Embracing Gratitude During and After Caregiving

Today is Thanksgiving. Since I always take comfort in Disney, it stands to reason that I would be drawn to a quote from Walt Disney who said, “The more you are in a state of gratitude, the more you will attract things to be grateful for.” I have really tried to embrace that attitude and, for the most part, it helps me.

Thanksgiving has become a bittersweet event for me. It is a holiday that reinforces that I’ve lost the family to which I was so close. I had a lovely celebration with dear friends, but that ride home by myself to my apartment remains painful. I don’t know what I would do without the company of Tinker Bell, who is very vocal in her delight to welcome me home.

I know that I am forever changed and influenced by my experiences as a caregiver for Ben and Daddy, and then losing both of them within a short time. Thanksgiving carries a lot of difficult memories for me. I have flashbacks of my last Thanksgiving with my dad, spent in the hospital, where I schlepped a full turkey dinner that he ate, mostly, to make me feel better because I’d been crying and pleading with him to eat and get stronger. My last Thanksgiving with Ben was melancholy because he was feeling understandably low about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. I still find myself staring at the turkey gravy display at Trader Joe’s reliving the laughter and tears of my making all sorts of combinations of foods for Ben in the Vitamix as eating became increasingly difficult for him. I always had many boxes of Trader Joe’s turkey gravy because Ben liked it mixed with chicken and mashed potatoes, and I mixed it with all kinds of things to create a puree that he liked, including, if you can believe it, teriyaki chicken! Although it was easy to lose sight of it at the time, we did have things for which to be thankful. Being able to change our view and feel gratitude was indeed a superpower, because it gave us perspective that allowed us to always see the love that was there and be present in the moment. Now, reminding myself of the many things for which I’m grateful continues to warm my heart, even if those memories come with tears.

In these times, I turn to Mary Poppins, who said in Mary Poppins Returns, “When you change the view from where you stood the things you view will change for good.” As I have worked through my own experiences, I also recognized that many students were also stressed because they were caregivers, either for family members who were ill or even for siblings who they were helping to raise. In my classes, particularly when teaching remotely, I gave voice to students who were struggling with those responsibilities. I began a club at school to support students who were caregivers. The club attracted a group of students who were not necessarily caregivers but were compassionate and caring. Pre-COVID, we raised funds to help the animals affected by the wildfires in Australia. During the pandemic, we conducted remote journaling workshops for teens in residential centers. I shifted the view from where I stood and realized that these were students who wanted to help others and in fact, they were giving care and compassion. They felt good and the feeling spread. I did journaling and other self-care activities with them, and then I helped them to create their own workshops for other students. They supported each other, with advice about school, family and life. I was thrilled to see their friendships blossom. Also, it was inspiring to listen to their discussions focusing on ways to care for others, through activities, fundraising and volunteering.

We had a club “Friendsgiving” at our recent club meeting with apple and pumpkin pies, cookies, candy and beverages. We talked about possible activities and ways that we want to help and bring kindness to each other, students in school and community groups. We talked about gratitude, and how even when things are not going well, finding one tiny thing to be grateful for can spiral into a mindframe of gratitude. I wished them a wonderful holiday weekend and reminded them to do something kind for themselves. That’s not always easy for my students. But, I like to remind them that self-care is also caring.

Yesterday, one of the students in my club brought me this card. It touched my heart more than she could ever know.

It filled me with more gratitude. I am grateful that I was able to form this club and provide a platform for these lovely students to be the giving and thoughtful people they are. I feel oddly grateful that I was able to channel caregiving and grief in a positive and productive way. I would not have conceived of the club without that experience. As I see it, through my club I am paying loving tribute to Ben and my dad. I am reaching out to caregivers with a safe and compassionate environment and nurturing my club members with opportunities to spread kindness, be supportive, encourage self-care, and help others. I am so proud of my students. At a time when teaching could not be more disheartening, I am grateful to find fulfillment through the students in my club and the possibilities of reaching many others.

As always, Walt was right. Being in a state of gratitude has created an awareness of and continuous expansion of things for which to be grateful. So, in that spirit, I would also like to say that I am thankful for those who read my blog posts and share their own experiences with me. I am grateful for the inspiration of caregivers and carees who bravely and innovatively navigate life with ALS and other illnesses.

