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.
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.
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.
