On this day, November 4, in 2005, Walt Disney Pictures released “Chicken Little.” I think it’s a cute movie that also has good messages about acceptance, believing in yourself and never giving up in fighting for what you believe in.
This quote felt like a caregiver’s cheer. As a caregiver, there were so many times that I felt that the sky was falling around me. There was, of course, Ben’s actual physical deterioration as his ALS progressed. My increasing caregiving responsibilities were stressful, as was watching Ben struggle, knowing that it wasn’t going to get better but trying to deny it. The emotional toll that took on him was devastating to witness. My giving up was not an option, because Ben needed my help! And, if he wasn’t giving up, even as ALS took away his ability to walk, use his hands, swallow and ultimately, talk, then neither was I!
To be honest, the idea that “every day is a new day” could often be scary. Every day posed the possibility of a new problem. At the same time, every day did present an opportunity for things to be okay, or stable. We hoped for that and there were many good days. Good days could be times when we had a lot of laughs, or Ben was comfortable, or I was able to transfer him easily and without pain (to either of us), or I made a tasty pureed meal in the food processor. Good days were days without frustration, resentment and sadness. Good days were days that we both felt that I was in control of all that needed to be done.
What did I do when I felt like the sky was falling? Sometimes I gave in to the emotions and cried and that did somehow leave me feeling better and calmer. At other times, I needed to take little “mind breaks.” Computer games and surfing the web often proved to be a good distraction. Watching movies, especially Disney ones, also allowed me to escape while still being present. Writing, whether in my journal, or in my book of Disney inspirations, also helped me to focus and sometimes to work out my feelings. I do find that a nice cup of tea also helps me to slow down and regroup.Emails and texts to my friends helped ease loneliness and reassured me that I had a network of support. I couldn’t go out very often, so keeping up with friends in this way allowed me to feel connected to the world. Sometimes I just sat on the sofa with Disney, my cat, while Ben watched TV in the other room. I needed space and there isn’t much in our tiny NYC apartment. And, if Ben was comfortably settled, a bubble bath was a really great retreat.
In grief, I find that this quote also resonates. The pain and loneliness can be awful and the idea of shaping a new life can seem impossible, but I never give up and indeed, after a little more than a year, I feel like I’ve cautiously stepped back into life. I certainly have my setbacks, but I know that every day is a new day, and some are better than others. I try to acknowledge every baby step I take as I heal. Indeed, it was a leap forward to go to London and celebrate my birthday last month. It has been a hugely comforting realization that Ben and all of my memories- the carefree, loving ones as well as the ALS and caregiving ones- will always be a part of me. The future is still daunting, and the present is still lonely and sad, but I have more pleasant days and feel more optimistic now.
I suggest to other caregivers that it’s very important to identify things that make you feel better when it seems that the sky is falling. A network of support is also crucial. Make a list now, before an emotional crisis, of people and places that you can turn to. Maybe some of my ideas will help you. I wish I knew about the Twitter chat support groups while Ben was still here. I find them useful now, too. If there are things that help you, please share them in the comments. For now, listen to the little chicken’s message!
Meeting Monsters Inc Sully and Mike. Ben LOVED Sully!
Halloween was the most fun holiday for Ben and me, especially when we were at Walt Disney World for Mickey’s Not-So-Scary Halloween Party. Halloween is extra special for me because Ben proposed to me at Walt Disney World on Halloween. It was very exciting and, of course, I told all of my Disney buddies! Ben never tired of teasing me about my ability to talk to all of my friends. Why wouldn’t I?!
There are so many videos and photos of our amazing times, but, of all of the fun Disney times we had, I think that a most poignant memory was the Halloween celebration we had back in July 2014. That’s right, July. This was a very special trip, because I think that Ben and I both knew that it would likely be our last visit to Walt Disney World, as Ben’s ALS was progressing more rapidly. I wanted it to be a most incredible trip with lots of surprises.
