seems that these milestone days open the door, but I am reminded that my loved ones are not really there. Just the memories. They simply are not always enough. Especially in February, when that’s all I have.

February will likely always be a melancholy month filled with the sorrow that all those beloved people are gone. Still, I must find the pixie dust. In Up, Ellie left a final message for Carl that said, “Thanks for the adventure. Now go and have a new one.”  I wanted to have a little getaway and to have some time to work on my writing in a different venue. In fact, that was a positive experience, and I am already thinking about my next little self-care and creativity getaway. It is a reminder that, as Joy and Sadness learn in Inside Out, sometimes joy arises from or coincides with anguish in unexpected ways. At least I know I have a huge cheering section of grim, grinning ghosts.

Happy Birthday, My Mickey! I hope you are singing and running, banging on drums and playing the soprano sax, eating everything your heart desires. I love you “To Infinity and Beyond.”

ALS,Caregiving,Grief,Walt Disney World, Disney
My silly Ben with his buddy, Buzz.