What Edna Mode Didn’t Know About Grief

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There are times that I know exactly what I want to write about. There are times when I have a plan but an event arises that causes me to write about something else and postpone my original post. For the past couple of weeks, with my birthday and Halloween as events that literally haunt me, I was struggling with so many thoughts and emotions that I couldn’t quite organize my thoughts and simply did not want to fight with myself to make sense of everything I was feeling. I kept rereading my posts from previous years and thinking about this year and how it is different, and suddenly this quote by Edna Mode stuck out to me: I never look back, darling. It distracts from the now. This is a quote that will always intrigue me and yet, as much as I love Edna and her indisputable fashion sense and see her point, I disagree.  Looking back has its value and significance. Rereading my blog posts and revisiting milestone dates over the years, as well as moments in caregiving and grief, has allowed me to reflect on how far I have come and also where I can continue to grow as a person. This was particularly important to me at this time.

October is always a challenging month because aside from my birthday and Halloween being a holiday that Ben and I adored, Ben even proposed to me on Halloween at Walt Disney World! I still avoid my birthday to a large degree, and I have wondered if I would ever be able to feel the fun of Halloween without Ben. I did not know if I would ever be able to return to Walt Disney World without Ben. I knew it would not have been wrong to return, but it didn’t feel right.

This was my fifth Halloween without Ben. It was last year that I was finally able to go through our collection of Halloween decorations, many from our last trip to Walt Disney World. I chose to display a couple of things, and I got a few new things in case being surrounded by the old memories was too difficult. It was interesting to me that a Halloween countdown calendar figurine, which I reluctantly displayed, proved to be very comforting. This was something that I got for Ben as a surprise. I had placed it on his desk for him to see when he woke up and was situated at his desk by his home health aide. He loved it and thought it was hilarious to count down to Halloween. I thought that I might be too unnerved by the idea of counting down time, since Ben’s battle with ALS seemed like a countdown in his life, and the memories of giving it to Ben when his ALS was progressing more rapidly. But, unpredictable as grief is, using that countdown calendar and saying a few words aloud to Ben every morning, has continued to bring a smile to my face. Then, I play the little wind-up music box that plays “Grim Grinning Ghosts,” from Walt Disney World’s Haunted Mansion, which I purchased last year because it reminded me of Ben and I know he would love it. He always said that once he was gone he would be a grim grinning ghost. These things and rituals, including writing blog posts, help me to look back on my memories and see that I am slowly and steadily gaining control of my present.

Our Halloween countdown calendar figurine

I do love to remember the many wonderful Halloweens that Ben and I spent in Walt Disney World. I am most proud of our last Halloween at Walt Disney World, because it was filled with so many surprises that I had arranged for Ben. I was July, after all, so arriving at our hotel room that was decorated like a haunted mansion was a true surprise for him! To read about that visit, please click here. I continue to play the soundtrack to the “Boo To You” parade from Mickey’s Not So Scary Halloween Party. Ben loved that parade even more than I did and I loved to watch his face at the sight of the first float. Was it living in the past? Yes, for a while, and that was important to me. I needed, and still do, to vividly hold close to my heart those wonderful, romantic and whimsical times. I also needed to remind myself that although I didn’t always do things as I would have wanted, I loved and dedicated myself to Ben and always tried to be the best caregiver that I could be. By reliving memories, I keep his spirit alive.

2011- Mickey’s Not So Scary Halloween Party. I held Ben on one arm and Minnie held him on the other!

Something that stood out to me from a post I wrote in 2017 was that I referred to myself as more of an observer than a participant in Halloween. That was something profoundly true about my entire life after Ben left this world. For a while, I went through motions and floundered, not engaged in life. I accepted invitations to socialize but ended up feeling terribly alone and lonely. When Halloween arrived, I lived in my memories and grieved the Halloweens that Ben would not have and that we would not enjoy together. I lost myself in our photos and videos, just as Ben had done throughout his illness, crying for the loss of Ben, the life we had and the life we would never know. I brought candy for my students and enjoyed seeing the costumed kids on the streets, but I did not take part in any festivities. Last year, I baked my signature Halloween cookies, something Ben enjoyed watching (and eating!). Baking and decorating cookies is like my therapy, so I was able to get lost in memories and the deep connection to Ben and to my grandma, who taught me how to make my great-grandma’s recipe. Grandma really would be delighted by how much I have done to decorate them. Still, emotionally, I was not a part of the holiday. I was trying to keep my Halloween spirit by recreating rituals that existed for Ben and me, but past was conflicting with present. I don’t know what I even expected or wanted. As I reflect on the past few years, I think I can say that the fact that I did question how and when I would step back into the world of the living indicates that I did not want to stay in the past. The fact that I do look back at my posts to see if there have been some shifts, and hoping to see them, says that I am ready to make those shifts. Edna makes a point in that if I had only lived with my memories, I would not have even begun to consider how to tiptoe back into the world of the living and thoughts of reshaping my life. I had to find a way to look back, be present AND look ahead, and in grief that is a daunting task. It could only be accomplished in my own time and that’s always my advice to those in grief who ask when things will change or how long they should grieve in any manner. I went with the flow of my emotions (and, truth be told, the flow of the tears). I didn’t fight feeling bad and I didn’t fight feeling okay. Now, I don’t fight feeling downright happy either.

