On June 19, 2002, Lilo and Stich (Walt Disney Pictures) was released. But, today is Experiment 626 Day! I have loved Stitch since I saw that film. When Ben and I went to Walt Disney World and I had read that Stitch could be found at the Magic Kingdom, I was on a mission to find him. Ben was very patient! In honor of the film and my buddy Stitch, here are some photos from our visits to Walt Disney World over the years. Ben liked taking pictures of me with Stitch because he was my good buddy and Ben got a kick out of that. I look at those photos and even though Ben was the photographer, in my mind and in my memories, he is so present in those moments and I can vividly see him laughing. I am so grateful for these memories.
Halloween with my buddy in 2010. Ben could still take photos at this point, which makes this picture especially sentimental.
I think the funniest memory I have is from our 2012 trip. Walt Disney World has many and great accessible restrooms, which made life much easier for Ben. I would get Ben situated and wait outside because he couldn’t walk to lock the door. Also, I could hear him if he needed assistance. One day, while I was waiting for Ben, Stitch walked by and I yelled hello to him. OK, yelled a lot, with much waving. Moments later, Ben called to me. As I helped him into his scooter, he couldn’t stop laughing, imitating my calling Stitch and saying that he started wondering how he was going to get himself out of the bathroom because he knew Stitch was one of my favorite friends and he thought I might abandon him! I did not! And, I’m not telling if I thought about it!
I love this little guy!
I hunted him down at the Animal Kingdom in 2007!
On our last visit in July 2014, Ben knew that one of the things I had always wanted to do was have breakfast at the Polynesian Hotel with Lilo and Stitch. I had not mentioned it while planning this visit because it was a long commute from our own hotel and I didn’t want to tire Ben. Even in an electric wheelchair, transferring and navigating was exhausting to him. But, Ben wanted us to have that experience. I think Ben wanted to laugh at me gushing at Stitch, which, of course, I did! Stitch was his adorable self, as was Lilo. They were very attentive and considerate of Ben and his inability to get out of his seat. It was an incredible time that I will never forget, particularly wonderful because it was a brand new memory, as opposed to memories we were trying to recreate to almost try to turn back time to the days before ALS. Also, because it meant so much to Ben to do this for me, at a time when I was doing so much for him. I will never forget the magical connection that Ben and I felt when we were at Walt Disney World and the way that Stitch and our many Disney friends helped us to transcend the realities of ALS.
July 2014, Breakfast at the Polynesian Hotel.
Stitch gave Ben some extra love!
I am equally grateful that I had an opportunity to create new memories with my buddy Stitch, when I returned to Walt Disney World in 2019. It was a wonderful time with Monica, Snappy and Andi, and an important milestone and lesson that I can return to this place that is such an important part of Ben’s and my story, keep him in my heart and even feel his presence, but step forward to live, love and laugh.
When I think of Goofy, I can’t help but remember all of the fun times that Ben and I had with him. Of course, he’s always a lot of fun- he’s Goofy! But, after Ben’s ALS diagnosis, we learned that there is a whole lot more to his Disney magic than silliness. Goofy was a big dose of comfort to Ben during our last visit to Walt Disney World.
Meeting our Disney buddies was always fun, especially for me, but after Ben’s ALS diagnosis, seeing them, especially Mickey Mouse, became very emotional. Although Ben traveled around the parks in a scooter and then an electric wheelchair, while he still had strength in his legs, he stood up for photos with Mickey, Minnie, Pluto, Goofy and Buzz Lightyear. As his legs weakened, he still tried to stand for Mickey and Minnie. A couple of times, Mickey even helped me to help Ben out of the chair and he escorted Ben to the photo spot. During our last trip, in 2014, when Ben would not stand at all, I knew he had truly weakened. Living with him, you might think that it would be more obvious to me that he had deteriorated, and of course you would be correct. However, Ben admitting that he could not stand to meet Mickey was symbolic of his surrendering to ALS and that our life was never going to be the same. I think that Ben was overwhelmed and his tears were a kind of rare plea for help. For magic. It was an overwhelmingly sad and emotional meet and greet, with Ben and me in tears. Mickey had hugs for both of us and I asked him for some magic. With a diagnosis like ALS, you just want to believe in that magic.
It was actually Goofy who picked up our emotional pieces. He saw me trying to comfort Ben and he knelt down next to Ben, being his Goofy self, and soon enough, Ben was laughing. He hugged Ben, he danced around, and simply didn’t stop “goofing around” until Ben was back in the magic. Goofy knew just what to do and there was nothing Goofy about that! That’s Disney magic.