Happy, healthy and reflective Thanksgiving. Do something kind – however small or large- for yourself.

Happy Birthday, Mickey and Minnie!

 Dear Mickey and Minnie,

Happy 93rd Birthday!

From the Mickey Original exhibition in NYC

Age is just a number, especially thanks to you, because you bring out the inner child in all of us.

I always miss my mom and Ben on this day. They surely would have celebrated the magic. I must admit that I feel pretty lonely at times like these. But, I’m celebrating the long history that we have and remembering wonderful, whimsical times with and about you.

Though you’re a few years older than my mom would have been, she loved you from the time she was a child and she passed that love on to me. She was in her 50s when she and my dad went to Walt Disney World for the first and only time, and without me! I will never forget her phone call, giggling as she exclaimed, “Abby, I met Mickey!” This picture was taken on that day, and it is my favorite picture of my parents because, for me, it captures my mom at such a happy moment with her inner child aglow, and my dad was so amused. When I picked them up at the airport, my mom deplaned like the other children, unabashedly carrying a big Mickey Mouse and Epcot Figment in her arms. My mom was the consummate child at heart, and I get that from her!

When Ben and I began our relationship, our first dates often began with a stroll through the Disney Store that was near the office where we worked and met. We went to every new Disney film on opening day and we practically studied the Disney Catalogs, which, sadly, are no longer published. I found several copies that he kept because he loved the covers and I have kept those.

We always treasured our visits to Walt Disney World, so after Ben’s ALS diagnosis, the first thing we did was book a trip to Walt Disney World, and we were so fortunate to be able to go four more times. We didn’t know what we were dealing with, or how much time we had, and we wanted to go to the place that made all our worries disappear, at least temporarily.

Mickey Mouse, Minnie Mouse, ALS, Walt Disney World, Disney
Mickey’s Not So Scary Halloween Party 2012

I admit that I was the one who had to greet all of my Disney friends. But, with you it was different. Ben always wanted to see you. And, after his ALS diagnosis, it was emotional and tear-filled. With an ALS diagnosis, we wanted and needed to feel the pixie dust, and more than once I asked you for some magic. You both made a fuss over him and gave me the hugs of support that you just knew that I needed. I will never forget that.

Mickey was always there to help Ben.

For as long as he could, Ben would insist on getting out of the scooter and walking to stand in his pictures with you. It was when he chose to ride his scooter and then electric wheelchair up to you  that I was hit with the reality of his situation. It might seem strange that this moment was a revelation, when I was living with his ALS. But, living with something didn’t mean I really reflected on the entire situation. We adapted to the issues as they arose without really looking at them as milestones in the progression of the disease. Deciding that he could no longer walk up to you was a sign that ALS was winning the battle. But, Ben also had an incredible attitude, never lost his smile and laughter, and he remained determined to engage in life, especially with you at Walt Disney World.

Walt Disney, Walt Disney World, ALS, Caregiver, Grief
July 2014

You and your friends brought us a lot of joy at very trying times. You welcomed us into your kingdom and gave us fantastic memories. Since he has been gone, you have continued to entertain, console and inspire me. I was so happy to see you both when I returned to Walt Disney World back in October of 2019. I was grateful to have an opportunity to thank you for all that you did to raise our spirits and levels of hope. Although sadness loomed due to Ben’s absence, hugs from you let me connect with the past, feel secure in the present and know that I can count on you when I hit bumps in the road in the future. That is quite a gift!

Now, as I process and navigate my own health situation, I continue to find comfort and optimism from you. I look forward to returning to Walt Disney World and seeing you in person to get some pixie dust and Disney magic.

On your birthday, I shower you with tremendous gratitude, loyalty and love.

Happy Birthday, Mickey and Minnie. May you always continue to be the spark of hope, inspiration and happiness for children of all ages.