Traveling to Walt Disney World was stressful but Ben really did have an amazing attitude. I will write some of the details to give an idea of considerations that have to be made when dealing with ALS and other disabilities. I think it was a combination of realism, naivete, determination and pixie dust that enabled me to make these plans! First, we needed to bring another caregiver. I was advised by Ben’s doctors and the ALS team that I should not do this alone. Ben wasn’t happy about it, since another person did change the dynamic, but he had to relent and I had to be strong, since I was nervous about how much assistance he required. Getting to the airport was a bit complicated, since Ben was pretty much homebound at this point. I had to hire an ambulette service to get him down the stairs and safely to the airport. I contacted JetBlue, which was great each time we flew, before and after Ben’s diagnosis. They helped me to choose seats and let me know exactly what to do when we arrived at the airport. We were taken through security with relative ease and he was literally lifted and placed into his seat by a very kind and accommodating crew, one of whom revealed to me through tears that his brother had ALS. Ben was calm and in good spirits, while I was a smiling nervous wreck!
Disney’s Guest Services Department was very helpful and supportive when choosing a room, coordinating transportation to the hotel with a bus that had a wheelchair lift, and arranging for the electric wheelchair to meet us at the hotel. They even put me in touch with a local pharmacy that delivered Ben’s nutrition supplement to the hotel. It was waiting for us when we arrived! We had a room with a roll-in shower, which was such a treat for Ben. We take a lot for granted in life, don’t we?
Ben even had fun on the Magic Express wheelchair lift!
This was going to be a very different trip because so much about Ben’s physical abilities had changed. Ben wouldn’t be able to go on his favorite rides, Pirates of the Caribbean and the Haunted Mansion. Eating was also a big challenge. Because of these obstacles, I wanted to arrange surprises for Ben that would be fun and unusual. Ben knew I had surprises in store, but he didn’t know what I had planned.
Disney has a wonderful Floral and Gift Department (click here to visit the site) that offers a variety of gift packages that can be delivered to your hotel room. They had a Halloween package but it was available during the Halloween season. I called and explained our situation, making a special request for a Halloween hotel room even though it was July. Disney is about magic and dreams come true, and they did not disappoint! When we arrived at our room, outside was a banner that said “Spooktacular Halloween July 2014!” It had a pumpkin with blinking lights. Ben thought it was a promotion for Mickey’s Halloween Party, but he still got excited. When we opened the door, the room was like a little Haunted Mansion and Ben was completely shocked, thrilled and emotional. I thought that if a full day at the parks was difficult, the room would also look very cool, and indeed, it did, but Ben did great at the parks! I was the one having a hard time keeping up with his zipping around in the electric wheelchair!
Since we were bringing Ensure to the parks in case eating was a problem, I had also ordered from the Gift and Floral Department an insulated backpack with some goodies. Also, we were joined by a giant walking Buzz Lightyear balloon. Here are pictures of some of the magic.
Ben was excited just to see the banner! He had no idea what awaited him inside!
Mickey Mouse and Minnie Mouse all dressed up for Halloween in July!
Treat baskets in our room, and a projectable haunted house that shone a haunted house on our ceiling!
The candelabra in our haunted hotel room!
Our hotel room was very fun!
I learned that there was a Pirates and Pals Fireworks Cruise with a party where you could meet Captain Hook and Mr. Smee. When I found out that the boat was accessible, I had my next surprise for Ben! The day of the cruise, I gave him as a hint a little pirate coin I’d found at one of the gift shops. His first guess was that I’d arranged for him to go on Pirates of the Caribbean, which, sadly, I couldn’t do. We took the monorail (also accessible) to the Contemporary Hotel, where the party began. Ben laughed when he saw the really great pirate-themed decorations. We were given bandanas, too. One of the truly brilliant aspects of the Disney team is that they never make someone with disabilities feel uncomfortable. A cast member came and escorted us with no fuss on an accessible path to our boat. The cruise was so much fun, the fireworks looked magnificent from the water, and, as a surprise, Peter Pan was on the dock to greet us when we returned! OK, so I was more excited than some of the children! There were tears and there was joy as we listened to the “Wishes” fireworks lyrics, but watching the delight on Ben’s face is something I will never forget.
