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You’ve Got A Friend In Me- Friendships During Caregiving, Illness and Grief

You’ve Got a Friend in Me
By Randy Newman

You’ve got a friend in me
You’ve got a friend in me
When the road looks rough ahead
And you’re miles and miles from your nice warm bed
You just remember what your old pal said
Boy, you’ve got a friend in me
Yeah, you’ve got a friend in me

You’ve got a friend in me
You’ve got a friend in me
You’ve got troubles, and I’ve got ’em too
There isn’t anything I wouldn’t do for you
We stick together and we see it through
‘Cause you’ve got a friend in me
You’ve got a friend in me

Some other folks might be a little bit smarter than I am
Bigger and stronger too, maybe
But none of them will ever love you the way I do
It’s me and you, boy

And as the years go by
Our friendship will never die
You’re gonna see, it’s our destiny
You’ve got a friend in me
You’ve got a friend in me
You’ve got a friend in me

Since today is International Day of Friendship, I’ve been thinking about the lyrics to the song You’ve Got A Friend In Me from Toy Story.

The song applies to so many aspects of my life. It is almost a caregiving anthem. I was there for Ben no matter what, seeing him through the darkest days. As the song says, there might have been stronger or smarter people, but the love we had was stronger than those qualities. As Ben was more vulnerable and more dependent on me for help, I know that he worried that I would say that I could or would no longer be able to take care of him. In his heart, though, when the road looked rough ahead, Ben knew that I would never leave him and that no one would ever love or care for him the way that I did. The unique bond we shared in our romance, despite the tragic circumstances, was a supreme kind of friendship.

Friendships can help to sustain us. I consider myself fortunate to have known my best friend for more than 50 years and to have had my closest friends for much of my life. We have been there for each other through the good and bad times. Sadly, over the past several years, I feel like I needed my friends often- as my dad became more ill and as Ben’s ALS progressed, and then, of course, as I grieved their loss. My patient and devoted friends listened to me repeat the same issues without any resolutions, and despite any opinions they held, they did not give up on me or Ben. They were also there to help Ben, being my backup if he needed assistance when I was with my dad. They voiced their concern for me. They asked what they could do for us. I knew that, as the song says, “there isn’t anything I wouldn’t do” was the way my friends felt about me, and it was and is mutual. I always placed a high priority on being there for my friends, but I still was not happy being on the receiving end of the giving during this time. At the same time, it was a huge comfort to know that I could depend on my friends, and it is beyond heartwarming to see them cheering for me as I have more steadily and confidently moved forward.

Sometimes friendships last forever, sometimes they are brief but deep. Sometimes we make connections that touch our lives although they are not even actual friendships. When I was the caregiver for my dad and Ben, I experienced all of these relationships. There were the people who unexpectedly reached out with a kind word or helpful gesture. There were people whom I did not know very well who had helpful insight, were there to talk at just the right moment, or were simply genuine in their expressions of concern. There were even people I did not know well who were kind enough to keep Ben in their hearts and do the Ice Bucket Challenge or contribute to ALS causes and our fundraisers with their families in Ben’s honor. I will forever be grateful for those moments and people. It’s an important reminder of optimism and faith in humanity.

Friendships also shift over time, even during good times, and that’s natural. People relocate, they get involved with different activities, have families. Terminal illness and my caregiving definitely caused a shift that forced me to evaluate what I considered good friendships. Some people whom I thought were good friends proved to be terribly disappointing. These are the people who said they never called because they knew I was busy, or who did not really ask much but were extremely judgmental. They were people who wrote lots of niceties on social media but never actually reached out or demonstrated friendship.

