Sometimes Grief Means Trying like Quasimodo

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Walt Disney World Halloween 2010

Welcome November. October is a bittersweet month for me. I love fall, I love Halloween, and it is my birthday month- all good things. Still, there are so many memories in these events that I do struggle. This year felt like a good time to try to make some shifts.

Halloween was a favorite time of year for Ben and me. We didn’t love to dress up, but we loved to go to Walt Disney World. We were like two little kids at Mickey’s Not So Scary Halloween Party, where we went trick or treating and danced with our favorite Disney buddies. We delighted in the Boo To You parade.

Halloween 2012. Eeyore’s wearing a birthday hat!

When we were home in NYC, we went to a local street party, where a few blocks transformed townhouses and apartment buildings into magnificently decorated haunted houses and adorably costumed little children collected their treats.

I was grateful in 2019 to return to Walt Disney World for Halloween with my friends. It wasn’t the same, but we paid tribute to Ben and I created wonderful new memories and saw that I was adjusting to my coexistence with grief. (click here to see the post about this).

Looking back and being happy in the now!

In more recent years, I have pushed myself to walk down the NYC block as the brownstones have begun to be decorated. It is always emotional, but I remember the joy. I take photos, especially those that I know Ben would like, especially because he loved to take photos as I do. It is possible that one day the tears will stop. I channel Quasimodo and take my steps towards the block saying, “Today is a good day to try.” I know that I am okay. Actually, the emotions let me reflect on my feelings, my growth (or not) and paths I might follow.

One of the streets of the block party.

Since I lost Ben, one of my daily rituals has been to listen to my Ben playlist on my way to work. This is a list of songs that were meaningful to us for various reasons. Once I listen to that playlist, I choose any music that strikes my fancy. The important thing for me is that I start my day with our music, especially because music was so important to Ben.

This year, on Halloween, I made what felt like a very significant decision. Instead of our playlist, I played the Disney event soundtrack with the Halloween parade and Halloween music. Ben would have been playing this all day on Halloween. It felt right to play it.

Granted, this is still music deeply connected to Ben and to our relationship. Still, until this day, I would not have deviated from my daily ritual. I would have felt it was somehow disrespectful. For me, this slight shift was significant and noteworthy. It showed my ability to evolve and find ways to keep growing and frankly, living.

For me, when I feel that I want to challenge grief, I channel Quasimodo. In a recent post, I wrote about changing my laptop lock screen and background images, which have always been of Ben. I tried to live with my background being different. It didn’t work. Every night, I say goodnight to Ben, and not seeing his image was too unnerving to me. I decided to simply switch the images. Now, I have my otter image as my lock screen, the image that I see each time I tap the laptop or take it out of sleep mode. But, Ben is my background. I tried, and I did make progress, but I had to make it work for me. I didn’t discuss it with anyone. I’ve learned to listen to myself more. I even applaud myself when I try or I test myself.

I watch a lot of widows and widowers step forward in ways that I feel are faster and more adept than the way I slowly amble down paths. I remind myself that we all choose our own paths. With retirement approaching in just a few months, I am once again figuring out how to reshape my life. I certainly have my concerns, but I look forward to traveling more and to working on new projects, ranging from writing to working with caregivers. I also feel myself embracing the notion of finding- or making- room in my life for new romance. I see myself looking at making some small changes to my apartment. Right now, these are only internal dialogues without actual actions, but they are positive. Each day I remind myself that “Today is a good day to try.” When I find myself feeling a bit more ready, instead of chastising myself or worrying about how I am coping with where Ben belongs in my life, I prepare to take yet another step, and sometimes that means momentarily standing still and taking it all in, at my own pace.

Peter Pan Understood the Many Goodbyes of Grief

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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.
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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

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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

A Birthday Tribute To My Mom

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Today, July 8, would be my mom’s birthday. Although, I have written quite a bit about my mom and how close we are, I like to write an annual birthday tribute to her.

Although it was nearly nine years ago, my memory is so vivid of spending her birthday in the hospital with Ben, lamenting the overwhelming and inescapable feeling of alone-ness, not knowing what was going to happen with Ben but acknowledging that ultimately, he was going to join my mom as one the beloved people in my life that I would lose. I do feel so fortunate to have known and shown so much love in my life. And, I still feel much love. Still, at times I feel terribly lonely and ungrounded. I guess I miss the sense of belonging. I miss my mom and the closeness that we shared. I even miss what could easily be ten phone calls a day about everything and nothing. Sometimes, it is exhausting to miss so much.

We were always Mickey Mouse fans!

My mom is the person who introduced me to Mickey Mouse and instilled in me an eternally child-like wonder. When we were in London together, I remembered how excited my mom was to go to Paddington Station and the Paddington store in Paddington. The woman in the shop was so taken by my mom’s exuberance over the little bear and being in the shop- it was hard not to get caught up in my mom’s child-like delight- that she excitedly handed my mom a Paddington Bear doll to hold while I took her picture. Each year I put the little Paddington ornament she got there on my Christmas tree so that she is a part of the tree. I’ve always returned from visits to London with something Paddington to remind me of her. So, it wasn’t all Disney, but Mommy’s first true love was Mickey.

London 1987. My mom could not wait to visit the Paddington store!

I look at our old photographs and remember the laughter. I am proud to have inherited her ability to celebrate her inner child, her youthful demeanor and her joyful spirit. I still miss our shopping and theater excursions in the city. Sometimes people are surprised that she passed away more than 25 years ago, because I talk about her so frequently. She is always dear to my heart and so much a part of who I am, but also, of the person I aspire to be.

My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.

My mom was my example of the consummate caregiver, perhaps being too selfless. She was so generous and kind, always smiling as she balanced the needs of everyone around her. She tended to my grandmother, who lived with us, and also took care of my great-aunt in the nearby nursing home, and my great-uncle who insisted on living alone but needed much assistance. I did see that her kindness and desire to support everyone took a toll on her. It has influenced me. After she passed away, I followed her lead and although I did not realize it at the time, I was stepping into the role of caregiver, tending to and trying to bring cheer to my dad and my grandma, and always visiting my great-aunt and great-uncle. Like my mom, I put my dad’s and Ben’s needs before my own. However, remembering my mom’s selfishness and how it drained, disappointed and hurt her, I am not as selfless. I think that some of my decisions, particularly with regard to family, would have saddened her and I sometimes struggle with this. Maybe, in some way, she led me to find ways to set boundaries and remain compassionate.

On her birthday, I will continue my tradition of watching The Little Mermaid, because it was one of the last films we watched together. I love to remember how much we laughed when we watched it together, particularly when we looked at my grandma, who just did not understand our amusement. I wish that I had gotten a chance to visit Walt Disney World with my mom, but she has always been present when I have been there. It always touched my heart that Ben was so aware and acknowledging of her when we were there. I know she would have loved Disney+!

I proudly say like mother, like daughter!

Happy Birthday, Mommy! I love and miss you every single day.

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

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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.

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