ALS

Peter Pan Understood the Many Goodbyes of Grief

ALS,Caregiving,Grief,Walt Disney World
Ben and I with Peter Pan and Wendy
Walt Disney World in 2006 Before ALS

“Never say goodbye, because saying goodbye means going away, and going away means forgetting” –Peter Pan, J.M. Barrie’s Peter Pan and Disney’s Peter Pan.

I have learned to co-exist with grief and to embrace my great and not so great moments. I have reshaped my life and maintain certain rituals that I feel keep me connected to my mom, dad, grandma, aunt Ellie, and Ben. Sometimes they make me sad, but they generally give me comfort and pride. When I think that these people to whom I was closest are all gone, it does make me feel alone. But, I try very hard to stay in a state of gratitude for the great friends who surround me and for the love I feel in my life. Still, an incident a couple of nights ago has had me struggling with the notion of goodbyes and feeling a little Winnie the Pooh “Oh, bother”-ish.

I have a lot of Ben memorabilia around my apartment. Sometimes I think that I want to change things around. I have our Disney photo shower curtain, our Disney photo throw, my annual photo calendar, and photos and trinkets everywhere. Ben’s face is the background screen on my laptop. One of my favorite photos of us at Disney is my lock-screen. Last week I was having issues with my laptop and a technician came to fix it. That’s always hard for me because Ben was always the person who took care of my laptop. This is the first laptop I purchased on my own and it has given me a lot of problems since I got it. Sometimes, if I’m feeling cheeky, I wonder if Ben is being a grim grinning ghost and creating these issues. Other times, it just unnerves me for a bit, reminding me that he’s not here to take care of me.

After the computer issue was resolved, I finally got around to updating my operating system. I had to reselect my background and lock-screen images. I kept the photo of us as my lock-screen and that felt right. At first, I found the one I always had of Ben. Then, I thought I might like to have a photo from a couple of years ago, when I went swimming with river otters in California with my best friend. A new wonderful memory. So, I selected that one instead. I immediately felt anxious. I was in the same place I was in when I thought about changing my photo calendar (click here for link), and I have continued to make that calendar each year. I felt like it is an insult to Ben and to our relationship. I felt like I was saying goodbye. Again. This time, even to memories. And, since his face was the last thing I saw when I turned off my laptop, I always said goodnight to him. I was lost.

This has been my laptop background for the past nine years. Taken at WDW pre-ALS

I have kept the photo with my friend and the otters as my background. It does not quite feel right- yet- but I am giving myself time. Today, I found myself looking at it and remembering the fun of that time. I have been enjoying life, creating beautiful new memories, discovering new hobbies and talents, preparing to retire. I am not lost in the past. But, something as tangible as replacing one photo with another seemed to represent saying goodbye in a very significant way. I was unprepared for that and I am not exactly sure how to proceed.

My new laptop background image.
ALS,Walt Disney World
A PhotoPass photographer caught this moment in front of the Castle at Walt Disney World. It was actually the first time we returned after Ben’s ALS diagnosis in 2010

I have said that I would like to find love again. I can intellectualize that having a home where Ben is on every wall and most shelves probably does not open me up to welcoming someone new into my life. Emotionally, I am still connected to Ben and, in a very abstract way, he seems to still give me a sense of security. Removing his picture was letting go of him. I don’t think I realized that even after nine years, I have not yet entirely done this. I have done so much to grow my life, but he is still vividly here. I’ve been so involved with my writing and other plans and projects that I have even wondered how much I really do want to look for love. I have not done anything to actually try to meet someone new. I kind of operate with the thought that Disney magic will make this person somehow appear. The thing is, when I realized how much the photo switch jarred me, I also faced the obvious- that I don’t have Ben’s love anymore. I loved being in love, being in a relationship. Having all these things around me oddly does keep me there.

Maybe my step to change the picture was, in fact, just my continuing and, I suppose, never-ending journey with grief. Maybe it was my inner self telling me that I want and am ready to take those steps to meet someone new. I really don’t know. I do know that I don’t want goodbyes to be forgetting.

Maybe I should just leave it to the pixie dust. For now, even without his picture as the last thing I see when my laptop powers down, I will continue to say goodnight to him. And, I think that’s okay. If I put a Pollyanna “Glad Game” spin on it, grief is hard and endless, but I’m glad for the opportunities to revisit what I was lucky enough to have and to see that there will always be  bright possibilities and potential whimsy (and love) ahead.