At the Pirates and Pals Fireworks Cruise Party with Captain Hook and Mr. Smee.
Ben loving the Pirates & Pals Fireworks Cruise.
Ben had not had a proper haircut in a few months, so I arranged for him to have a haircut and shave at the Main Street Barbershop. He was a little bit apprehensive, but, as I’ve said, he had such a great attitude, and he ended up having a great time. The staff accommodated his electric wheelchair and made him completely comfortable. Outside of the barbershop he met up with the Dapper Dans, the singing quartet he loved.
Ben got a kick out of getting his hair cut on Main Street, especially because it was decorated like an old fashioned barber shop.
The Dapper Dans were very cool! Ben always loved them.
We loved our usual attractions, and Ben loved the new Little Mermaid attraction, where his wheelchair could go right into the clamshell. Of course, we were happy to see our friends.
Buzz was one of Ben’s heroes, but he loved Woody and friends, too!
We visited the Wishing Well at Cinderella’s Castle, which was emotional. We also became overwhelmed when we met Mickey and Minnie at Epcot. Maybe it’s silly, but when dealing with something like ALS, you just want to believe in magic, or something, that will make things better. People sometimes ask me how I can believe in Disney magic, or that dreams come true. I just do, even when it’s difficult. After all, Ben did okay with ALS for about 4 years, and we were fortunate to be able to travel to Walt Disney World many times, even after his diagnosis. We shared a lot of love and wonderful memories that he relived daily as he looked at our many photos and videos. We even had Halloween in July! And, he left this world surrounded by music, love and even Disney. Maybe it’s a matter of perspective, but I feel the pixie dust.
At the Walt Disney World Wishing Well at Cinderella’s Castle
Firsts are always hard. The one year anniversary of Ben’s passing away. His first birthday that he wasn’t here to celebrate. My first birthday without him. Every “first” milestone has been a hurdle to overcome. The same can be said about my first solo travel jaunt to London earlier this month to celebrate my birthday. I was a very independent traveler before I met Ben, and London has always been a favorite place to go, especially because I have wonderful friends there. Since I never went there with Ben, I felt like I would not have constant distressing reminders of things we used to do together.
I had such conflicting emotions as I made my plans- I was excited yet I did feel the alone-ness. Every reservation was daunting and decision-making was so difficult. Having been someone who enjoyed traveling by myself, it bothered me to feel that way. I do, however, have amazing friends here and in England, who supported and cheered me on in my planning.
I became apprehensive about the whole trip when I felt terribly lonely on the way to the airport. The apprehension led to near regret at the first sight of someone in a wheelchair, which had me in tears because it brought back so many memories of getting Ben to and around the airport and security and then, onto the plane. I tried to stay focused on how terrific it would be to see my friends and do things I love- see theater and ballet, shop and walk around the city I love. I told myself to be proud for making the journey and acknowledging it as a milestone in dealing with my grief. I repeated my usual mantra, as Christopher Robin told Pooh, “You are braver than you believe, stronger than you seem, and smarter than you think.”
Landing in London and seeing the signature taxis was indeed exciting. Upon arrival at the hotel, the staff was very friendly and I said I was happy to be back. When they asked why I had not returned in a long time, I choked up as I said that my dad and my husband both had been ill. You just never know when the triggers of sadness will hit. I went to my room wondering if I’d made a mistake and was not ready for this trip, but was greeted by a gorgeous flower arrangement sent by my friends. It brought a huge smile to my face and reassured me that I was not alone and I am fortunate in so many ways. The staff was also very kind and kept tabs on me throughout my stay, even when they saw me in the neighborhood after their shifts. There really are great people everywhere.