I will always love and thank you,

Abby

On Walt Disney, Finding Courage and Being My Own Caregiver

It has been about a month since I have been able to commit words to paper, or keystrokes to keyboard, as it were. I spent the summer doing a lot of introspection. Maybe, on some level, I was inspired by the looming milestone of my 60th birthday and wanting to move towards making some of my wishes come true. Turning sixty is, for me, a notable milestone, but I possess my mother’s strong inner child. In a way, I was looking forward to getting past the age of fifty-nine, since that was the year that my mother died of a sudden, massive heart attack. Fifty-nine did end up having a health scare for me, though, thankfully, I am still here to tell the tale.

As part of my self reflection, I did go down the rabbit hole of reading some self-help books, and I found a couple that truly resonated with me. I also practically meditated on Walt Disney’s inspirational quotes, including “All our dreams can come true, if we have the courage to pursue them,” “First, think. Second, dream. Third, believe. And finally, dare,” and “The way to get started is to quit talking and start doing.”  I committed to these ideals by turning wishes into goals. I finally began to write a book based on my blog that is part memoir and part guided journal for caregivers. I have not yet completed it, but I have loved the process and feel that it will be a heartfelt and valuable book. I also began to explore writing for children, which is also something that I have wanted to do for longer than I can even remember. I took the time to notice how much peace and self-awareness I find in writing and nurturing the sparks of creativity. I struggle with confidence, but I try to focus on doing rather than interrupting the flow with doubt. Where teaching has become a stifling frustration, pursuing other avenues has given me a sense of optimism and fulfillment. I embrace the positivity and that has felt good. The summer felt productive, personally and professionally.

As with so many stories, I experienced a twist of fate towards the end of the summer. After a series of tests and biopsies, a few weeks ago, just before my birthday, I discovered that I am facing a health challenge. I pat myself on the back for being on top of cancer screenings despite my dislike of all things medical. My reward is that the problem was identified very, very early, and I have every reason to believe that I will be absolutely fine. Of course, as with many health problems, it was unexpected and jarring. The outlook and plans that I cultivated over the summer felt shaken and I have had a difficult time summoning the positivity to continue my creative work.

Waiting is always difficult, and when it comes to medical ordeals, I think it is even worse. I am trying very hard to employ my most optimistic mindset despite my Inside Out emotions that are all over the place. Logic tells me that I will do what I must do and will triumph. Emotions tell me that this was not the way I wanted to begin this new decade of my life. With all this swirling around my mind, it was hard for me to even feel “happy” about my birthday. There have been a lot of tears and “what if…” moments going through my mind. I did, however, feel the joy of profound gratitude that I was surrounded by the love of dear friends who wanted to celebrate me, which is usually something beyond my comfort level.

I debated sharing this information here, in such a public way. In fact, I have been reluctant to tell many people. On a cosmic level, I don’t know if I want or am ready to state it for the universe. Ultimately, I felt that caregivers might relate to my experience. Although I do not yet know exactly the full extent of my medical circumstance or treatment plan, my mind keeps drifting to memories of caregiving for Ben and my dad. I wonder what would have happened if this occurred when Ben and my dad still needed me to be their caregiver. I remember that when I broke my shoulder, my biggest worry was how to care for them, and it was a huge relief that Ben was still fairly independent, but I defied medical advice and traveled to visit my dad and drive him to appointments. Interestingly, while I never thought twice about missing school when my dad or Ben needed me, I am already worried about missing school and taking time to care for myself. I am now faced with the fear, confusion and helplessness from which I tried to shield Ben and my dad. I have to question why caring for others is so very different from caring for myself. Don’t caregivers owe it to themselves to care for themselves? My caregiving days are over, but why do I have such trouble accepting that I am now my own caregiver? It is time for me to call upon the fortitude that I showed to Ben and Daddy. Easier said than done.

My caregiving days and days of grief taught me a lot about people. I consider myself to be very fortunate to have amazing friends who have been and will be there for me. Selfishly, however, I am scared and devastated that I don’t have that one person who is there for me the way that I was there for Ben and my dad. Maybe my experience as their caregiver will empower my own inner strength, resilience and willingness to lean on my trusted and cherished friends. I also know that opening myself up to others can also bring unwanted and negative energy from people. I do not want to be asked a lot of questions, particularly from people who ask either out of perceived obligation or for the drama that fuels them more than out of genuine concern about me. I do not want a lot of unsolicited advice with the “have to” and “should” commentary. I also do not want to hear from the suddenly abundant self-proclaimed “empaths,” who, in my experience, do little more than make situations about themselves rather than the person they claim to care about. I will have to find for myself the voice I used to advocate for Ben and my dad.

