The following piece first appeared on the ALS Worldwide web site. Please click here for more information about this wonderful organization. I believe that those of us who have experiences with ALS need to share our perspectives to broaden awareness and promote involvement in helping to cure and manage the disease.
Ben Carrasquillo was my husband, and since we shared a tremendous love of Disney, I think it’s fair to say that he was sometimes my prince charming and sometimes he was my monster. He will always beloved, as Buzz Lightyear says, “to infinity and beyond.” Ben died on August 26, 2015 after bravely fighting a six-year battle with ALS. Memories do give me great comfort, despite the tears they bring.
So many of my memories with Ben are from Walt Disney World (WDW). Our first visit there was Halloween 2001. It was our favorite holiday, celebrated the not-so-scary Mickey Mouse way, and we had so much fun, especially when trick-or-treating and trading candy like the little kids.
We went back many times and he even proposed to me on Halloween at WDW. Despite scooters, electric wheelchairs and assorted other challenges, Ben let his inner child shine and he indulged mine too. I loved that about him. The Disney magic gets you, and somehow we really did believe that Mickey could help. Maybe he did, because Ben did pretty well with the disease for more than four years. We were able to return four times after his diagnosis. Those visits really became about reliving and making memories that we could always hold in our hearts.
In July 2014, I took Ben to WDW for one last visit. I wanted to plan a trip that neither of us would ever forget. It had its challenges – we had to bring another caregiver with us – but Ben was determined to have an incredible time, and he did. We did some new things, like a nighttime cruise where we could watch fireworks and meet characters. I also worked with the fantastic WDW Floral and Gifts team to surprise him by having our hotel room decorated for Halloween. His face lit up when we arrived outside of our room and there was a big banner with a pumpkin and blinking lights. He was completely blown away when I opened the door – it was like entering the Haunted Mansion. We kept all of the toys and decorations, and I brought them to his room in the hospital to recall those good times.
Although I cannot deny that there are tears for the ALS struggles and for the times we won’t have anymore, I am so thankful to be able to remember him smiling and laughing. I love the simple memories: Ben playing air guitar while the band played in the England pavilion at EPCOT, his trying on character hats and choosing t-shirts in the souvenir shops, our holding hands as we watched the fireworks displays, and his enjoying the freedom of getting around with the electric wheelchair.
Though some people look at the pictures and see how he became very thin with very swollen feet, and that he was wheelchair-bound, I see and remember the joy on his face.
“Have courage and be kind” is one of those wonderfully memorable movie quotes to live by that is so simple yet so profound. In the 2015 action version of the Disney film, Cinderella receives this advice from her dying mother.
My husband, Ben, was truly courageous in how he handled his ALS throughout his six-year battle. He pushed himself to keep doing things like walking, using his computer and eating until he absolutely could not do them anymore. It helped him emotionally and, I believe, physically, too. I was his hands at times, and his mouth when his speech became impaired. He maintained a good sense of humor, especially when I got creative with the food processor to make meals for him when chewing and swallowing were difficult.
People also called me courageous and it never resonated with me. I didn’t have to deal with that disease and dying. But, I’m finally realizing that as caregivers, we are, indeed, courageous in dealing with the many changes in our lives and in the lives of our loved ones, and in helping them deal with these changes. We compassionately provide care. We provide comfort and cheer when they seem out of reach and hard to feel. We have conversations that are so difficult about things we wished we would never have had to consider. In my case, I had to face a future that would not include Ben. But, so importantly, we need to be kind in the midst of these very stressful and emotional situations. It may seem obvious, but it isn’t always easy.
From our own perspectives, Ben and I were both overwhelmed by the amount of help he required, the way his world was shrinking and how our lives were changing forever. Our relationship was shifting from husband and wife to patient and caregiver, and that did not come easily. We didn’t always handle it graciously. Our feelings got hurt, our patience was tried, our moods sometimes were sad and depressed. There were times when I wondered what happened to my kind and loving Ben. To be fair, I’m sure he felt the same way about me. Sometimes we would try to talk it through, and sometimes it was just too difficult. Something would bring us to a loving center–and it was usually something simple, yet kind–a smile, a thank you, or when he couldn’t speak any longer, a long blink, which was our sign for a kiss.
I still have to remind myself that ALS affected Ben in so many ways and that underneath the difficult behavior was my real Ben and his real Abby. The rough times often made me question whether I was a good enough caregiver, and that has stayed with me. I got angry that he did not express appreciation for and was very critical of my caregiving at times, but then got angry at myself for thinking that my feelings were important relative to his needs. Then, I questioned if I deserved any appreciation because maybe I was not doing a great job. I have been reminded frequently to be kinder to myself. Maybe my courage is now found in facing the memories with love but also with honesty.
In addition to the dynamics of our relationship, there were the times we had to deal with various professionals regarding his care. These were not necessarily medical professionals. They were often administrators who advised on health insurance and financial paperwork, or a variety of social and other services. There were so many questions, such confusion, and overriding fear about his future. We both had to courageously persist to ensure good care and financially sound advice. Some people were kind and helpful, and others were not. My dad taught me long ago that you get more with honey than with vinegar, and kindness did come in handy, even in keeping me calmer, though it did not necessarily lead to better information. That was a constant struggle. But, when things are not going very well, and you are tired and scared, and you feel like you repeated yourself too many times and are not getting any useful help, being kind does take a lot of effort!
Maybe it seems odd to say that at times I had to remind myself to be kind. After all, I like to think of myself, as I think many people do, as a kind woman. But, when you’re not at your best, physically and/or emotionally, kindness is not always the first quality that comes to the surface. I do know that with Ben and me, when we stopped to remember the love, especially when we were frustrated to tears, the kindness did invariably come through in the caring. And, it made things better.
Cinderella’s mom gave her very good advice! I call that kind of inspiration pixie dust for caregivers (and for everyone else, too). Ben and I loved all things Disney, and as a caregiver and in grief, I found much comfort in quotes like this one. And, by the way, I thought this was a beautiful remake of the animated version.
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!
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.