I visited with my friends Penny and Jeremy the day after I arrived. It was wonderful to see them and it felt good to talk to them about Ben, and the good and bad times. It helped me see that I will always carry Ben with me as I continue to move through life. I do sometimes wonder if I dwell on the past to the point that I am not fully engaging in the present. But, I took a big leap by going away, and surely, that is a good sign that I’m doing better.
Penny and I at Whiteleaf Cross.
Jeremy and I at Whiteleaf Cross.
How fortunate I am to have friends that are like family living around London! I’ve known Penny and Jeremy’s daughters, Eleanor and Florence, since they were babies and they will always be little girls to me, but it touched my heart to see what lovely women they have become. I was able to visit Eleanor where she teaches, in a most amazing school, Christ’s Hospital. Click here if you’d like information about his historic and fascinating school. I met Florence in the heart of London, where she is living my dream of living and working in London!
Walking through London and visiting my favorite places, I found that I was looking at them through Ben’s eyes. I made mental notes of what Ben would like, and what he would say and do. I took pictures that I knew he would have taken. I have always loved the British use of language, and I know he would have chuckled as I took such delight in hearing the very well-worded explanations, directions and commentary. It was so nice not to hear constant cursing that I feel surrounds me in NYC, and I had to laugh that when I did occasionally hear it, the words were often coming from my own mouth!
Ben would have photographed every phone box, mail box and double decker box in London! So, when I saw these together, I quickly snagged the shot!
When I began planning my itinerary, I knew that at the top of my list would be a visit to the crossing at Abbey Road, made famous by The Beatles album cover. I had never done that before, but I know Ben would have loved it and I wanted to go in his honor. As I approached the crossing, a purple double decker bus also approached. Purple was our favorite color, and I had never seen a purple double decker bus before in England (and I only saw one other one on my last day in London), so I truly believe that it was a sign that Ben was with me. I understand that not everyone agrees with that thinking, but it makes sense and is comforting to me.
The purple bus that approached the crossing at Abbey Road as I arrived. I believe it was a sign!
On the rare occasion like this, when I did want a picture of myself in the crossing, it is especially lousy, and almost embarrassing, to be alone, but I was grateful that some nice students were willing to snap my picture.
The famous crossing! It really was a fun thing to do and extra fun because Ben would have loved it.
I found the Abbey Road Café (which is not on Abbey Road- go figure), where I saw that they had a Halloween display. Ben would have loved the combination of Beatles and Halloween things and would have taken photos, so I did, too.
While sad not to have him there to enjoy it, I did feel that I was honoring him with every step I took. I needed to do that. Knowing how much fun it would have been for Ben, and that I’d gone there just for him, felt good and right.
Of course, I had to visit the Disney Stores in London. I’d done my research, and I knew there were 3 in central London. I visited the first one in Covent Garden on my first day of wandering around. The emotions are always conflicting: excitement about being there knowing that Ben would also be so excited, yet overwhelming sadness and loneliness because, in fact, he was not there. At Harrod’s, I was so happy to find an exclusive Mickey Mouse toy. I walked proudly around the store hugging it and one of the sweet saleswomen chatted with me about this Disney Store within the landmark Harrod’s. I guess my enthusiasm was apparent, because before I left with my new Mickey and an Eeyore who just had to come home with me, she handed me a little card that said, “Have a Magical Day” and “My First Visit to Harrod’s Disney Store.” I could vividly picture Ben laughing about it the way he did when I waited on line for stickers with all the little kids at Walt Disney World. I often felt on the brink of tears, sometimes giving in to them and at other times finding a way to smile at the thought of how he would react. As I write this, I wonder if including thoughts of him in everything I did was a way of allowing myself to be happy on this journey.
Exclusive Oxford Street Disney Store Mickey and Minnie. Quite regal, don’t you think?