My photo collage calendar is filled with Halloween memories, especially for the October-Halloween memories!

I came to terms with not knowing if I would ever return to Walt Disney World for Halloween and being okay with leaving it as a treasured memory that just belonged to Ben and me. However, last month, thanks to my friend Monica and her two amazing daughters Abby (my namesake!) and Andi, I was able to return to Walt Disney World and to Mickey’s Not So Scary Halloween party. Please click here to read about that experience. I was nervous about how I would feel being back without Ben, but I was looking forward to having a very different kind of experience with friends who are family. We did have a truly magical and, for me, a kind of spiritual experience. There were many times that I shared my memories and there were times that I took some quiet moments to pay tribute to Ben. I even took the opportunity to thank Mickey, Minnie and Buzz for giving Ben such joy during his battle with ALS when we visited Walt Disney World. There were laughs about our silly adventures, as well as tears shed for missing him and grieving the time he was cheated on this earth and we were cheated of being together. There were photos I enjoyed having with everyone else, and a few that I needed to have by myself because I had them with Ben and I needed to show myself that although things were different, I was still okay and Ben was still with me. What I learned was that it was a comfort to be able to conjure Ben and once again be a part of Walt Disney World and its most special Halloween celebration. I was part of the planning and the choices, I laughed and had fun, and saw things through the eyes of my friends, knowing that Ben was still a vital part of our trip. Although at times I felt like I was watching myself as I reacted to the experiences, I was not just a spectator, I was one of the happy partygoers. I was back in the Disney magic, singing and dancing along with “It’s a Small World,” just as I did with Ben and still having a fantastic time in honor and in memory of him and of us but also in celebration of life and the gratitude I have for such wonderful friends.

Looking back and being happy in the now!

I was not certain before I boarded the plan to Orlando, but I was ready to return. I was also well supported. Being able to look back and take that love and those memories with me allowed me to embrace the now rather than just watch it go by.

Sorry, Edna, darling, you may understand fashion, but you don’t understand grief.

Never losing sight of that I’m really not alone (and I don’t just mean those ghosty ghost buddies).

Reflections on Returning to Walt Disney World, Friendship and Getting Unstuck From Grief

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It’s taken me a while to sort through my feelings and experiences during my return a couple of weeks ago to Walt Disney World for the first time since I lost Ben to ALS. The last time Ben and I went there together was in 2014, and he passed away in 2015. My very dear college friend, Monica, and her two daughters very generously gave me the opportunity to return and to pay tribute to Ben and to my cat, Disney. While some might find it odd to include Disney with Ben, it is important to note that the way I was raised, pets are family, and Disney was there for me throughout Ben’s illness and beyond. In addition to being her loving Mommy, I became her caregiver shortly after Ben left this world because she was diagnosed with several illnesses and required much medication and attention. Losing Disney back in February was losing the one who was closest to both of us and entrenched with us in the ALS experience.

Disney loved Marie and the Marie bed that Ben got for her birthday!

Halloween 2010, shortly after Ben’s ALS diagnosis. I had to tell Marie that she was Disney’s favorite actress!

I thought about all my favorite Disney and Pixar movies and quotes and their significance to this trip. Of course, it was Walt Disney who best summed up my time, but who would have thought that I would find it on a coffee cup at the Polynesian Hotel?! He said, “I love the nostalgic myself. I hope we never lose some of the things of the past.” He also said, “We keep moving forward, opening new doors and doing new things.” This trip represented a combination of nostalgia and looking ahead and it represented a milestone in that I was able to go back and step forward.

