Grief

On Walt Disney, Finding Courage and Being My Own Caregiver

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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…

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

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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 she 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 showtune 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 ever heard. It was just Bruce, but 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

40 Years Later, Widow Tweed (“The Fox and the Hound”) Still Gets to the Heart of Grief

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This time of year is always one filled with conflicting emotions. I am beyond elated and relieved that a school year has ended, but there are so many sad memories. Six years after losing Ben, I still find that I rehash events of those days. July 6 is the date I refer to as the day that everything changed- this is the day that Ben went into the hospital. From July 6 until his passing at the end of August, I rarely left Ben’s side as he dealt with a feeding tube, a tracheostomy, pneumonia, infections, a lot of family drama, having to decide how he wanted to live and die with ALS.  July 8th was my mom’s birthday. It was never a good or easy day, but spending that day with Ben in the hospital, not knowing what was going to happen to him, made it that much more stressful and compounded the emotion of this day.

Ordinarily, I don’t make plans for milestone dates. I do not punish myself or insist on any kind of ritual of sadness. There have been years that I could barely get out of bed and surrounded myself with Ben’s favorite Disney movies and The Little Mermaid, a film my mom and I had a great time watching together. Sometimes, I have just wanted to stroll through Central Park, feeding the turtles and the squirrels. I accept that I never know how I am going to feel, and I allow myself to follow my mood. I do not generally argue with people who tell me what I “should” do, but I also don’t listen to them.

This year, I made plans to visit my forever friend, Dorie, and her husband Damian, during the time that spanned both dates. When we chose those dates, I did think about the milestones, but I did not feel conflicted about going away. I took Amtrak on July 6, which reminded me of the many long weekends Ben and I took on the train. Ben loved the train- even a seven-hour ride to Vermont! I miss those rides with him and the romantic getaways. During my ride to Dorie’s, I did, however, find myself smiling rather than crying at the memories. Of course, we all find ways to rationalize things, but I believe that Ben would likely be pleased that I was doing something that would remind me of him and of us.

The milestones were definitely on my mind on those dates, but I was okay. I am fortunate and grateful to have wonderful friends who are patient with my sharing of memories but who help me live in and enjoy the present while I keep Ben and my mom in my heart.

I do have to admit that I was torn about buying tickets to see Bruce Springsteen on Broadway on the anniversary of the date of Ben’s leaving the world. I had clicked on every single date and that was the only available date (at a barely reasonable price). It took a while to confirm the sale as I wondered if I could enjoy a concert, or anything else, on that date. I decided that I won’t know if I don’t just go, and hopefully, since Ben loved music so much, I will especially enjoy it through his eyes and with him in my heart. I generally believe in signs, so I would like to think that my finding a ticket on that date was a sign from Ben that it is okay, and I should go. Still, I am conflicted and hoping that this event works out as well and as enlightening as my visit to see Dorie.

The Fox and the Hound celebrated its 40th anniversary last weekend, on July 10. I have been thinking a lot about the quote from the heartbreaking scene when Widow Tweed tells Tod that “Goodbye may seem forever, farewell is like the end, but in my heart is a memory and there you’ll always be.”  This year will mark six years since Ben left the world, and I realized last week while I was away that I am getting better at balancing the memories and the love with being in the here and now and, looking forward. There is a tinge of discomfort at smiling and carrying on with life, but not a sense of guilt or emotional paralysis that leaves me on the sofa. In a way, has become a comfort that as I keep going, there are always memories that keep my loved ones close. They are not always good memories, as in Ben’s going into the hospital, but I will say that more of the love stands out than the bad times or crises.

I have occasionally been told that writing my blog posts keeps me in the past and in grief. I disagree. As I revisit previous posts and look back at how I coped with the milestones over the years, I see that there has been a shift in my thinking and in my embracing of life. I see that I have made strides and have come through my experiences knowing that although my confidence is not strong, Christopher Robin was absolutely right that “You are braver than you believe, stronger than you seem and smarter than you think.”