Exclusive Harrod’s Mickey Mouse! So adorable! I love Eeyore, and this little guy asked to come home with me. Eeyore is holding the card I was given marking my first visit to that Disney Store!
I went to the theater and to the ballet almost every night, which is one of my favorite things about London. These are things that Ben enjoyed but that are my passion. I was even able to get a ticket to both parts of the very popular and sold out “Harry Potter and the Cursed Child,” which I consider an intervention by my dad and Ben! And yes, also my friend Ed, who kept telling me to stop by the box office. The show was absolutely incredible.
Ben loved history and I know that he would have enjoyed tremendously the sights and sounds of this London. It makes me sad that we never got to visit this enchanting city together. I missed Ben’s company strolling the streets and neighborhoods of London even though I did feel like he was with me. I missed sharing favorite places with him. I wish he could have spent time with and gotten to know the friends he knew were so important to me.
When I felt lonely, I did text and email my friends, who were totally amazing and supportive, as they have been throughout my entire experience with Ben and ALS and now, with grief. I have not completely given into happiness but I am now finally coming out the other side of the caregiving and loss. I have come to dislike the expression “moving on” because I feel like it implies leaving something behind. I’m not leaving Ben behind. I do “keep going” because I’m still here and that does come with some guilt. But, I hold in my heart who he was, and who we were together. Those memories and feelings came with me to London. They allowed me to gain a new perspective on the London that I love and to have a great time despite the emotional roller coaster. They will help to shape this new phase of my life. That thought actually gives me some peace and comfort and lets me look toward the future with growing confidence and optimism.
The Peter Pan Statue in Kensington Palace Gardens always brings a feeling of whimsy and magic. This time, it also brought a sense of hope.
Today, October 27, is my birthday. My second birthday without Ben. I guess that I often measure time that way now. Last year, I preferred not to deal with the day, staying home and basically throwing the quilt over my head. To be fair to myself, it was merely 2 months after he died. It’s still emotional to think of celebrating events without him. But, this year I decided to take myself to London as a birthday treat. It was another milestone to travel again, by myself, and to make it easier I went to a favorite place where favorite friends live, too. Also, a place I’ve gone many times without Ben. It might seem strange, but I am proud of myself. I spent a beautiful and reflective week there and I will write about that in another post soon. Now I’m back, and facing conflicting feelings- that childish delight about a birthday mixed with the sadness of not having Ben or my mom, dad and grandma- the people I was closest to- with me, and guilt about continuing to navigate life when they aren’t here and conveying in any way that they are even a little bit forgotten.
I’ve thought a lot about the wonderful birthdays I had with Ben. Several of them were spent at Walt Disney World during Mickey’s Not-So-Scary Halloween Party and the Epcot Food and Wine Festival. I am so lucky to have had that kind of love and those delightfully whimsical and magical experiences. As I’ve said before, Ben let his inner child shine and he completely indulged mine. Well, my inner child isn’t so inner- it’s front and center of who I am!
Here are just some of my favorite Walt Disney World birthday memories with Ben:
The time I asked Mickey how old I looked and he held his hand up and I asked if he thought I looked 5. He shook his head and held his hand up again and I asked if he meant 50. This went on for a while until he held up one finger at a time and I realized that he only had 4 fingers. He looked up at the ceiling and held his hand to his forehead and when I looked over at Ben, he and the PhotoPass photographer were laughing hysterically. Ben couldn’t believe that I didn’t know my Disney buddies had 4 fingers and he said the photographer was laughing so hard that she couldn’t take a picture. From that point on, Ben and I only “high four-ed” each other.
Mickey has Four Fingers!
The birthday holiday we took there when Ben proposed to me. The actual proposal was on Halloween because he knew I would love that. I did.
Mickey congratulated us on our engagement!
