Seven Years- Grief, Love and Life To Infinity And Beyond

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

My dear Ben,

Yesterday marked seven years since you left the world. As always, this time is filled with such difficult memories. I do not know what seven years of grief should feel like. I would never venture to suggest to anyone else experiencing grief what it should be like. I only know what I feel. I sat in our bedroom remembering our last night together 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. But, it also still hurts me to my core.

I never know how I am going to feel on August 26, but my plan was to go to Central Park to bring watermelon to the turtles. I know you would like that, and I know that I feel you with me when I am there. After that, I would watch the new Pixar film, Lightyear, which I know you would have been excited about because of your love of Buzz.

The turtles were delighted with the watermelon, and I had my walk and cry. Central Park is very healing and peaceful for me. I listened to my Ben Playlist and immersed myself in memories. I also let the squirrels cheer me up and I fed them an assortment of hazelnuts, walnuts and peanuts. That is something that has come to bring me a lot of joy.

Central Park- the water was murky but quite a crowd of turtles came for the watermelon fiesta!
I continue to toss coins and make wishes for Ben and my loved ones, and for myself, each time I pass Bethesda Fountain. I will never stop.

Unfortunately, it was also unbearably hot and humid. It reminded me of your last summer, when even as I left the hospital, sometimes in the middle of the night, it had not cooled down at all. I could not make the walk home from the Park and resorted to a taxi for just a few blocks. I came home feeling physically and emotionally awful. Perfect timing, I suppose. Lying on the sofa for hours seemed like the old days of immobilizing grief. I am glad and relieved that I recognized that I was not returning to that place. But, if I was having a setback, I would simply allow myself to  have my moment.

After a while, I did watch Lightyear. Something that helps me when I miss you and feel that you have been cheated of an experience is to try to see and feel things through your eyes. So, I watched the film through your eyes. It began much as your treasured Star Trek episodes, with Buzz narrating just as Captain Kirk did. I cried as I laughed out loud and turned to your chair, commenting to you. I cannot deny that it breaks my heart that you are not here to see the film, even if your spirit is present, but I do feel like we are somehow together.

These US postage stamps just came out. I know Ben would love them!

I think you would be really happy with the film. Although it is not Buzz as we know him from the Toy Story films, I think you would say that it was clever that a film was made about the Buzz that led to his beloved action figure. It has the science fiction aspects that you would get a kick out of, particularly because of the Star Trek kind of references. Buzz has to deal with I.V.A.N., the Internal Voice Activated Navigator, which is autopilot with a series of useless recordings like those that we all know and dread. It also reminded me of the things that were repeated ad nauseum by medical and other professionals that you never wanted to hear, denied and defied. They were infuriating but sometimes made us laugh.

This is one of my very favorite moments, when, despite feeling week and un-superhero-like, Ben met Buzz, who made a big fuss over him!

There are also important messages that touched my heart about grief and the passing of time. Buzz keeps reliving a travel plan, and for him time barely moves, but those around him age and pass away. He has to decide if and how to pursue his mission- to stay where he is or to keep trying to solve the scientific dilemma. Staying where he is would allow him to live and age with the people he knows. As he sees time pass without him, at one point, he meets an older version of himself. Imagine looking at how your life and decisions play out. Imagine not being happy about it. Buzz also has the option of going back in time, though that would also remove some of the people he loved and knew in the life he did live. Throughout all of this, he is watching others live out their full lives in what we consider a normal sequence. I thought of you. You were cheated of a long and healthy life. We were cheated of growing old together.

If it was possible, should we go back in time? Or, jump ahead to see what happens and then maybe even go back and change things? I wish you were here. I wish you never had ALS. But, if we could go back to before your diagnosis, would it mean that you would not get it anyway? What else would change in terms of people, relationships and shared journeys? As things turned out, I am grateful that we had the opportunity to grow very close and say the things that were important and needed to be said. Maybe things just have to happen the way they do, even though they are not as we envision the story and without a necessarily “happy” ending. I have no answer.

Ultimately, Buzz and his crew want to know that they matter because of the missions they undertake. Please know that you mattered. You STILL matter. You are a part of everything that I do. Your experience with ALS led me to support other caregivers. It encouraged me to follow my passion for writing, which has opened new doors for me. It inspired me to find ways to build and nurture a caring community in school. It was hard to face breast cancer without you, but you, and our journey, did help to guide me. Although I still have a hard time embracing it, you let me know that I am braver than I believe, stronger than I seem and smarter than I think. I wish you were here to actually be a part of my life as it unfolds, twists and turns, yet you are central to all of it.

As is my ritual, I read through each anniversary blog post that I have written since the first year after you left. I see that I am purposeful about honoring you, while gaining more control over my own life. I remain reflective, and frankly, I think that is a good thing. I still do watch the video that I made on that first year. And, I made Mickey Mouse waffles, which make me smile because of how much you loved them. Also, because the waffle maker was a gift from a very lovely former student who knew and cared about the significance of waffles in our story. I was very pleased with my plan of visiting and feeding our turtles and watching Lightyear, because it was a way to honor you and us, and to do something new while still looking through your eyes. Yes, I do feel lonely, but I also know that you are always here for me.

Ben always said that waffles taste better when they are shaped like Mickey!

After Lightyear, Tinker Bell and I sat with your Sullys and watched Monsters, Inc. I will never fail to be moved when Sully places that one last piece of the door that will let him see Boo again. I wish I could have that moment, but I know that you are always with me, and I am so thankful for the time that we had.

Halloween 2012, the day we got engaged. Sully and Mike were very excited to celebrate with us!

Ironically, though of course I live and breathe Disney quotes to make sense of life and loss, it was seeing Bruce Springsteen on Broadway last year on the sixth anniversary of your leaving that has had a tremendous impact on me (click here for more). I have reminded myself countless times of when Bruce 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. Bruce really helped me. These milestone dates are times that I visit with you, and they are difficult days. More importantly, now, you are the grim, grinning ghost whom I know with certainty is always haunting me, in a good way!

Now that you are free from ALS, I hope that you are running, eating and making music. I love you and I miss you every day.


Your Minnie, Abby

Walt Disney World, Halloween
Ben and I at Walt Disney World, Halloween 2011. Good memories are always a comfort.