Embracing Gratitude During and After Caregiving

, , , , , 0 Comments

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!

, , , , 0 Comments

 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

, , , , 0 Comments

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…