Thank you and Happy Birthday, Goofy! You are 90 years young, and a forever friend.
Today is Mother’s Day. My grandmother believed that every day should be Mother’s Day. The truth is that when my mom was alive, every day WAS Mother’s Day. We were so close that we did not need an actual holiday to celebrate that fact. After I lost her, and then my grandma, I can’t say that this holiday was like other milestones in terms of evoking debilitating sadness. There was a feeling of not belonging, the sting of realizing that I didn’t have their close and unconditional love anymore and the knowledge that my celebrations with them will have to live in my memories. I spent the day at the theater, which is something I enjoyed with my mom, but something that always brings me joy and peace. Living in a house with Grandma, in some ways I grew up with two mothers, and I honor both of them today.
Grandma doing my hair. She crocheted my dress. She was very talented! I get my creative streak from her.
I think about the importance of mothers in Disney films. In many of the animated films, mothers are not present, having died at some point in the childhood of our favorite characters. I have been moved by more recent live action Disney films, where adults and children show emotions and vulnerability as they deal with loss and grief. The films show us that it is okay to be sad and help us to see that people we love and lose stay close in our hearts. This touches me deeply, and it is such an important message for children who are grieving. I previously shared this clip from the live action Cinderella, where Cinderella’s father advises her that they must always cherish their home because her mom was the heart of it, and they must honor her. Cinderella was my first favorite princess and she remains dear to my heart. I especially love that in the live action film from 2012, we meet Cinderella’s mother, who imparts the important advice, “have courage and be kind.” But we see how Cinderella and her father work through their grief and how Cinderella must then cope with the loss of her father. I keenly relate to how she acknowledges the ways in which she her parents with her and honors them in her actions. The way that she chooses her mother’s dress and asks her Fairy Godmother to keep the butterflies because of her mother validate my own gestures. They are also good ideas to share with children who are grieving.
In Mary Poppins Returns, Michael Banks (yes, all grown up and with his own children) must cope with the loss of his wife and help his children. He lets them know that their mother lives in their hearts and memories. He explains, “Your mother’s not gone. She’s in your smile, and your walk, John, and Annabel’s eyes. She’ll always be with us wherever we go.”
I love when people tell me that they see my mom and dad in me. To this day, I have a hard time when I see that restaurants and shops that I visited with my mom or Ben have closed. It feels like I have lost tangible evidence of our memories, taking them further and further away. I sometimes need to remind myself that I carry all of those memories and the relationships within them in my heart, and by sharing them, I pass them along.
Mary Poppins sings a wonderful song, The Place Where Lost Things Go, in which she suggests:
Maybe all you’re missing lives inside of you So when you need her touch and loving gaze Gone but not forgotten is the perfect phrase Smiling from a star that she makes glow Trust she’s always there Watching as you grow Find her in the place where the lost things go.
(Composer: Marc Shaiman; Lyrics: Scott Wittman)
As time has passed, I think mostly of the wonderful memories of my mom and Grandma and our time together. I cherish my memories to keep my mom’s and grandma’s spirits alive and honor them. So much who I am and what I do reminds me of them. I get my Peter Pan-like inner child spirit and love of Disney from my mom. You won’t be surprised that one of my favorite memories is when my mom called me from Walt Disney World exclaiming, “Abby, I met Mickey!” My mom was the only truly selfless person I have ever known and I hope that in some small way I have followed her example. Every time I bake, I feel Grandma with me, and she is a part of all my creative and artistic endeavors, as well as my fashion choices. I believe natural caregiving skills, which even extend to my students, were instilled by both of them.
Now, I am a devoted mom to my cat, Tinker Bell, as I was to Disney and Tiffany. My mom- well, my whole family- loved our pets, so their influence was present even as I cared for Disney and Tiffany as they coped with several illnesses. Tinker Bell. Today, as on most days, she is curled up next to me, napping and then waking up to chat and, I imagine, say “Happy Mother’s Day!” With some coaxing, she let me hug her and take a selfie as her gift to me.
I do know that my mom and grandma are always with me. There is not a day that I don’t think of my them and I so frequently speak of them that sometimes people are surprised that they have been gone for more than 25 years. I am proud to honor them on Mother’s Day, though in truth, I celebrate, treasure and miss them always.