The reality is that I took a backwards tumble over all the positive steps I took during the summer. All my efforts to envision good health were tossed out the proverbial window. Despite this, my heart and mind recognize that the groundwork I set this summer offers me hope for the future, and those ideas still motivate me. I need to work through my feelings, much as I had to work through my experiences in caregiving and grief. I think it is a good sign that for the first time since I learned about my health issues, I wanted to write a blog post. Also, for the first time in a few weeks, I resumed work on the second draft of my book. And, I have continued to participate in my writers groups and writing classes because I did not want to dwell in sadness, choosing to live in whimsy and creativity. I want to engage with things and people that comfort me and guide me forward. One of my very favorite quotes from Walt Disney is, “We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.” I see that in myself. I stood by Ben and my dad as they faced their illnesses. During that time, I lost myself, but I emerged from the depths of grief discovering new sides of myself. I tiptoed back into life until I was willing to plunge back wholeheartedly, accepting the good moments as well as the setbacks. Now, I need to be there for myself and keep moving towards my dreams, even if I confront a few Maleficents on my journey. I just need to find a wishing well.

ALS,Caregiving,Grief,Walt Disney World, Disney
Looking ahead…

What I Learned About Caregiving From Mary Poppins

Yesterday, October 1, marked the 86th birthday of Julie Andrews. As always, it is an opportunity to devote a post to my beloved Julie and the role that introduced me to her and remains my favorite Disney film: Mary Poppin. The consummate nanny, Mary Poppins taught me many things about caregiving. Mary Poppins was the first movie I saw in a theater and clearly left a lasting impression!

A kind yet stern and always magical nanny, Mary Poppins added whimsy to life while addressing all of its practicalities and mishaps. She got Jane and Michael Banks to use their imaginations and see beyond the confines of their nursery.  They were safe in her care, learned the importance of rules but also how to challenge them, and, because she knew just how to step in, they built and strengthened relationship with their father. She knew how to meet the needs of the Banks family better than they did. Now that’s what I call a great caregiver!

Here are ten lessons about caregiving that I learned from Mary Poppins:

  1. “In every job that must be done there is an element of fun.”
Mary Poppins 3

There were days where there was nothing fun in the actual tasks required in Ben’s care due to ALS. But, those silly moments that made us laugh amidst the sadness are the ones that still stand out.

  1. “Worrying won’t help anyone.”
Mary Poppins 4

Even as a worrier, I know it’s true. It doesn’t help. But, if it helps you to picture worse case scenarios and create plans if necessary, go for it. Just don’t dwell! Trust Mary Poppins. It doesn’t help.

  1. “Just a spoonful of sugar helps the medicine go down, in the most delightful way!” 

Lyrics to live by! I was there for a reason, and that reason was love and compassion. There’s the sugar. It made the awful, embarrassing tasks “swallowable.”

Click to play:

  1. “Never judge things by their appearance…even carpetbags. I’m sure I never do.”
Mary Poppins 7

Because a person needs a caregiver does not mean they become irrelevant. When people would come to see Ben and talk to me as if he wasn’t there, I would redirect them to include him in the conversation, even if I had to explain what he was saying as his speech became more impaired. His brain was still very active. He mattered. I did not let anyone make assumptions about his capabilities or ideas. Always let the person know they matter. Because they do.

The same goes for people who judged our relationship. Whatever people thought of me, or of Ben, and our caregiving situation, we were the only two who were actually in our relationship for sixteen years. In any caregiving situation, particularly within a family, there are dynamics that only those involved can really understand. You can have opinions, but tread gingerly when it comes to offering advice, even if it is requested.

  1. Sometimes a little thing can be quite important.
Mary Poppins 1

A smile, a thank you, a kiss, remembering something special. I’ve written about how Ben and my relationship felt like it shifted from husband and wife to patient and caregiver. It was in little things like holding hands, sharing memories, or “inside jokes” that we were brought back to who we really were as a couple before ALS.

