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