It has been a couple of months since I have written a blog post. There has been much going on in my life and through my mind, but I could not focus on what it is that I really wanted to express about my recent experiences. Then, I watched Encanto and heard the wildly popular “We Don’t Talk About Bruno.” For the past several months I have had to channel my inner “Brave” Merida to manage my health care and advocate for myself amidst medical issues and treatment. I cannot escape the thought that after being there for Ben and Daddy, I now have to be my own caregiver and advocate. I do not have in my life the person I was for them, and it leaves me scared, sad, frustrated and almost feeling betrayed. I believe that this is a “Bruno” of many caregivers.
When my dad and Ben were ill, there was not a doctor’s appointment or procedure where I was not present. It was not just because I was technically their caregiver. I wanted to be there. I anticipated needs, ran errands, ordered supplies, organized schedules, made phone calls and sometimes, I was just the calming and reliable presence or supplier of cheer and fun surprises. I knew the questions they wanted to ask, and I took notes to remember the answers. It was my responsibility and, in many ways-particularly as I reflect on caregiving, my honor.
Last summer, I found myself facing breast cancer. I had scans and re-scans, genetic testing, and consultations. It was found very, very early, and it was what my doctor called the world’s smallest tumor. I was fortunate. I AM fortunate. But, it was determined that I needed to have surgery that would be followed by radiation and then medication. These are all daunting things, and I am squeamish and nervous at the mere anticipation of the potential of pain, not to mention the scenarios conjured by the “C” word. I was on my own at my appointments, taking my own notes, making my own decisions based on trusted advice of my medical team. COVID protocols sometimes required this, but the aloneness was real. The experience sent me spiraling downward to all the memories of being there for my dad and Ben. When Simba missed the guidance of Mufasa, he said, “You said you’d always be there, but you’re not.” But, I was there for them. I felt guilty to even have that thought but it did hover in my mind. Like Bruno, I didn’t talk about it.
I longed for that steady and reliable presence that I was for Ben and Daddy. I do not have that comforting person at home that I can confide in, who will listen to me and pamper me, and remind me of the doctor’s advice. Now, it is up to me to determine what I should manage on my own and when to ask for help. I have to be very specific with doctors about what I can and cannot do independently. At least, living in NYC makes things easy- everything can be delivered, and all stores are nearby! I have wonderful friends whom I can always count on and who have stepped in at my request. I have friends who check in with me regularly with good cheer and concern. I appreciate it beyond words. However, whereas I was the person who spoke up for Ben and my dad, now I must speak up for myself. My mantra is one of my favorite quotes, said by Christopher Robin to Winnie the Pooh: “You are braver than you believe, stronger than you seem and smarter than you think.”My internal conversations can betray this. I am working on it.
As my own caregiver, in addition to my physical health, I must emotionally protect myself in the way that I protected Ben and Daddy. My first decision in this regard was to be very measured about telling people about this medical challenge. It was not that I was in denial; I just did not want to put it out there. Being private in this way is contrary to my nature. I am generally a heart on my sleeve kind of person, maybe too much so. However, in this case, I did not want to share information about my health with a large group. There would be no postings on social media. I have shared my experiences with a very small group of friends, slowly opening up as I feel comfortable. Everyone in my select group has been genuinely kind, compassionate and helpful and I have tried not to be a bother with my worries. I know a lot of lovely people and I know that they, too, would have been very caring, but I was compelled to limit my group to limit discussion, so that my medical issue was not all that I was. Also, I did not want many questions or unsolicited advice and anecdotes because I knew that it would make me unnecessarily anxious. I did not need to see hearts and other assorted emojis and did not need to feed anyone’s idle curiosity. Some people would enjoy the drama and want details, making public but meaningless exclamations of concern, mostly to make a display to label themselves empaths, and, ultimately, tell me what worrying about me did to them. This would only heighten my level of stress. I did not want to be surrounded by any negative vibes while I was trying so hard to be positive. I did and do not want to cause hurt feelings, but this was about me and what I felt would be helpful to me. A large reason that I have waited to write this post is because I wanted my surgery and radiation treatments to be behind me. I know that people do make these journeys public, but we all process and manage our lives in our own way. This is as public as I am going to be.