It was nerve-wracking to gear up for the visit and I was caught between excitement and fear of the emotions. I flew on a different airline, which had me nervous because I never handle flying particularly well, but at the same time gave me a sense of relief that walking exactly the same path we took might have been too sad.

I met Monica, Abby (my namesake!) and Andi at the Magical Express bus area of the Orlando airport. I got there first and had time to think back to all the times that Ben and I eagerly awaited our buses and how, after his ALS progressed, he even enjoyed going up on the wheelchair lift, treating it like another Disney attraction. Once I was with them, I felt grounded in family. They let me recount all my memories, so they got a glimpse of our experiences, but we also had so many whimsical distractions that helped us to create new ones. I am so grateful for that.

The new memories began at a new hotel, the Polynesian Village, which was one I’d always been curious about. I have to admit that as I took the first selfie with all of us, pictured below, it felt surreal to be smiling. I was caught up in the excitement and wanting to be happy. I almost felt like I was watching myself, keenly aware of my reactions to everything. Being with people who love me and whom I love, and who wanted this to be a special trip, made it an overwhelmingly joyful experience, even when the memories were difficult.

We started at the Animal Kingdom, where I took videos of the musicians, as I know Ben would have done. I do love to look at things through his eyes. Once I saw my friends Doug and Russell from Up, I was back in the magic. Then, we saw Rafiki and Baloo. You can tell me they are actors all you want, but if you’re going to go to the Kingdom, you must buy into the whole experience. I just do it with great zest!

I quickly realized that I was going to remember my times with Ben with every step I took at Walt Disney World. At times it was jarring, but because I was able to talk about him, I was able to bring him with me into my new experiences.

I think that aside from the actual attractions, it was in the photographs that I felt tremendous emotion. Posing for the Parks’ photographers, I remembered my photos with Ben. I was so delighted to capture special moments with Monica, Abby and Andi. In some cases, where I have photos of myself with Ben, I needed to take a photo by myself. I needed to have that visual statement that I was by myself and things are so different now. However, the photos are also proof that I am okay and that I am, as Christopher Robin told Pooh, “braver than I believe” and “stronger than I seem.”

Halloween 2012.

Still loving the Halloween decorations all around the Magic Kingdom! So many wonderful memories!

I have written about times when Ben got emotional around Mickey and Minnie, or Buzz Lightyear. I remember how Goofy stayed at Ben’s side until he made him laugh, and how Mickey and Minnie hugged him so dearly when he was overcome with emotion. I still believe that although his ALS wasn’t cured, the Disney magic was at work giving us several opportunities to visit and enjoy Walt Disney World after his diagnosis. This time, I had to thank these characters for the joy and strength they gave to Ben and to me. Yes, I am well aware that they are different actors, and that they are actors. But, they are Mickey and Minnie and Buzz and they are symbolic in our relationship and his battle with ALS.

For our first evening, Andi had arranged for us to have dinner at Hollywood and Vine, a restaurant that Ben and I enjoyed because the buffet gave us lots of opportunities to find foods that he could easily chew. My big surprise was that it has become a Halloween character event, and when we arrived, Andi told me that Minnie was right inside! So were Mickey, Goofy, Donald and Daisy! I can’t describe how heartwarming it was that Andi arranged this surprise! For so many years, I had been the one to make all the arrangements and create the surprises for Ben. Monica’s arranging this trip was more than I could ever have imagined, and to be the recipient of these gifts made me feel so surrounded by love and so fortunate. Minnie Mouse seemed to have been very touched when I told her that at a certain point in the ALS progression Ben would only try to get out of his wheelchair for her and Mickey and she hugged me and signaled that I am strong and that she loves me. It didn’t take long before I was completely in tears. Minnie is one of my very favorite characters- she is like a kindred spirit to me- and to connect over my memories and my grief was very powerful. Thanking her was something I needed to do.

July 2014, Ben was overcome with emotion when he greeted Mickey and Minnie.

This time, I was overcome with emotion thanking Minnie for all the joy that she brought to us at a difficult time.

Joyful, funny, silly times! Disney magic sprinkled with pixie dust (and very special friends!)

