My dear Ben,
Yesterday was six years. For the first time, I could not bring myself to write. As always, I spent the evening before reliving that last evening spent in the hospice unit. You slept most of the time. I spent the night pacing the halls, sometimes sitting in your room and sometimes in the family room. I wrote in my journal, trying to make sense of the fact that you were going to leave the next day. I could not quite imagine what that would be like, and frankly, I was scared. I’m still grateful that you left this earth surrounded by love and music, and even Disney. It still also hurts to my core. I have repeatedly watched this video, which I made on the anniversary of my first year without you. I hope you feel the love. I believe you do.
This year, for the first time, I made a plan to go out last night, on this milestone date. It is hard to believe that it was not a Disney event. I saw Bruce Springsteen on Broadway. I always wanted to see Bruce in concert but knew that I would never be comfortable in a concert crowd, even without the COVID issue. I was just so happy that I could see him in my comfort zone- a Broadway theater. On the day tickets went on sale, I got on the virtual queue and was surprised that I cycled through pretty quickly. I clicked on every single date starting with opening night, and I was thrilled to finally find a ticket. I didn’t even check the date. When I clicked the checkout button, I saw that the date was August 26. I hovered for a long time because it seemed so wrong to go on a sad date to an event that you should not have been cheated of attending. Also, I never know how I am going to feel on milestone dates like this- unfortunately, I have many. I went back and clicked on all the remaining dates. Nothing. I started to wonder if you were sending me a message. I know that you send signs to me. Some people would say I construe things as signs, or I look to make them signs. Maybe. Maybe not. What matters is that I see them as signs, and it comforts, validates, and helps to guide me. I decided to get the ticket, figuring that I wouldn’t know how it felt unless I went. It might be a mistake and it might be okay. I do test the waters.
From the time I secured that ticket I was conflicted. Should a milestone date continue to paralyze me? Is it more respectful, or even safer, to stay home with sorrow? I still have no firm answer. I still think about the quote from the live action Cinderella: “time passed and pain turned to memory.” Should it? For me, the pain is still here. It is not just a memory. Yes, it has shifted and it isn’t as acute on a daily basis. I have learned to co-exist with it. I go with the happiness, and I go with the tears.
The week was spent thinking about and dreading August 26th yet knowing that I was also going to an eagerly awaited concert. I felt your presence all week, which is always a good thing. Since I am writing a book from my blog posts, I have been revisiting daily so many memories, photos, and emotions. All of this added to the stress about yesterday. As is my tradition, I watched Monsters, Inc. I also made Mickey waffles, thanks to Kathyrine, my lovely former student. I gave Tinker Bell the Buzz Lightyear catnip toys that I ordered from Chewy, and I told her more about you. She loves these toys so much that it makes me think she knows that they are extra special because of you. I looked at our bevvy of videos and pictures.
I waited until the very last minute to get ready for the performance. As I walked to the subway, a woman in a scooter like the one you had was riding towards me. I moved to the side to let her easily pass, but she came right up to me, stopped, complimented my skirt, and signaled with an okay sign as she told me that I looked beautiful. That’s an odd occurrence on many levels, but I have had a couple of interactions with angels, and I believe her to have been one. I spent the train ride to the theater wondering if you had sent that message to let me know it was good that I was going to the performance, and it made me feel better.
At the theater, I purchased two tshirts and a tote bag- I needed proof that this Disney and Broadway showtune loving gal did, indeed, attend a Springsteen concert! I spent most of the time waiting for the show to start thinking about you– that you would have been happy to be there, that you should have been there, that it was surreal for me to be there. I don’t think I thoroughly convinced myself or anyone else that I was truly excited about it.
The lights went down and the show was about to start. That moment is always magical for me. Bruce entered the stage and I felt myself smile at seeing him. He told beautiful stories and sang songs, some of which I knew well and others that I do not think I had ever heard. It was just Bruce, but his wife, Patti Scialfa, joined him for a couple of songs. With your knowledge and love of music, you would have loved this concert, though I am pretty sure that you were there with me. He told stories of his youth that were funny, touching, and poignant. He talked his family and friends, and notably about the loss of his dad and friends who died in the Vietnam War. He talked about Clarence Clemons and how much he missed him. He said that it was hard for him to believe that they would never enter a stage together again. He conveyed that with his songs and performances that he was able to visit with these people – ghosts, as he called them- and that they are always with him. I cried. At the same time, it was something that I needed to hear. For all I know, you wanted me to be there and to hear that message. I will always miss you, and there will always be a sadness that is amplified on days like yesterday, but you will always be with me and will be a part of what I do.
After the concert, I hailed a taxi. Once in the car, I started to cry. I think all my emotions converged- sadness about the day, worry about going to the performance and how I would feel, if I was doing the right thing to plan to enjoy myself at a performance on this date, and having had a profound experience that touched me deeply. I posted on social media about the incredible performance. Indeed, it was an emotional event for the concert and for the lessons.
I awoke this morning and again began to cry. I have been struggling all day. Sometimes, it is like that. I brace myself in anticipation of the tension of each milestone date, and then the next day is worse. That is what is happening today. I am sorting through the messages I believe that you sent and Bruce’s words. Bruce’s music is infused with all his memories, whether it is the old tunes, the new ones or the ones he has yet to create. I guess listening to him describe it led me to the revelation that my past has brought me to my present, where in my writing, volunteer work, and even the formation of my club that fosters a compassionate school community, I visit with you, my dad, my mom, grandma and the other people I’ve loved and lost. It is not about how I choose to honor a milestone date. It is how I choose to live, with the old and new memories. That doesn’t yet make it easier, but it helps.
I do take every opportunity to honor you, my Ben. I hope you feel that. I hope that you are enjoying what I am absolutely certain is your constant presence at Walt Disney World as the grim grinning ghost you wished to be, and that you are, as you always dreamed during your battle with ALS, walking, running, talking, singing, eating and playing music.
I love you,