  1. Best foot forward. Spit spot.
Mary Poppins 6

It’s all you can do. And, when you’re dealing with a lot of crises, you can’t take a lot of time to ponder. As I’ve said in prior posts, I often had to “just keep swimming,” even though I belly-flopped, but I always put my best foot (or fin?) forward!

  1. Let’s go fly a kite

All at once you’re lighter than air
You can dance on the breeze
Over houses and trees
With your fist holding tight
To the string of your kite

Mary Poppins 5

OK, we couldn’t really do that. But, we had to maintain a sense of fantasy and whimsy that could take us outside of our reality, at least for a few moments. The trips we took to Walt Disney World were always magical, and they took on a special meaning after his diagnosis. Those trips were the kite that took us briefly away from reality. Now, I can look back on those memories with gratitude and a bittersweet delight.

  1. It’s a jolly ‘oliday with Mary

Oh, it’s a jolly ‘oliday with Mary
Mary makes your ‘eart so light!
When the day is gray and ordinary
Mary makes the sun shine bright!
Mary Poppins 2

Ben teased me that I loved to use the word “whimsical.” But, I enjoyed bringing whimsy into his homebound life. I often arrived home with shopping bags of “treats”- new tshirts for his collection, a gadget that I thought might help him, a new ingredient for our culinary adventures into pureed concoctions. It always made him smile and laugh. That made the “sun shine bright” for both of us!

  1. Supercalifragilisticexpialidocius

It’s a great word. Covers a lot of territory. It especially made me chuckle to myself when a bevy of not such nice words were going through my head!  Try it.

Click to play:

  1. “Mary Poppins. Practically perfect in every way.”
Mary Poppins 8

I tried, and often beat myself up too much for feeling that I was not a good enough caregiver. It’s a great goal, and always important to remember that we all define “perfect” differently, and that the definition may vary by circumstance. I hope that, at least at times, I was Ben’s Mary Poppins.

Walt Disney World 2002- My second trip to Walt Disney World with Ben. The pre-ALS days.

All film photos: Mary Poppins (1964), Walt Disney Productions.

Six Years: Revelations About Grief From An Unlikely Source- Bruce Springsteen

My dear Ben,

Yesterday was six years. For the first time, I could not bring myself to write. As always, I spent the evening before reliving that last evening spent in the hospice unit. You slept most of the time. I spent the night pacing the halls, sometimes sitting in your room and sometimes in the family room. I wrote in my journal, trying to make sense of the fact that you were going to leave the next day. I could not quite imagine what that would be like, and frankly, I was scared. I’m still grateful that you left this earth surrounded by love and music, and even Disney. It still also hurts to my core. I have repeatedly watched this video, which I made on the anniversary of my first year without you. I hope you feel the love. I believe you do.

This year, for the first time, I made a plan to go out last night, on this milestone date. It is hard to believe that it was not a Disney event. I saw Bruce Springsteen on Broadway. I always wanted to see Bruce in concert but knew that I would never be comfortable in a concert crowd, even without the COVID issue. I was just so happy that I could see him in my comfort zone- a Broadway theater. On the day tickets went on sale, I got on the virtual queue and was surprised that I cycled through pretty quickly. I clicked on every single date starting with opening night, and I was thrilled to finally find a ticket. I didn’t even check the date. When I clicked the checkout button, I saw that the date was August 26. I hovered for a long time because it seemed so wrong to go on a sad date to an event that you should not have been cheated of attending. Also, I never know how I am going to feel on milestone dates like this- unfortunately, I have many. I went back and clicked on all the remaining dates. Nothing. I started to wonder if you were sending me a message. I know that you send signs to me. Some people would say I construe things as signs, or I look to make them signs. Maybe. Maybe not. What matters is that I see them as signs, and it comforts, validates, and helps to guide me. I decided to get the ticket, figuring that I wouldn’t know how it felt unless I went. It might be a mistake and it might be okay. I do test the waters.