I was dreadful at the Buzz Lightyear Space Rangers attraction. Ben would have teased me mercilessly! It was great fun to enjoy the attractions with actual children- well, teens. Ordinarily, when there were announcements about holding small children by the hand, Ben would grab my hand and laugh.  Afterwards, we went to meet Buzz for photos in exactly the place where Ben and I had met him. I showed him the very brief video of when he met Ben and made a fuss over his Buzz Halloween shirt/costume. Of course, Buzz indicated that he “remembered,” and I got choked up as I thanked him. I took my photo alone (though I am firmly convinced that Ben’s spirit accompanied me) and then got fun shots with my friends, my family.

I showed Buzz the video of him with Ben. Of course he remembered!

Just Buzz and me, but I know Ben was with us.

New memories: Abby x 2 to the left, and Andi and Monica to the right of Buzz.

Being at the Magic Kingdom is truly my happy place and being able to dance and share the magic with loved ones adds a whole new layer of joy to my treasure trove of memories. I felt Ben beside me on each of our rides through It’s a Small World- yes, there were a few! Ben always joked that after he left this earth, that he would do two things: 1. Haunt me if I ever met another man; and 2. Be a grim grinning ghost at the Haunted Mansion! I fully expected that he would join us on the doom buggy, and I found that a comfort. Outside the mansion, we paid our respects to Ben, and to Disney, and even to Tiffany, my first cat who truly loved all of our Disney plush toys.

I couldn’t help smiling at the thought that Ben is a grim grinning ghost now. Not sure how Andi felt about that!

I was a little nervous about attending Mickey’s Not So Scary Halloween Party because it was one of our most treasured events. It made me so happy that they loved the Boo To You parade because Ben loved it so much that he often listened to the music and whenever he was annoyed, he would scoff, “boo to you!” I choked up as it begun and I couldn’t help but turn to Monica and say that it just isn’t fair that Ben wasn’t there to enjoy it. ALS isn’t fair. It’s never fair when terminal illness cuts short a person’s life. The Halloween party offered a few parallel experiences, including photos with Pooh and his buddies all dressed up for Halloween. I so clearly remembered posing for that photo with Ben in his scooter. I will forever admire his positive attitude throughout his battle with ALS. He would have loved the photograph below with the animation of the ghosts.

We loved to stand here, on Main Street, and look at all the Halloween decorations.

Although I relived some of the old memories, I had so many laughs and fun times, creating so many new memories. I do miss having kids of my own, so to share a lovely relationship with my friends’ children is very important to me and something I value tremendously.  It was special fun to stay at the park with Andi until midnight, where we were able to go on the Little Mermaid attraction two times in a row! Just to see the attractions and wander the parks through the eyes of the kids is something I could not have done without Monica’s arranging this magical trip.

Halloween 2012 at Walt Disney World. We never met Rabbit (there was probably too much frolicking), but had fun with his 100 Acre Woods buddies.

Ben would not be at all surprised that this Eeyore came home with me.

I do find great peace, comfort and love in seeing signs of Ben’s presence and this trip was filled with messages that he was accompanying me. The first sign came at the Halloween party. I had been a bit disappointed that we were not going to meet Sully, because he was one of Ben’s favorite buddies and he was the first buddy we told when we got engaged at Walt Disney World one Halloween. Sully hangs out at Hollywood Studios. As we looked at the party map, I noticed that Sully was going to be at the dance party. Sure enough, I got to dance with him! Boo was also there and Ben always said I was like Boo because I followed my cats around so much, always wanting to pick them up. Disney loved it, but Tiffany hated to be held and Tinker Bell is not thrilled with it, either. In my mind, Ben had something to do with their being at the Magic Kingdom!

Halloween 2012. Ben was still able to get out of his wheelchair to greet his best buddy, Sully!

This time, Sully magically showed up at Mickey’s Not So Scary Halloween party!