I hope that this post serves as some comfort and encouragement to anyone experiencing grief. Our timeframes and strategies for coping may vary, and we will probably always navigate unexpected ups and downs, but the memories and love always remain in our hearts.

Dorie and I in Skaneateles, NY

 

Happy Stitch Day! Old and New Memories!

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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. 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.

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 because it was a long commute from our own hotel and I didn’t want to tire Ben. But, he 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. I will never forget the magical connection that Ben and I felt when we were at Walt Disney World.

July 2014, Breakfast at the Polynesian Hotel.

Stitch gave Ben some extra love!

Making new memories at Walt Disney World 2019

Happy Stitch Day!

With Love For My Dad on Father’s Day

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Each year, it is with pride, love and sadness that I write about my dad on Father’s Day. Much of what I write is the same. Still, the memories bear repeating, as they live within me and honor my dad. 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 itself does not really bring me down. After all, I already miss him. The hardest part of holidays like this is the reminder that the people 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. But, 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. Believe it or not, he was not a huge fan of Disney or animation, but when I showed him videos of my Walt Disney visits with Ben, he beamed because he said he loved to hear me laugh and happy.

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.

My dad and I spoke several times a day. He even called my cats! He was a very good Grampa to my first cat, Tiffany, and then, to Disney, and he spoiled them just as he spoiled our dogs. I knew that when I went out, I would come home to a message on my answering machine with him calling my cat to say that it was a grave injustice that Mommy left her alone. They even got packages of treats and toys, addressed just to them! Even six years later, I miss that. I tell Tinker Bell about her Grampa and that he loves her from heaven. With all of the chaos in the world, I miss getting his perspective, particularly given his extensive knowledge of history and the military. When my aunt, his sister, asks me what Daddy would say about the state of the world, we agree that there would have been many phone calls and there would have been a lot of yelling. I know that what is happening would have devastated him- he was a proud Marine and a patriot through and through- so I’m grateful that he’s not dealing with it, but I miss the comfort of his explanations. I did trust his judgment on world events. 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!

This year of teaching remotely has brought families into my virtual classroom. Despite the struggles, I found it heartwarming and fun that many parents, grandparents, siblings and cousins listened to the lessons and chimed in with their own memories and thoughts. I think about how Daddy’s caring extended to my students. The reality for some students is that their families are not involved in their education and they certainly don’t talk about their classes. I often joked with the kids that my dad worked harder to learn Spanish than they did, watching the Spanish television stations and calling me to clarify what things meant. I let them know that he pitched in funds for art supplies that we used in our projects. When I told him about students who couldn’t afford graduation activities, he was right there to help. Although I didn’t talk much about his condition and experience, my love for my dad was obvious and they knew when my absences were due to his having a medical procedure. I was always moved when parents showed up at parent conferences asking how he was. That was my dad and it has become a part of me. I like to think that his example has stayed in the hearts of my students, too. I firmly believe that compassion and love are more important lessons than properly conjugating a verb in Spanish.

I’ve been looking through old photographs because they do bring me joy despite some tears. It’s hard to find photos of my dad and me together because he was usually the one taking the photos. He loved capturing silly and sweet moments, often with our dogs. When I look at some of photos that he took, I know exactly what he was thinking, or what joke or prank he had in mind, and that, in itself, makes me smile. Daddy had the best giggle, which was kind of funny for a USMC!

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 will try to remember that Daddy never wanted me to be sad. 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. Since he was quite a character, a lot of nurses blessed me for my patience, which always made me laugh. I can’t even imagine his frenzy over the coronavirus. I still can’t shake the thoughts of how I would have managed caring for him and for Ben if they were here.

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

When Ben was ill, despite fighting cancer, my dad never failed to think of how he could help Ben. I think that on a certain level, he felt connected to Ben because they were both facing death. But, the gadgets that my dad found to make help Ben with dexterity were so genuinely appreciated. I was always surprised to find that Ben called my dad to check on him and to chat, but my dad became Ben’s dad, too, and that, in itself, is a special memory. Daddy called Ben a gentle soul- I think they were both gentle souls. I wish I had a photo of the three of us.

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. 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!

 

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