There were also people who, when we did communicate, would tell me that they knew they weren’t being good friends, seeming to want me to excuse them. At first, I did console them and say that I knew they were thinking of us and would have been there if I’d asked. Eventually though, I felt no sense of responsibility to make them feel that they were great friends because it simply wasn’t true. I felt abandoned when I needed to feel friendship. I suppose I could have reached out and asked for help or support or just a friendly conversation to help me feel like I was connected to my life and friends beyond my caregiving world. It’s hard to do that when you’re feeling overwhelmed by life. That would have been a way to care for myself but I was not up to it. I needed people to step up to me. When they didn’t, it was hard to accept that I simply didn’t fit into the lives of some friends the way I wished or expected. In many cases, I have remained friends with these people, but I do not feel the connection that I used to feel.

Ben also struggled with friendships as his ALS progressed. There were a handful of people who were loyal to him throughout his illness. ALS is known to be an isolating disease and, indeed, a person with ALS (pALS) loses the ability to easily communicate. Ben managed to text through his computer. His speech became impaired and if it was too difficult for him to be understood, he gave up trying. The number of people who reached out to him steadily dwindled. He felt unimportant and abandoned, which was heartbreaking.

We’ve heard the expression that to have a friend you have to be a friend. Friendship is a beautiful gift to give and receive. I do have to remind myself  that everyone has their own definitions of friendship and people form friendships for a variety of reasons with many different expectations of giving and receiving friendship. Some people need their friends during difficult times and others withdraw. It’s also important to see a big picture: as I needed more than I could give while my dad and Ben were ill, my friends might have those experiences as well. We cannot always be there for each other. What we can do is communicate openly, honestly, and compassionately.

Given all of these experiences, I had to make decisions about the friends with whom I would share my breast cancer diagnosis and treatment information. Although probably well intended, I did not share information that I felt would yield little more than social media emojis. I did not want to be defined by my diagnosis and I did not want to have to answer a lot of questions, hear unsolicited advice or feed anyone’s idle curiosity. I did not want anyone to feel obligated to follow up with me, either. Again, I am fortunate that I could turn to and rely on a wonderful circle of devoted friends.

It’s not always easy to know how to be the best friend you can be. Sometimes, in the case of someone who is caregiving or who is ill, it means asking how you can be a good friend, or just being genuinely present and available to listen, validate and comfort, or to let your friend know that you are giving them the space they seem to want but that you are there for them when and if they are ready for you. Not long ago, I compiled a list of things that you can do to help a caregiver. You can find that by clicking here.

Through our actions and expressions of love and support, I believe and am so very grateful that my dear friends and I agree that
And as the years go by
Our friendship will never die
You’re gonna see, it’s our destiny
You’ve got a friend in me.

Buzz was one of Ben’s heroes, but he loved Woody and friends, too! (July 2014)

If you are feeling lonely, I hope that you will reach out here, or on this blog’s Facebook page. There are also many online support groups- even on Facebook. Feel free to email and I will try to direct you to resources.

#InternationalDayofFriendship

Independence Day from a Lens of ALS, Aging, and Caregiving

My dad, USMC during the Korean War.

Today, here in America, it is July 4th, or Independence Day. Although I try not to delve into politics in this blog, unfortunately, this holiday makes it impossible to ignore current events. In our current, repressive political climate, I personally cannot bring myself to participate in any festivities. I cannot help but reflect on how our independence seems so fragile. I think about my dad on holidays such as these, and how he, the proud Marine, lamented that less and less families displayed a flag. As much as I miss him, I am relieved that he is not living through these times because I firmly believe that it would make him physically ill. He would be worried about my future, but at least now he is watching over me.

We take our independence for granted in so many ways, but now, independence is a concept that is being seriously challenged as our rights, and those of our loved ones and other citizens, are being reconsidered and revoked in a way that makes my country feel almost unrecognizable to me. Sadly, I watched my dad lose his independence as he aged and struggled with cancer, and I saw Ben lose his independence as he succumbed to ALS. Losing independence is hard to handle physically, legally, politically, and emotionally.