Birthday hugs from Pooh, Eeyore, Tigger and Piglet at the Crystal Palace, because I had to have birthday lunch with my friends from the 100 Acre Woods. I was as gleeful as a 5-year-old when the waiters sang “Happy Birthday” to me. Ben surprised me with a cake once and Pooh kissed my hand. I’ve kept all the confetti and the birthday cards.
The little girl at the Akershus Restaurant whom I noticed was intently watching Ben and me as we struggled a bit to get him into a chair and then as I cut his food and helped him to eat. When she saw the waiter bring me a little cake with a candle and sing happy birthday to me, she came over and wished me a happy birthday and gave me a hug. Kids have such intuition, and her mom and I both had tears in our eyes.
Dancing with Stitch and Goofy at the Halloween party while Ben sat in his scooter, laughed at me (with love) and videotaped it. As if anyone who knows me would be shocked!!
Getting extra candy when we went trick-or-treating at Mickey’s Halloween Party because I announced that it was my birthday, probably more excitedly than most of the little kids. Between Ben in the electric wheelchair and my birthday, we did very well collecting candy!
Having so much fun tasting the foods at the various pavilions during the Food & Wine Festival. Even though he needed help with food, and he couldn’t eat everything he wanted, Ben loved to be at Epcot and he didn’t let himself lament what he couldn’t do or eat. His attitude was incredible.
I am grateful to always have those very sweet memories, and so many more. I grieve for the birthdays I won’t have with Ben, and also for the birthdays he won’t have. But, I’ve felt his presence over the past year and I know that he is with me, as are my mom, dad and grandma. People say that Ben would want me to be happy and to celebrate. I’m sure that’s true, but it still doesn’t feel quite right.
Tonight is parent teacher conference night at the school where I teach, which is kind of a good excuse to just tiptoe around my birthday. I do remember the one other time that my birthday fell on parent teacher conference night. Ben and I had decided that we would celebrate over the weekend instead and it was no big deal. He picked me up at school, as he always did after evening events, and when we got to my apartment, I was delightfully surprised to see that he had decorated with balloons, flowers, a cake and some of my Disney toys all around the decorations. He had done all of this after work and before meeting me. That was Ben-always romantic.
Despite all of the very difficult memories of Ben with ALS and in the hospital and hospice, I am glad to be able to recall with love and smiles, and yes, also tears, all of the wonderful times before our lives changed. Because those times tell the story of who we really were together. Remembering that is indeed a most special birthday gift.
In Disney history, The Jungle Book was released on this day in 1967 (Thank you, DizneyCoastToCoast.com). This is a tale of Mowgli, a man-cub who is raised in the jungle, nurtured by some animals and hated by the tiger, Shere Khan, who hates man. It is also a sweet tale of Mowgli’s relationship with Bagheera, who teaches and watches over him, and in that way it represents a wonderful tale of caregiving. Bagheera has it all: patience, ability to listen and reason, understanding of Mowgli as a man-cub within the jungle environment, willingness to let Mowgli test himself, reliability, intelligence, common sense and loyalty. Who could ask for more in a caregiver? Baloo is a great buddy, and they have a deep friendship and love, but Balloo also needs the guidance of Bagheera. I don’t know that I would run to Baloo for help in a crisis, though he might be great comic relief! But, Baloo is protective of Mowgli and he has a good message. As caregivers, you don’t often get to “forget about your worries and your strife” and life seems much more complicated than “the bare necessities.” And yet, it is so important to take the time to cherish and remember the simple and wonderful aspects of our relationships and life prior to caregiving. Try to focus on those things when the stress becomes severe and you start to forget who you were before you were in a caregiving relationship. I wish I had done that when I was Ben’s caregiver. I think it would have helped me to deal with the frustration that I have only just begun to understand in grief.
As for me, I think I was a combination of Bagheera and Baloo- a dedicated caregiver, acquiring skills on the job, with a sense of humor and incredible klutziness! How about you? What do you consider the important skills of caregiving? Are you more Bagheera or Baloo?