Caregiver

It’s Stitch – Experiment 626 – Day! Memories of Stitch and ALS

ALS, Walt Disney World, Lilo and Stitch
The very first time we met Stitch, October 2006!

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.

Making new memories at Walt Disney World 2019

Happy Stitch Day!

Happy Birthday and Thank You, Goofy!

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.

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.

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!

Eight Years Without My Dad and What Winnie The Pooh Understood About Goodbyes

Today marks eight years since my Dad left this world. For the past few days, I have found myself thinking of the bittersweet wisdom of Winnie the Pooh, who said, “How lucky am I to have something that makes saying goodbye so hard.”  I can relate to this. Unfortunately, February is a month filled with reminders of the many goodbyes I have had to say. The month is marked by my dad’s birthday, Ben’s birthday, and the anniversary of my grandmother’s passing. A few years ago, on my cat Disney’s last day, I told the vet it might as well be in February, since nothing good happened in this month.

After yesterday’s 60 degree weather, today there was snow. On the day that my dad died there was such a severe snowstorm that the trains, buses and cars had all stopped and I could only speak to him on the phone. I can’t stop those bad memories, but at least, for the most part, I try to focus on the good ones, on his sense of humor and laughter, and how much love we shared. He had unwavering faith in me that I wish I had in myself. This always plunges me into the profound sorrow of loss and aloneness. I miss my Daddy.

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

In a February of heartbreaking events, Valentine’s Day was the one occasion in which I could find joy, even after I lost Ben. I have hand-made cards for my family since I was young and I have continued that tradition. It did not matter if there was a romance in my life, I was enamored with the idea of sharing love. As my family disappeared, I learned that my great-aunts and great-uncles saved the cards I had sent them, and many even made their way back to me. It touched my heart that the cards (and I) were loved. I began a tradition of making cards for my friends. It is my special (and maybe corny) way of showing my friends how much I value them. It has also been a positive distraction from focusing on grief.

Last year, my aunt Eleanor died on Valentine’s Day. I remember feeling frustrated that due to COVID, I would not be able to visit her and bring her a card. Even when she was almost completely nonverbal, Ellie always smiled at her card, and she seemed to love to look at the featured pictures of my cats. Although her quality of life had significantly declined due to Alzheimer’s disease, and she was in a nursing home, I was crushed to lose her. Sandwiched between the day my dad died and his birthday, Valentine’s Day was already kind of surreal, but Ellie’s passing made it a three-day streak of awful anniversaries.

I tend to waver about doing things or maintaining traditions that fall on milestone dates. Interestingly, there was never a question in my mind that I would continue to make my Valentines. Maybe I have become even more intent on making the cards because they allow me to delve into my creative self-expression and to feel joy and life as I think about my friends and the love that surrounds me. It is a form of self-care that hopefully brings smiles to my friends, even though Tinker Bell would be just as happy without her starring role.

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

In the Disney Pooh’s Grand Adventure: The Search for Christopher Robin, Christopher Robin tells Winnie the Pooh, “If ever there’s a tomorrow when we’re not together, there’s something you must remember…You are braver than you believe and stronger than you seem and smarter than you think…. But the most important thing is, even if we’re apart, I’ll always be with you. I have written so often about how I see my dad in many things that I do and in who I am as a person. I am proud to be his daughter and always hope that I am making him proud and doing justice to his memory. I hear his giggle in my head. I share stories about him with my students. They know, and quietly respect, that every day, I stand for and recite the Pledge of Allegiance because he was a proud Marine, and I believe that they learn compassion and respect by observing me. My dad would appreciate that. The thing is that February’s bevvy of milestone dates is an ongoing reminder that it is not always enough to have the memories. At least Valentine’s Day gives me an opportunity to acknowledge the important people who are present in my life now. Particularly as I have been facing my own health issues, surgery, and treatments, my close friends have been the support that gets me through the aloneness. This would make my dad happy and relieved since he always worried about me and my future when he and Ben were both ill.

I cannot deny that this is a difficult time, but the silly little bear is right that although the goodbye still hurts, I am so fortunate to have loved and to have had the love of my dad. That love will always be my Valentine.