My dad was used to being the tough guy- after all, he was a Marine. As he got older, it was hard for him not to be able to manage the tasks that required physical strength. It was a hard thing to admit that aging has taken some of his independence. Even things that he could do independently, he wanted me to take care of. He wanted his independence but he wanted to depend on me. He wanted to know that I was there for him. I navigated his pride as I, the consummate klutz, and a pretty weak one at that- lifted and schlepped for him. He worried about my back but he did not want to have groceries delivered. I shopped in the city, cooked for him and brought everything to him by train. I know that he was comforted in the knowledge that I was going to take care of him. He was coping with fear of being alone, fear of his cancer progressing, fear of dying, and even fear of leaving me. Whatever it was, my dad had cancer, he was more than eighty years old, and I loved him. I was his caregiver and I was his daughter. Actually, anyone I met during his doctor appointments or visits to the neighborhood told me that I was his life. I knew that and he wanted me to know that.

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

Ben dealt with a loss of independence as ALS stripped more and more of his abilities. ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that ultimately results in the loss of voluntary muscle action. Patients are affected differently in terms of progression, but people may lose the ability to speak, eat, move and breathe in any order of events. Ben’s initial symptoms were weakness in his legs and lack of balance. Next, he struggled with the use of his arms and hands, then his ability to chew and swallow. His speech was impaired though he did not lose it until he had a tracheostomy, and he got a feeding tube at the same time.

This was Ben’s first excursion in the scooter, May 2010

Imagine the loss of all of those abilities that we take for granted. People with ALS cannot independently take care of daily life activities. That is a physical and emotional struggle. I was always struck by Ben’s sense of humor and determination to devise strategies for managing on his own. He was quick to purchase things like adaptive zipper pulls and computer accessories that allowed him to function at least somewhat independently. He loved his scooter and electric wheelchair because they gave him the freedom to get around and be outside. As he lost dexterity in his hands, it became more difficult for him to steer, but he could be out and about.  He tried hard to avoid, for as long as possible, his loss of independence.

As Ben’s caregiver, as he became increasingly dependent on me, I, too, lost independence. This was an emotional battle for both of us. Even within couples and families, each person maintains a certain level of independence. Ben and I lost that independence, albeit in different ways. I could no longer take time for myself. And, I witnessed Ben’s struggle and was consumed with trying to accommodate his efforts to maintain some level of independence. Ben and I were dependent on each other in this world in which our relationship was shifting beyond our control and we desperately wanted to maintain some semblance of who we were at our core, before ALS. After I lost Ben, I was frequently told that it was good that I could now reclaim my freedom. Only now, nearly seven years later, am I more comfortable with my independence. Still, I blog and maintain my deep connection to caregivers and people with ALS. My experience left me with some battle scars, but it also left me with a tremendous appreciation of and perspective on independence.

Ben even had fun on the Magic Express wheelchair lift!

Today is also the anniversary of Lou Gehrig’s famous speech, when he noted that “I might’ve been given a bad break, but I’ve got an awful lot to live for,” and he was “the luckiest Man on the face of the earth.” In a very public way, he lost his independence and the ability to continue his career. On a positive note, what great perspective and lessons in humanity and gratitude he left as his legacy!

Walt Disney said that “Mickey Mouse is, to me, a symbol of independence.”This was said in the context of the success that it brought him and his company, and the freedom to pursue his dreams. “Independence” is vital to our existence in many literal and figurative ways. On Independence Day, we honor this country and its founding principles. I was raised to be a patriot, grateful for our independence. I hope that we will be able to win the fight to preserve those values that are currently under attack and being chipped away. I do fear for their potential impact on the medical care and research that strives to help make ALS more manageable and, ultimately, eradicate this cruel disease and other horrible illnesses. I hope that legislation will progress that will support caregivers. In my practical way, I contribute, through donations, volunteering and the raising of awareness about ALS and caregiving. In my Disney way, I continue to wish for and dream about a cure for ALS and all other diseases and hope that this country wields its superpowers and that good triumphs over evil.