Epcot will always be a special place because of how much Ben loved the freedom of riding his scooter and electric wheelchair through the World Showcase without having many attractions on which to transfer. I felt that it was perfect timing to be there on the very last night of the Illuminations fireworks show because that was a very moving experience for us. I listen to that soundtrack almost every morning- it’s beautiful. The kids went back to the hotel and Monica went with me to pay a special tribute to Ben and Disney at the UK pavilion, where Ben loved to listen to the live bands. The band wasn’t playing, but Mary Poppins was there. Later, Monica joined the kids to head to the Magic Kingdom but I spent the afternoon wandering Epcot and waiting for the final Illuminations. I visited the Boardwalk, which was our favorite hotel and where Ben loved to look out over the water. Some of the stores have changed, but I treated myself to a splurge of ice cream, as we always did, sat with my thoughts and had a little chat with Ben. I like to believe that Ben will now forever be able to watch those waters. I took a ride on the new Skyliner cars, which, sadly, are now having some problems, but which were quite fun. I took all of the photos and videos that I know Ben would have been taking, particularly when the Boardwalk Inn came into view. I met Joy from Inside Out, which was interesting because Sadness was supposed to be there but she wasn’t. I asked if she was too sad to drag herself to Epcot that day. I told Joy that I was having a day of joy and sadness, but her movie shows us that life is just like that, so it’s all good. She asked about the Tinker Bell ornament on my Magic Band and I told her that I have a cat, Tinker Bell. Joy signaled to the photographer to ask if I had pictures of Tinker Bell on my phone because she loves cats and Riley, in whose brain she lives, had a cat. So, there I was, the proud mama looking for photos of my baby girl to show to Joy! I returned to the UK pavilion just as the band arrived. I had just done a quiet little tribute to Ben and Disney when suddenly the band played the Beatles Twist and Shout and then their version of Happy Birthday. Those were the signs I needed to know that Ben was definitely with me. Twist and Shout was the first song that we ever danced to and Happy Birthday is the song that Ben called me to play every year when we were dating and then set up on his computer each year, even when he couldn’t be at his desk in the morning. We always went to Walt Disney World in October, for Halloween and my birthday, so I felt like he sent me that song. Some people don’t believe in signs, but I do, and these signs let me know that I was doing the right thing with this trip and with these tributes.

Below, a song I needed to hear from the band in the England pavilion that Ben loved so much. It definitely was a message from him!

I did purchase special light-up Farewell to Illuminations Mickey ears and I got my picture taken with the Spaceship Earth in the background. It’s always a bit lonely to do that, but it was a statement for me of how things are different now. As I waited for the photographer, a man I didn’t know came up and put his arm around me. The photographer asked if we were together and we laughed and said no, and as he moved on, he said, “but I didn’t hear you complaining!” I laughed and said he might have been my prince charming! I looked at the photographer, who was laughing hard, and said it’s all about the Disney magic. I’m hopeful that someday my (new) prince will come, despite Ben’s warning that he’ll haunt me! Maybe that guy was a sign that he’s on his way.

On our last morning, we had breakfast with Lilo, Stitch, Mickey and Pluto at the hotel. It is a lovely breakfast in a beautiful setting with Cinderella’s Castle in the background. It is a dear memory for me because although it was a schlep in his electric wheelchair from the Boardwalk Inn, Ben wanted to go because he knew how much I loved Stitch and that I had always wanted to go there. I snapped photos of Ben’s beloved Mickey shaped waffles, as he always did, and I think they tasted even better because he was such a vibrant part of the memories.

After a fun time with our Disney buddies, we headed to the Magic Kingdom. It was bittersweet to ride Pirates of the Caribbean and Peter Pan’s Flight, because they were the first that we had to leave behind because he could not transfer onto them. These were the only times I felt some pangs of guilt for my delight. I can’t find a way to reason it away, and although I was glad I went on them, if for no other reason than being proud of myself for confronting the grief, I was too keenly aware of the negative feelings attached to them and although they didn’t upset me, they don’t hold the same joy for me.

On our last day, we had an opportunity to meet Tinker Bell. I showed her pictures of my little Tinker Bell, whose little white paws she loved because she said they reminded her of the dandelions on her shoes! She asked if Tinker Bell is sassy like she is. It seemed a perfect way to end the trip, bringing all of my wonderful memories and this extraordinary gift of the present, to my current baby and hopefully, more dreams come true.

Tinker Bell loves her new little Sully, which I brought her to remind her of Ben.

This trip was an incredibly powerful experience of friendship, generosity and love. Winnie the Pooh said, “Good friends will help you until you’re unstuck.” I’m fortunate to have friends who have stayed by my side as I have come closer and closer to being unstuck. A very profound thank you to Monica, Abby and Andi for letting me see that, although bittersweet and even sad at times, I could return to Walt Disney World to embark on new, happy and laughter-filled adventures while feeling bolstered and surrounded by the love of Ben’s spirit and the presence of friends who are family. I will, once again, listen to Walt Disney’s words of wisdom and hold tight the nostalgia while moving forward and opening new doors.

Halloween 2011

On my own, but surrounded by a lot of love and guided by Walt and Mickey!