From the time I secured that ticket I was conflicted. Should a milestone date continue to paralyze me? Is it more respectful, or even safer, to stay home with sorrow? I still have no firm answer. I still think about the quote from the live action Cinderella: “time passed and pain turned to memory.” Should it? For me, the pain is still here. It is not just a memory. Yes, it has shifted and it isn’t as acute on a daily basis. I have learned to co-exist with it. I go with the happiness, and I go with the tears.

The week was spent thinking about and dreading August 26th yet knowing that I was also going to an eagerly awaited concert. I felt your presence all week, which is always a good thing. Since I am writing a book from my blog posts, I have been revisiting daily so many memories, photos, and emotions. All of this added to the stress about yesterday. As is my tradition, I watched Monsters, Inc. I also made Mickey waffles, thanks to Kathyrine, my lovely former student. I gave Tinker Bell the Buzz Lightyear catnip toys that I ordered from Chewy, and I told her more about you. She loves these toys so much that it makes me think she knows that they are extra special because of you. I looked at our bevvy of videos and pictures.

I waited until the very last minute to get ready for the performance. As I walked to the subway, a woman in a scooter like the one you had was riding towards me. I moved to the side to let her easily pass, but she came right up to me, stopped, complimented my skirt, and signaled with an okay sign as told me that I looked beautiful. That’s an odd occurrence on many levels, but I have had a couple of interactions with angels, and I believe her to have been one. I spent the train ride to the theater wondering if you had sent that message to let me know it was good that I was going to the performance, and it made me feel better.

At the theater, I purchased two tshirts and a tote bag- I needed proof that this Disney and Broadway show tune loving gal did, indeed, attend a Springsteen concert! I spent most of the time waiting for the show to start thinking about you– that you would have been happy to be there, that you should have been there, that it was surreal for me to be there. I don’t think I thoroughly convinced myself or anyone else that I was truly excited about it.

The lights went down and the show was about to start. That moment is always magical for me. Bruce entered the stage and I felt myself smile at seeing him. He told beautiful stories and sang songs, some of which I knew well and others that I do not think I had never heard. It was just him, and his wife, Patti Scialfa, joined him for a couple of songs. With your knowledge and love of music, you would have loved this concert, though I am pretty sure that you were there with me. He told stories of his youth that were funny, touching, and poignant. He talked his family and friends, and notably about the loss of his dad and friends who died in the Vietnam War. He talked about Clarence Clemons and how much he missed him. He said that it was hard for him to believe that they would never enter a stage together again. He conveyed that with his songs and performances that he was able to visit with these people – ghosts, as he called them- and that they are always with him. I cried. At the same time, it was something that I needed to hear. For all I know, you wanted me to be there and to hear that message. I will always miss you, and there will always be a sadness that is amplified on days like yesterday, but you will always be with me and will be a part of what I do.

Wearing my Americana Mickey mask to bring my Disney self with me!

After the concert, I hailed a taxi. Once in the car, I started to cry. I think all my emotions converged- sadness about the day, worry about going to the performance and how I would feel, if I was doing the right thing to plan to enjoy myself at a performance on this date, and having had a profound experience that touched me deeply. I posted on social media about the incredible performance. Indeed, it was an emotional event for the concert and for the lessons.

I awoke this morning and again began to cry. I have been struggling all day. Sometimes, it is like that. I brace myself in anticipation of the tension of each milestone date, and then the next day is worse. That is what is happening today. I am sorting through the messages I believe that you sent and Bruce’s words. Bruce’s music is infused with all his memories, whether it is the old tunes, the new ones or the ones he has yet to create. I guess listening to him describe it led me to the revelation that my past has brought me to my present, where in my writing, volunteer work, and even the formation of my club that fosters a compassionate school community, I visit with you, my dad, my mom, grandma and the other people I’ve loved and lost. It is not about how I choose to honor a milestone date. It is how I choose to live, with the old and new memories. That doesn’t yet make it easier, but it helps.

I do take every opportunity to honor you, my Ben. I hope you feel that. I hope that you are enjoying what I am absolutely certain is your constant presence at Walt Disney World as the grim grinning ghost you wished to be, and that you are, as you always dreamed during your battle with ALS, walking, running, talking, singing, eating and playing music.

I love you,

Abby