On Father’s Day, Looking Back to Look Ahead

I’ve written in prior posts that my dad did not like attention on holidays like his birthday or Father’s Day. He preferred to do things for other people, and not necessarily on holidays.  For this reason, other than feeling a little displaced and lonely without a plan to spend time with my dad, the holiday does not really bring me down. After all, I already miss him. I think that the hardest part of holidays like this is that I am reminded that I don’t really have traditional family anymore because the family I was closest to are not here anymore (click here to see that post).  I do believe that they are always with me, and watching over me, and that is a comfort. The cardinals in Central Park remind me of that, too, which is one of the reasons I have become so attached to being there.  Still, there are those times that I just want to pick up the phone, or feel a touch. I don’t fight the moments of sadness, but today I want to summon the loving and good memories, because I never lose sight of how fortunate I am to have them.

My dad, in one of his favorite photos, with our Miniature Schnauzer, Windy, at my Cornell graduation. Daddy liked to look serious, but he was quite the joker.

I have shared many memories of my dad, from his time in the Marine Corps to his love of animals to his sense of humor and wonderful laugh. More and more, I see how he has influenced who I am, in the good and not so good ways. People might think that I spoil Tinker Bell, as I did Disney and Tiffany, but I come from a family of pet spoilers! He never minded that our dogs loved to chase the squirrels, though he would shake his head as they barked at the same tree while he knew the squirrel had probably climbed to the next village! We loved animals, and I’m sure that he would have been feeding the squirrels with me, thrilled at the little relationships I have developed with my Central Park buddies.

With all of the chaos in the world, I miss getting his perspective, particularly given his extensive knowledge of history and the military. I know that what is happening would have devastated him- he was a proud Marine and a patriot through and through and his mother was from Ukraine (I believe that my grandfather was from Russia, but the borders and countries changed so often then that it’s hard to say). As much as I miss his presence, I am actually grateful that he is not living through what seems to me to be the downfall of this country, but I miss the comfort of his explanations. Daddy was a yeller, and I know that he would be calling me to scream about every outrageous attempt to destroy our democracy. I did trust his judgment on world events because time and time again events did play out according to his predictions. I think back to the days of Dan Quayle, when Daddy and I would rush to the phone to call each other as soon as we heard one of his mistakes. I even got him a subscription to the “Dan Quayle Quarterly.” Now, in light of what he and I would definitely consider damage to the country, Dan Quayle’s errors would be a welcome bit of relatively harmless comic relief!

Daddy’s kind generosity is something that I have tried to share with my students and what has surfaced so beautifully in members of my school club. The students are kind and I am touched when they say that my compassion inspires them. Really, those qualities were gifts from my parents. When I see the many students who do not have fathers to celebrate, for a variety of reasons, I know exactly how fortunate I have been in my life. Sometimes, it has been those very students who most value hearing about my dad and hearing me say things he taught me, such as “you get more with honey than with vinegar.” When he was alive, he often contributed to supplies for the arts projects I did with the kids. While I always enjoyed bringing new experiences to the kids, an added and especially touching aspect of this involvement of my dad was that for many kids, we were providing a feeling of being cared for, a real idea of family.

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

Today, I also remember that Daddy never wanted me to be sad. Believe it or not, he was not a huge fan of Disney or animation, but when I showed him videos of my Walt Disney World visits with Ben, he beamed because he said he loved to hear me laugh and happy. I cannot count the number of people who stopped me to tell me that I was my dad’s world. He was the consummate pessimist, except when it came to me and my potential, and I was his consummate cheerleader. At a time when I am pursuing writing and other ideas, I must to constantly summon the confidence my dad had in me that I have never had in myself.

Camera on his shoulder, Daddy always wanted to be the photographer, not the photographed!

Daddy would be humbled that I remember him, which is so odd to me, because he is always with me and is so much of who I am and what I aim to accomplish. Thank you, Daddy, for the lessons you taught me, the laughs and sense of humor you shared, the moral compass and patriotism you instilled in me, and the unconditional love and generosity you showed me.

I love you and miss you, on Father’s Day and every day!

Disney Helps With Mother’s Day Without My Mom

We were always Mickey Mouse fans!

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.

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.