The beginning of July should be a great time for me. After all, I’m a teacher, and school ended on June 28. On the last day of school, I did my annual Snoopy Happy Dance and left the school building with a big smile on my face. The thing is, for me, summer is now filled with a lot of sad memories, even though I am reshaping my life and do have more joy. Today, July 6, marks the second anniversary of the day that Ben had a respiratory crisis and we ended up in the Emergency Room at Mount Sinai Medical Center, where we were met by Ben’s hero and doctor, David Muller, who would, over the course of that summer, become my hero, too. Today was the date when everything changed for us, because this was the summer where Ben succumbed to ALS.
I cannot help but think back to how that summer of 2015 began on a difficult note. Ben had decided, without conferring with me, that he would let go his private home health aide on the last day of school and that I would take care of him 24/7 for the summer, with a few hours of assistance during the week from a home health aide provided by hospice. To be honest, I was upset and I was also worried. Logistically, how would I even run any errands? Emotionally, I could not understand, and was hurt, that Ben did not realize how difficult-physically and mentally- it was to be his caregiver around the clock, or that he did not think it was something that we should discuss. Although, two years later, I can rationalize my thinking and my reactions, I still feel bad about it, because I would do anything to have him here and healthy today. As it turned out, that summer was spent at the hospital, I was at his side day and night, and I did not want to be anywhere else.
Yes, for me July 6 was the beginning of the end and the memories are still vivid. I remember being in the Emergency Room and meeting with teams of doctors, while also contacting our ALS chapter. I had spent so much time in Emergency Rooms with my dad that they were sort of my normal, but Ben being in crisis was not normal. I remember Ben having different masks on to try to find the most comfortable and effective one, while we struggled to communicate because he couldn’t speak and I could barely read his lips through the mask. And yet, I remember sweet moments, and laughing, too. I remember that I couldn’t kiss him when he had the Bipap mask, so we blinked our eyes tight to show a kiss. How ironic that July 6 is International Kissing Day! But, as the song from Cinderella goes, “So this is love” when you are dealing with ALS- a different kind of true love’s kiss.
Ben had always said that he wanted to do anything to stay alive, but once in the hospital, he wanted to rethink that choice. Many visits and emails with Dr. Muller helped us sort through a lot of that. I’ve written about this a lot on the blog, but it is worth repeating that I told Ben that I would support any decision he made, because only he could decide how he wanted to live and die with ALS (click here to read Sometimes the Right Path is not the Easiest One). It was not easy to grapple with the complications that arose during his hospitalization, and to have doctors explain that these complications were indicators that this would be life with a feeding tube and tracheostomy. It was heart-wrenching to have Ben say he was miserable and then, having made the decision to go to hospice, ask me to help him choose a good day to die. I don’t think those memories will ever become easier. I was not prepared to lose him because his drastic decline was so rapid. For the same reason, he was not prepared to have to make the decision to separate from the ventilator and leave.
It is touching and consoling that music proves to be so important to my healing and to my memories. Every single morning, I listen to a playlist of songs that Ben loved and that were significant during our relationship and that summer. Ben would love that. I cannot forget how the song “One Dance” was my reality check, and the song during which I completely gave in to the devastation. I am reposting the video with that song. To read my post about the song’s profound significance, click here.
Last summer was my first summer in many years without caregiving responsibilities. I felt lost and conflicted about all of the sadness mixed with the potential to actually enjoy the summer. The first anniversary of losing Ben loomed over the whole summer. I launched this blog during that time, and it has been invaluable in terms of thinking through my own emotions and feelings, dealing with grief, and interacting with so many incredible people who are also taking journeys with ALS or other illnesses, caregiving, and grief.
As I faced the beginning of summer vacation, particularly today, I have dealt with tidal waves of emotion and difficult memories that are woven into my glee at the summer freedom from school. I wonder if the approach of summer will ever come anxiety. It helps me to reflect on memories and events, even though my emotions are Inside Out. Intellectually, I can see that despite being someone who cries easily, I have grown a lot in the past two years, in terms of my perspective and my devotion to caregiving and caregivers, with an especially deep connection to people dealing with ALS. I think that would make Ben and my dad happy. I do find comfort in my conviction that Ben is in a place where he is free from the constraints of ALS, and he is talking, eating, dancing, walking and playing his music. At the same time, I miss him and still find myself talking to him and seeing things through his eyes. These mixed emotions have become a way of life. I chose to write this post because although it has been two years and there are still, and always will be, tears and broad spectrum of memories, I know that this is the unsteady rhythm of life and death and love and loss, but it’s all okay. Summer will be okay. Ups and downs are okay. I’m okay, even if I don’t feel that way at this exact moment. My Disney connections still keep me focused and able to deal with the sad times and the loss. After all, “Love is a Song that Never Ends” and, as Belle’s father Maurice said, “It is love we must hold onto.”