I took a leave of absence from work before my surgery because it was after the holiday break, when there was a terrible COVID surge in schools that was poorly managed. My doctors and I agreed that if I were to contract COVID it would delay my surgery and treatment and, in the face of cancer, this was not a fate that I was willing to tempt. I have stayed on leave for my radiation treatment and mind and body healing. I remember how I did not even question time off or salary lost when my dad went into the hospital and then into hospice. I stopped keeping track of days I took off from work to care for Ben. However, with my own care, I have been preoccupied with whether taking time was the right thing to do and how it would impact me financially. I have had to sternly remind myself that I am caring for myself now and these are decisions that represent advocating for my own physical and mental health. It was so much easier to do for Ben and my dad.
I am relieved and thrilled to report that surgery successfully removed all the bad stuff. My treatment plan continued with four weeks of daily radiation. I went by myself to each appointment, happy to have had the energy almost every day to walk to the hospital. I began each walk with my “Ben Playlist” of songs that were important to Ben and me for various reasons. Listening to this music is a comforting and steadying ritual. In a way, it was fine to be alone, because if I had brought anyone they would have had to just sit and wait for me. I know that I would have accompanied Ben and my dad. But, we don’t talk about Bruno.
I was most comfortable being a cheerleader for Ben and Daddy when I was their caregiver. Now, I am my own cheerleader and I figure out my own self-care. I learned in the days of caring for them that self-care could even be a quiet cup of tea, so I am mindful of identifying all little things that offer me distraction, peace and joy. Although I enjoy reading and writing, I have found that I suffer the same lack of energy to focus that I had when I was a caregiver for Ben and Daddy. I had trouble organizing my thoughts for blogging. This blog post has even taken much longer to write than usual. I have had difficulty reading, though I have gotten through a couple of books. Although I am excited to be on the third draft of my book that is based on this blog, it has been hard for me to concentrate on its progress. I did make my Valentine cards and I recently baked cookies, two things that I consider self-care hobbies. And, as a reward for tackling radiation, I treated myself to a couple of Broadway matinees. However, just as I did during my caregiving days, I have spent too much time mindlessly staring at my computer or television screen thinking about what I want to be doing and lamenting that I was achieving little. Maybe it is my mind’s way of coping with anxiety. Maybe it is my body’s way of doing what it needs to despite my best intentions. But, as I often questioned myself as their caregiver, I frequently wondered if I was doing a good job of caring for myself.
I was fortunate to tolerate the radiation treatments well and without much fatigue. The hospital was only blocks from Central Park, and I pushed myself to go there every day because I knew it would be worth the trek. I find peace and joy spending time in the park, feeding the squirrels, admiring the flowers and scenery, and taking photographs. I go to the same location every day and I seem to be recognized by a group of cute little squirrels who even jump up on the bench with me to have some nuts and hang out. A few have become comfortable enough with me to even try to climb on my lap if I am not fast enough with the nuts! I forget my worries and find complete happiness in being with them. I have written in prior posts about my interactions with cardinals and the serenity they bring (click here for that post) because I believe with all my heart that they let me know that I am watched over. Sure enough, each of the days that I went to the park during my treatments, cardinals made a point of finding me, even cutting me off on my path so that I would see them. Though generally terrified of birds, even the blue jays, with whom I have had actual arguments when they steal from the squirrels, have begun to gently perch themselves right next to me and we have developed an understanding. A small group of sparrows copies the squirrels and comes up on the bench or gently stays at my feet and I bring seeds for them, too. I am still afraid of the big groups of sparrows that converge, and I flee the scene, but I have a little group of buddies that makes me smile. For the record, I do not have a single good word to say about the pigeons. Not one. I sometimes chuckle at this Disney-like world that I feel like I enter in the park. I picture the scene from Enchanted when Giselle summons the animals to help her (minus the pigeons!). I am grateful to have these relationships with animals. Importantly, I feel grateful for this time to process, reflect, and heal.
The cherry blossoms in Central Park are magnificent!
Throughout this whole I experience, I have had wonderful medical care. My surgeon and her nursing team are amazing. I also have an outstanding and compassionate radiation and oncology team that has been so encouraging and supportive of my walks in the park and feeding my little buddies. They are delighted that I have the energy to enjoy that time. Still, I am on my own at my appointments, sharing my concerns, my tears, and my questions. I spent the four weeks spent in radiation treatment trying not to worry too much about the future. After all, they keep telling me that I do not have cancer. That fact has been difficult to reconcile since undergoing radiation treatments made me feel as if I do. Also, I will have to take a medication that I am not pleased about. Unfortunately, my mind wanders beyond logic. On my last day of radiation, just a couple of days ago, the team told me how well I did, assuring me with words and hugs that I really am fine, I am a survivor. I rang the big bell and I even got a diploma attesting to my courage! I shared my achievement in a bunch of text messages and with my buddies in the park and even rode the carousel- by myself, lonely but proud and wanting to celebrate.