#grief #ALS #Disney

9 Years: Love Is A Song That Never Ends

ALS,Walt Disney World
A PhotoPass photographer caught this moment in front of the Castle at Walt Disney World. It was actually the first time we returned after Ben’s ALS diagnosis in 2010

My Dear Ben,

Today is nine years since you left this world. Once again, I am on an Amtrak train marking a milestone date that honors you. I had a lovely visit with Doris and Damian, and now it’s my visit with you. It gives me peace and comfort on these occasions to do something that you loved and that so reminds me of you and good times that we enjoyed. I wish we could have embarked on other journeys together, but please know that I take you with me in my heart.

I’m listening to one of our Disney albums as I type. But, the song that is most in my head is the same as last year on this day, Love Is A Song That Never Ends. It is especially fitting because on August 13, Bambi celebrated its 82nd anniversary.

Certainly, some people would say that after nine years, these dates should not continue to hit me so hard. I guess I don’t look at it like that. Love Is A Song That Never Ends. I am not paralyzed with grief anymore, but I am intentional about how I honor dates that are important. This was an excruciating day nine years go. Saying our vows at your bedside. Then, convening people who loved you to stand by your bedside as you separated from the vent and left the world, surrounded by love and music. Those are not memories that will fade. Nor will the memories of all the love that day. For you and for me.

Still, here on the train, typing on my tablet, I am in a zone of good memories. Yes, I’m shedding some tears even as I type, but I think about how happy you would be staring out the window, and how you would love that I am using an iPad that I researched and purchased, the way you taught me to do.

And, here I am. This was a summer where I made my plans and did not struggle with your absence. I accept and embrace that I’m on my own in these things. I made my annual visit the Chicago area and fully enjoyed my time with friends who are like family. I returned to one of my very favorite places, Georgia Aquarium, which I had not visited since the summer before COVID. This is a particularly significant place because going to this Aquarium was one of the things I chose to do after you left that was completely new and “me.” Doing the animal encounters is something that gives me profound joy. Since you and I were penguin lovers, meeting penguins was a difficult encounter because I knew how much you would have loved it, so when I returned the second time, I did not do that encounter. This year, I resumed it, and it was quite fun. Although they do entertain me and are such delightful characters, I do not gravitate to the penguins the way I did with you, and I think it’s because it was such an “us” thing and simply doesn’t feel the same. The sea otters and beluga whales are my passion. They are my own. I know you would enjoy them, but those are my new special memories. I can’t help but wonder if you and my dad somehow intervened so that I got to feed and play with sea otter Gibson and beluga baby Shila. Gibson has had my heart since I watched on social media as he was rescued as a teeny pup. He is such a special boy, even adorably sucking on his paw as he floats on his back. I am still feeling the thrill that I got to feed him and whisper, “You’re my favorite, but don’t tell the others!” Shila has had my love since she was born to Whisper 4 years ago. I love Whisper, and Shila was as endearing, playful and fantabulous as I had expected. I do like to think that you and Daddy made it happen that she was the beluga that I got to work with. Of course, I have always loved animals, but I have discovered how much interacting with them feeds my soul. I seek out these opportunities and will continue to do so.

This is Shila.
A better look at Shila.

The hard parts are the things we loved together or that you especially loved. The dolphin show choked me up because I will always remember you at the first dolphin show we saw at Mystic Aquarium, our first weekend away. It was the first dolphin show you’d ever seen and you were enthralled. It was during that show that a little penguin wandered in front of the tank and the waddling delighted both of us. It will always break my heart that you were deprived of so much life. That we were deprived of time together. The time we had at the end of your life allowed us to say and express so much. But, then it was over.

Spending time with friends and doing some new things is something I treasure. So, I see that as growth. Still, you are always there. I guess some people would say that’s not entirely healthy. Maybe they have a point. It probably does keep me from really opening up to looking for a new relationship. However, I see progress. I do not feel the guilt that I used to feel about enjoying life, or, even living life. I do feel sadness and I often feel alone, rather than lonely. I think my biggest struggle is that the people I was the closest to in my life all now reside in my heart. So, I need visits like today.

