Grief

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

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

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!

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

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!

 

Being like Hercules- Going the Distance in Caregiving, Grief and Life

Disney,Hercules,Grief,Caregiving

Hercules (1997)
Walt Disney Pictures

Disney’s Hercules opened on this date in 1997. It made me think of the Herculean tasks of caregiving, grief and recreating my life. After nearly six years without Ben, I still find myself thinking I am on my way. I can go the distance.  Somehow, I wonder if I will ever get where I’m going and if I will know where I belong if/when I get there.

I think back to caregiving days and I often had to cheer myself on and cheer on Ben and my dad. Ben was actually great at motivating himself. I can picture him singing this song from “Hercules” with a big smile on his face. I still have such great admiration for how he was inventive and determined to maintain as normal a life as possible despite the abilities ALS was stripping away. I was there to help him accomplish his goals, make him smile, and do for and with him what he could not do on his own. Although it was heartbreaking, and at times very tense, we did have a lot of laughs. But, he really did strive to go the distance, right up until he left this world. I remain in awe of his bravery and strength.

My dad was another story, spending seven years counting down to his impending demise. We joked about his negative attitude, but at times it did drain and frustrate me to the point of tears. I was his cheerleader, and it did give me immeasurable joy and satisfaction to hear from him and from so many people that I was his life. I was a Daddy’s girl, and he was my life, too. My dad loved history, he was a very proud Marine, and he loved to read. I spent much time calling him from bookstores to read aloud book jacket descriptions of new books about World War II. It was hard to find books with an angle he did not know. When he asked a lot of questions about a book I described but concluded by saying that I should not buy the book because, “where I’m going I won’t need books,” I knew I had a winner. Ben and I also found lots of World War II documentaries for my dad to watch, and he and I frequently watched one of his favorite films, Mrs. Miniver. I had to go the distance and be strong to find ways to give my dad strength and optimism. That was indeed a Herculean task!

Living with and succumbing to a terminal illness is indeed courageous. Caregiving, too, requires super powers. When I was exhausted, or feeling downtrodden as a caregiver, I had to force myself to believe that I could be strong and that I could “go the distance.” Sometimes, it was a matter of reflecting on the difficult time that Ben and my dad were having, physically and emotionally. I was the caregiver, but they were the patients. I think back to the times that I just managed to keep Ben from falling, which, given my own lack of coordination, was quite a surprising feat to accomplish, and in those instances, he called me Wonder Woman. He even got me a Wonder Woman t-shirt. Those shows of strength did take a physical toll on me, but every mile was worth my while. I knew that I belonged at Ben’s side. And, in retrospect, I learned a lot about myself in that process. It brings me to my favorite Christopher Robin quote, “You are braver than you believe, stronger than you seem, and smarter than you think.”

Managing grief has been another Herculean task. The ups and downs have been become less jarring, but I cheer myself on, more successfully on some days than on others. I have definitely stepped back into the world of the living again. I am more comfortable in, or better resigned to, my routine of living alone, and I enjoy with less guilt the freedom to socialize and to do things I love, like going to the theater and traveling (with the exception of COVID restrictions). I find peace and inspiration during my strolls through Central Park, where I do see signs of Ben from time to time. Ben remains very present in our apartment in photographs, things of his that give me comfort, and things of ours that bring good memories.

When I think of the future, I still have to convince myself to go the distance. It’s not easy for me to perceive myself as strong, though intellectually, I know that I have shown physical and emotional resilience over the past several years. I have blogged about my memories, and living with my present, but the future remains daunting. I am doing more writing and exploring ideas with regard to caregiving kids, trying to see beyond teaching, which, although rewarding in many ways, is very stressful and a constant reminder of my gut feeling that I was never meant to be in a school building. Then, there is the search for love. My relationship with Ben brought so much to my life, and I do desire to find love again. I believe that Ben would want that for me, too. After sixteen years with Ben, it is very challenging to be vulnerable again. Armed with my Disney soul, I still believe that I can have a happy ending, so, I have to believe that, as with Hercules, I know every mile will be worth my while. I would go most anywhere to find where I belong. I’ll keep you posted…