Today is the 63rd anniversary of the release of Disney’s Lady and the Tramp. It was always a favorite of Ben’s and mine. We actually loved to sing the “Siamese Cat Song”; in fact, I used to sing it to my first cat, Tiffany (but she preferred “Born Free,” to which she actually meowed along!)
A poignant quote came from Tramp to Lady, when he told her, “Aw, come on, kid. Start building some memories.” Memories played such an important part of our lives when Ben was fighting his battle against ALS. They have continued to play a big part of my life in and coming out of the thickest fog of grief. But, as Lady had to be coaxed by Tramp, I had to coax myself into delving into new adventures that will become a part of my treasure trove of beautiful memories.
Memories became increasingly significant to Ben, particularly as he became more homebound. He loved to look at our photos and videos from Walt Disney World and to listen to the theme park music soundtracks. We could do that for hours. It was my motivation for designing the photo calendars, throw, shower curtain and towel (click here to read more about them)– Ben was surrounded by our photos everywhere in our home. It’s nearly three years since he’s left and I remain surrounded by those things. They are a comfort for the memories the photos hold and for my memory of the happiness that I gave to Ben with those gifts.
We were so fortunate to be able to visit Walt Disney World four times after his diagnosis. Each time, we tried to recreate our favorite memories, attending our favorite shows and visiting our favorite attractions. We did, at times, lament the attractions that Ben could no longer ride. But, we laughed that we could take the “It’s a Small World” boat repeatedly because there was never a long line and we got a boat to ourselves. Ben’s attitude was amazing. He focused on what he COULD do and, thanks to the amazing Disney cast members, we could do almost everything.
Recreating memories was, however, a tricky endeavor. Given Ben’s physical changes, it had the potential to be incredibly fun or incredibly sad. However, we were so grateful to be able to return to a place that was so important and filled with joyful memories. At Walt Disney World, we were distracted by the excitement and caught up in the fantasy. Ben loved and frequently commented about that. Once home, when Ben looked at photos, he scrutinized how he looked and how his abilities had diminished from visit to visit. For me, looking at photos is sometimes filled with splitting my world into pre-ALS and post-ALS distinctions and observations. Still, more than the physical changes, I see the joy on his face.
Our final visit to Walt Disney World in 2014 was uniquely memorable, not only because we were not sure that we would ever get there again, but also because it was filled with the creation of new memories. Frankly, I was worried that Ben would be disheartened at not being able to do a lot of the things that we used to do. Also, he could not eat many foods, so going to the restaurants that we always loved might have been an upsetting experience. So, I organized several surprises- new and different events that gave us the opportunity to create new memories. My plan was a resounding success, which makes me so proud and grateful. I wrote about our visit in a prior post, which you can see by clicking here.
Ben and I had 16 years and a dozen visits to Walt Disney World, all filled with wonderful memories. When I was the caregiver of my dad and Ben, those memories sustained me and took me from one Walt Disney World visit to the hope of another, and I lived vicariously through my friends, reading about their adventures on Facebook and occasionally, and proudly, posting photos of Ben and me at Walt Disney World or out in our neighborhood when he was still able to ride his scooter. Our friends did like to see him out in the world. I hid in those memories for some time after Ben died. I know that some people think that this blog is a way to stay hidden in those memories and in the past, but the perspective I gain and thoughts shared with other caregivers in this writing process lead me forward.
It took me quite a while to accept and embrace that it was time to create my own new memories. At first, I was unable to figure out how to begin to reshape my life without Ben and with an emphasis on myself. It actually put me in tears when people told me it was time for me or time to take care of myself. I went through motions, tried to pick up pieces of my life, but I was consumed with grief and confused about what my life should be. It was particularly difficult to go out and be distracted and even somewhat happy, just to return to an empty apartment and reminded of the loss and alone-ness, as well as guilt for even trying to enjoy myself.
Last summer, I fought the floundering feeling of doing things on my own and for myself, but I created delightful new memories with great friends. Ben was a huge part of everything I did and I saw things through his eyes, keeping him very close to all of my experiences. I was so excited to go to the Bean in Chicago, because Ben’s nickname was Mr. Bean. Maybe I talked about him too much, but, even now, he remains so present in my life.
A couple of months ago, I started thinking proactively about what I wanted to do during the summer. After all, I’m a teacher so I have lots of time. I find that I have faced this summer with less trepidation. It’s not yet easy, and maybe it will never be easy, but, in a shout out to The Hunchback of Notre Dame, which is also celebrating the anniversary of its release today, I will quote Quasimodo, who said, “Life is not a spectator sport. If watching is all you’re gonna do, you’re gonna watch your life go by without ya’.” I am looking forward to seeing people I love, especially visiting my friend and her family again in Chicago- I have my Cubs jersey all ready to go! And, I am making a dream come true by going to the Georgia Aquarium to have encounters with otters and penguins. I am obsessed with otters and Ben and I adored penguins. The winter of his last birthday, I had arranged with a fairly local aquarium for us to meet penguins, but that winter was brutal and he was afraid to travel. I do feel a little guilty about enjoying this experience without him, and yet, I feel like I am doing it for us. I know he will be with me, and he will still have a part in these new memories.