We Don’t Talk About Bruno…Or Being Our Own Caregivers

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.

Grandma- Always In My Heart

If you’ve followed my recent posts, you know that February is a difficult month for me, with several anniversaries. My dad’s birthday was February 15 and day he died was February 13. Ben’s birthday was just two days ago. Disney died on February 7. On Valentine’s Day I marked one year since the passing of my Aunt Eleanor. Today, February 23, is the day my Grandma, Dora, died. Since her birthday is coming up, and things have been rough with these milestones, I want to respectfully acknowledge this date and my love for my grandmother, but I will wait until March 5, her birthday – at least a happier date – to share more about her.

I grew up in a house with Grandma. I was with her in that house when she succumbed to cancer. We were extremely close, knew the best and worst of each other and loved each other unconditionally.

Grief,Grandmother,Moana,Gramma Tala,Walt Disney Pictures

There’s nowhere you could go that I won’t be with you.Gramma Tala, Moana, Walt Disney Pictures 2016

Grandma is a part of so many memories, and of much of who I am, and for that I am grateful. Just as Gramma Tala told Moana, I know that my Grandma watches over me, proud of my baking and my love of fashion and delighted that I always talk about her importance in my life. Sometimes it makes me sad that all of the people I loved the most are carried in my heart instead of actually here, but I still feel fortunate to have known so much love and it’s a comfort to know that they are always with me.

I am thinking of you today, Grandma. You are always in my heart and I love you and miss you.

Grandma and I around 1990

On Ben’s Birthday and Other Milestone Dates, There is Love To Infinity and Beyond

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!”

ALS,Caregiving,Grief,Walt Disney World, Disney
My silly Ben with his buddy, Buzz.

A Birthday Tribute to My Dad and Cinderella- Life Lessons in Love

Dulcie was always a part of our birthday celebrations!

Today, February 15, would be my dad’s 92nd birthday. My dad never wanted to make a fuss over his birthday, but I always did. He deserved it. My dad taught me so much about life, integrity, generosity and loyalty, as well as the importance of a sense of humor and of being able to laugh at yourself. I strive to make him proud because I know he’s watching over me. It remains surreal to celebrate his birthday just two days after marking the anniversary of his passing and remembering that eight years ago I spent this day knowing that his funeral would be the day after his birthday. Still, his birthday is a time to honor his life and my love for him.

It may be inconceivable, but my dad was not a fan of Disney animated films. After all, he was a Marine! Who would have thought that I could draw a connection between my dad and Cinderella? Well, I can! Cinderella and my dad share a birthday, since the movie Cinderella was released by Walt Disney Productions on this date in 1950! She has remained dear to my heart since childhood because she was the first princess I loved. Of course, when I was growing up there were not as many Disney princesses, but as I have grown up, I have found that there is more to Cinderella than what meets the eye. She appears simply sweet and naïve in her dreams of love, but she had feistiness and determination, and also a loyalty to her father’s memory that I share with all my heart. It was very hard for her to lose both of her parents, but she let their lessons and moral compass guide her. Cinderella’s loyalty to her parents is made even more clear in Disney’s 2014 live action version of the story. It is something I completely understand to my core. I cannot ignore that while Cinderella had her sweet mice friends, my dad and I had our love of dogs and animals.

Cinderella knew the importance of integrity and the power of dreams, and in the end, all of those qualities got her the love of the prince of her dreams and a position of respect! She knew with all her heart that, despite her stepmother and stepsisters treating her horribly, “They can’t order me to stop dreaming.” There’s a good life lesson. I know that people sometimes think I’m unrealistic because of my Disney love and its connection to wishing and dreaming. On the contrary, as the caregiver for my dad and for Ben, I was hit with harsh realities on a daily basis. Dreaming and wishing were my escape. They encouraged me to find creative ways to solve problems. And, they allowed me to envision a future where my dad and Ben had peace and comfort and I could stand alone and live happily with them in my heart. Now, as I work through grief, dreams help me to redefine myself and reshape my life. No one can tell me that dreams are not valuable and important.

During caregiving days, when my dad and/or Ben was struggling, knowing that in the end I was going to lose them, it was easy to lose hope and optimism. In those times, I had to thank goodness for the insight and “Bibbidi-bobbidi-boo” of Cinderella’s Fairy Godmother. For me, the dreams and the wishes got me through very difficult and sad days of terminal illness and caregiving and feeling that nothing I did really mattered. There were no cures, no one was going to get better, and things were becoming more difficult. But, I could dream, and those dreams helped me keep the faith.

Maybe you don’t literally talk to your Fairy Godmother, but I imagine that a lot of readers have had a similar conversation with someone, or with themselves, and questioned their faith that they could handle things or that things would be okay. If you have not done that but find yourself with lots of jumbled thoughts, talking, writing, journaling or any form of art or craft are ways to explore your self expression.

There is a song in Cinderella called, So This is Love.  Though the song is about romantic love, the title is significant. When we are watching someone struggle with illness or we are struggling with caregiving responsibilities, we accept these challenges, and embrace them, because this is love. It’s that simple. And, that complicated.

At the heart of the film is the song A Dream is a Wish Your Heart Makes.

A dream is a wish your heart makes
When you’re fast asleep.
In dreams you will lose your heartaches.
Whatever you wish for, you keep.
Have faith in your dreams, and someday
Your rainbow will come smiling through.
No matter how your heart is grieving,
If you keep on believing,
The dreams that you wish will come true.