My diploma after radiation.
When I have conveyed my medical status, people were often surprised because of what they describe as my joyful demeanor. Despite the medical issues which will lurk in the back of my mind from this point forward, I am thankful to know what helps me to feel better. I do not think that I was as able to do this when I was the caregiver for Ben and Daddy. Yes, if I became ill, or even when I broke my shoulder, I had to tend to myself. However, that was background, a distraction from those who genuinely needed care and support. When you are a caregiver, Bruno is talking about your own need for care and support. Now, as my own caregiver, I have to do it all. Sometimes, I feel overwhelmed and sad. I recall all my caregiving memories. People tell me that I have been brave, but I do not feel it. I have been fortunate. My cancer was small, found early, and removed. Others do not have it that easy. I saw that every day in the radiation oncology department. My doctors keep reminding me that even though I may feel nervous, particularly when I have new tests in a few months, I am fine. So, yay me! Still, I do not feel triumphant.
Generally, I do not identify with being brave like Merida, though archery was one of the few things that I enjoyed at camp. Frankly, I see myself as more of a Cinderella- glass slippers, pretty clothes, and talking to animals. Then again, Cinderella did stand up to her evil stepmother and stepsisters. AND she got the prince! That will have to be another chapter. For now, I have talked about my Bruno. Perhaps that honesty is my real bravery.
One of my little buddies hanging out on the bench with me.One of my favorite pictures.One of the cardinals that has visited with me.The Carousel in Central Park is a fun treat.
Today is Ben’s birthday. Just one more lousy milestone date in February. I had no idea how I would feel today so I had no plan.
I woke up and greeted my laptop wallpaper- a picture of Ben- with loving birthday greetings. Tinker Bell and I watched the birthday video that I made a few years ago to honor Ben’s birthday. I still miss his playing the song for me on my birthday, but I like listening to it on his. Another day of memories. At this point, I am just resigned to it. At least this morning I’m thinking of the good memories and not just about the times of ALS and illness.
I decided to go to the Metropolitan Museum of Art, where there is a Walt Disney exhibition. Ben and I loved to go to the Met. He had not spent time there until we began dating, and I enjoyed his reactions to areas and objects that I loved, as well as discovering new things with him. I am an art lover and Ben loved history, so it was fun to see things through his eyes.
I was feeling proud of myself for summoning the energy and motivation to go to the Museum on this day. In my mind, it was growth that I did not end up sitting on the sofa all day, exhausting myself wondering what to do and ultimately waiting until it was too late to do anything but feel down. It showed that I was finding ways to honor Ben and our relationship, but also living in the present. Unfortunately, I did not consider that today is President’s Day AND the beginning of a vacation week for NYC public schools. The lines were crazy. I was told it was at least a 90-minute wait for the exhibition. In the midst of my medical treatments, my health is fragile now and I did not want to compromise my safety, so I left. I am a member of the Met, so I will return, but it was a disappointment on an already sad day. I found myself pondering if it just poor planning or if it was a message that today is not the day to look ahead, even if motivated by Ben and our memories? Thoughts like these keep me on the sofa, immobile and lost.
Returning home to the cocoon of my memories is also retreating to the way I have previously coped with my grief. My go-to on days like this is to watch Ben’s favorite films, including Monsters Inc., Toy Story and Mulan. I do like these moments of communing with my memories, even if they bring tears.
Today, as I watched Monsters Inc. I was most moved by the scene where Mike gets Sully that one missing piece that allows him to open the door and reunite with Boo. I wish I had that little piece of a door. It seems that these milestone days open the door, but my loved ones are not really there. I am greeted by a flood of bittersweet memories. I have to decide when to step back across the threshold into the world of the living. On days like today, it is a sad journey. At the same time, I am grateful for the memories.
I am still Mulan, asking myself, “Who is this girl I see, staring straight back at me?” Grief has let me discover new sides of myself and reflect on who I am and who I want to be. In my opinion, that is never a bad thing. What I always strive for is that if I ever figure it out, that I am someone who, like Mulan, would bring pride to Ben and my family. But, I’m definitely no warrior, except, as Ben would tell you, at a really good sample sale.
Happy Birthday to my Mickey. You are missed every single day and I love you “¡hasta el infinito y más allá!”