I believe that you would be happy with all of the writing I’m doing. You know I always wanted to write children’s books and I’ve made a lot of progress with my picture book manuscripts. I love the creativity and I am inspired by the people and new friends that I have met in the progress. I have delved into previously untapped parts of my spirit. When I finish this post, I am going to read through the manuscript I wrote based on this blog. Throughout my career, I have had a lot of articles and other pieces published, and you were always my champion. It is exciting to continue to develop my skills and tap other writing styles and areas of imagination. I actually spent a considerable amount of time this summer alone and writing, but not really feeling alone in those writing sessions. Combined with travel and time with friends, it has been one of my most lovely and productive summers. That, too, is progress. After you left, summers were spent reliving your last summer at Mount Sinai Medical Center. I struggled with how to balance those memories with stepping into life. I think that I have finally found that balance. Am I late? I don’t know. As I tell other people, everyone has their own timetable.

Last week, a music album was released, The Impossible Dream. It was made by an actor, Aaron Lazar, who has ALS. The Broadway community rallied around him and a video was released of many performers singing The Impossible Dream. Listening to that song, one of my favorites, but in the context of ALS, wishing for a cure, and your bravery, as well as that of all those who battle ALS, had me crying as I have not cried in a long time. This date looming only amplified my emotions. It’s all okay. When I think of people who would not hesitate to tell me to stop or that it’s been too long (or who would say it behind my back), I say that I am who I am and I feel what I feel. As Winnie The Pooh would say, “How lucky am I to have something that makes saying goodbye so hard.” I guess another area of my growth has been a stronger ability to dismiss and not dwell on unhelpful, unenlightened commentary.

The important thing about today is the reminder that Love Is A Song That Never Ends. I may choose different ways to honor you, but there will always be love for you and you will always live in my heart.

As always, my hope for you is that you are in a place where you are walking, running, eating, singing, playing music and surrounded by love, especially the love that you feel coming from me. I miss and love you every day, to infinity and beyond.

Love,

Abby

On a Significant Date, “Love Is A Song That Never Ends”

ALS,Walt Disney World
A PhotoPass photographer caught this moment in front of the Castle at Walt Disney World. It was actually the first time we returned after Ben’s ALS diagnosis in 2010

For me, today, July 6, will always be the day everything changed. It’s not a typical milestone date. No diagnosis, no birthday, no death date, but the day that Ben went into the hospital. Dates are important to me, for better or for worse. One of the many reasons this date is so significant is because it became the day when we could no longer deny or postpone Ben’s fate with ALS. So much happened leading up to this day. I’ve documented it often, and you can click here to see the details of that date. When choosing a quote for this post, the unwavering feeling is the song from Bambi, “Love is a Song That Never Ends.”

As a teacher, the end of June and beginning of July is a happy time. This year was particularly challenging, so I was more exhilarated than usual to leave the school building. I am trying to focus on the future, because I have put in place exciting prospects. Still, the memories of that summer nine years ago are like Eeyore’s gray clouds. I don’t relive each and every detail anymoreI allow myself to feel the sadness, grateful that it is no longer as paralyzing as it once was. I also continue to reflect on that time—where I was, where I am, how far I have come (or not).

Today, I happen to be home with a bad cold and laryngitis, so writing, remembering, and reflecting are perfect activities. Tears have fallen, and that’s fine. I will watch my “One Dance” video and listen to the lyrics, remembering how that song was the one that allowed me to acknowledge to myself that Ben was never coming home from the hospital, that we would never dance again, and that he was going to die. Yes, that may have been obvious to everyone else, and it is not that it was not obvious to me, but being alone and facing that in our apartment was a terrible heartache. An important message for me in the original Inside Out is that we can aim for joy, but it is 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.

Making summer plans had become a conflict of grief and wanting, or knowing that I should want, to move forward with my life. I made my plans with a clear conscience. I have no rules about my grief anymore, and I embrace it when it appears in good and bad memories. I will visit friends, human ones and my animal buddies at the Georgia Aquarium. I have again become accustomed to traveling by myself and I appreciate my good friends. I am also comfortable with wishing that one day, I will have a new love for company. I still don’t act on those wishes, leaving it to the fairies to deliver to me. But, I am living. Ben is always with me, and that’s okay, too. In fact, I wouldn’t want it any other way. After all, “Love is a Song That Never Ends.”

July 2024 calendar. Slightly different arrangement but same photos and memories. I guess that’s a good analogy for grief- the memories may shift somewhat but they are still there and strong.

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.

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!