I’ve always been a dreamer who wished for the fairytale ending. Sometimes I think that it’s a matter of perspective. I do believe that my wish came true that my dad and Ben are both at peace, even though grief is hard for me and times like these past few days are quite sad and lonely. I’ve written before that I will wish for and dream about cures for ALS, and also for cancer and the many other horrible diseases. Sometimes it seems futile, but I remember that Cinderella’s Fairy Godmother said, “Even miracles take a little time.”

Cinderella (1950) Walt Disney Productions

My dad called me his Private Benjamin, but I was also his Cinderella- his treasured princess- and I will always keep his spirit alive and let him guide me.

Happy Birthday, Daddy! I always hear your giggle in my head and I love and miss you!

You could take the man out of the USMC but you couldn’t take the USMC (or the camouflage) out of the man!

Finding the Pixie Dust On A Difficult Valentine’s Day

This year’s Valentine card, featuring Tinker Bell and my new craft, paper quilled Mickey and Minnie, hearts and random shapes.

I have always loved Valentine’s Day. I have hand-made Valentine cards for as long as I can remember. My great-aunts and great-uncles, and of course my parents, aunt and grandma, saved all of them. As they’ve passed on, their collections of the cards I made for them made their way back to me through relatives so I would know that they were kept and treasured. Ben had his own collection, and I look at all of the cards from time to time and on days like this. I see them as testaments to the love we all had for each other. For my older relatives, my cards were the only fun mail they received and I was the person of my generation who always reached out to them. Crafts give me a sense of peace and inspiration, so instead of stopping the tradition, I decided to continue to tap my inner child with my card-making tradition, giving them to special people in my life.

I must admit that Valentine’s Day is bittersweet. As I posted yesterday, my dad passed away the day before Valentine’s Day in 2014. I spent Valentine’s Day that year making his funeral arrangements. My dad’s birthday is tomorrow. Ben’s birthday is the following week, followed by the anniversary of the death of my grandma.  

With Ben, our Valentine’s Day celebrations were often sweet and simple. Following his ALS progressed, after I put him to bed, I would make a card and decorate the apartment. He heard me rustling around (one of the downsides of being a klutz!) and knew that I was creating something for him, and he looked forward to his Valentine’s Day surprise. It added some whimsy to his homebound life and was a loving time. I do miss those special and romantic rituals. 

The last Valentine I made for Ben, in 2015.

I reflected in yesterday’s post (click here for that post) that despite the sad dates that mark the month of February for me, and maybe because of them, I seize the opportunity to celebrate love on Valentine’s Day. Making cards for my friends is so important to me because it is a positive, creative and fun tradition in which I reach out to my treasured friends to let me know how much I value them and also remind myself of how much love there is in my life.

Last year on Valentine’s Day, my beloved aunt Eleanor died after many years with Alzheimer’s Disease. She had not been verbal or recognized me in quite a while, but I was not able to visit her due to COVID and lamented that we would not have our Valentine’s Day visit. She always held the cards and smiled as she touched the picture of my cat that always is featured on the card. Ellie and I had a special bond and even when she could not recall my name or who I was in her life, I could make her laugh and we seemed to relate to each other as we did throughout my life.

I am currently on a leave of absence from teaching due to surgery and treatments, and I miss sharing the Valentine’s Day experience with my students. I believe in sharing love and appreciation with my students. I teach them some love phrases in Spanish and bring a bevvy of stickers and glitter glue for them to make Valentine’s. They do respond with smiles, creativity and love. Being teenagers, most are concerned with romantic love, and lament the lack, or the drama, of it. They know that I lost Ben and they are always intrigued by my enthusiasm for this holiday. I see that it resonates when I say love comes in many different ways, even in my love for them. I have been delighted to receive some Valentines from them, too! I like to think the life lessons on kindness stay with them.

The holiday is definitely different now, and, honestly, not as happy, but it does give me joy to take a positive action to show my love and appreciation for special people, in my craftsy way, and to share a special tradition that keeps Ben, my parents, grandma and great-aunts and great-uncles close. It lets me summon the Disney princesses and the hope that I will one day meet a new prince.

If you are struggling on Valentine’s Day, here are some thoughts and ideas:

If you are in grief, or are a caregiver grieving the life and relationships you used to have, this is a good day to focus on the love and caring that surround you. These are times that we can feel lonely, and alone. In many cases, friendships change and there is alienation. Frankly, it can be hard to think of love. The challenge is thinking of the littlest gestures that stay in your heart. The kindness of someone on the medical team, patience shown to you, a memory that brings a smile, a smile that you brought to your caree. On days like this, when it’s easy to feel sad, I find myself hearing Walt Disney say, “The more you are in a state of gratitude, the more you will attract things to be grateful for.” It might feel phony at first, but there are many loving moments for which to be grateful. If you’re craftsy, make a card for someone. Email a card, send an ecard. Let someone know that you appreciate them. Many of us have experienced people who want to be supportive but do not know how. Receiving correspondence from you might encourage them to reach out more regularly. Write a love note to your caree or to the person you have lost sharing loving memories. You do not have to share these letters. If you follow my blog, you will notice that some of my posts are letters to Ben. They are helpful forms of self-care. Click here for an example from the most recent anniversary of his passing.

I am grateful and feel appreciation for the many former and current caregivers I have met for sharing your stories and your hearts. Tinker Bell and I wish everyone a Happy Valentine’s Day filled with love and friendship, and a sprinkling of pixie dust!

Tinker Bell supervises the final touches on our Valentine’s, since she’s the star!