A PhotoPass photographer caught this moment in front of the Castle at Walt Disney World. It was actually the first time we returned after Ben’s ALS diagnosis in 2010
For me, today, July 6, will always be the day everything changed. It’s not a typical milestone date. No diagnosis, no birthday, no death date, but the day that Ben went into the hospital. Dates are important to me, for better or for worse. One of the many reasons this date is so significant is because it became the day when we could no longer deny or postpone Ben’s fate with ALS. So much happened leading up to this day. I’ve documented it often, and you can click here to see the details of that date. When choosing a quote for this post, the unwavering feeling is the song from Bambi, “Love is a Song That Never Ends.”
As a teacher, the end of June and beginning of July is a happy time. This year was particularly challenging, so I was more exhilarated than usual to leave the school building. I am trying to focus on the future, because I have put in place exciting prospects. Still, the memories of that summer nine years ago are like Eeyore’s gray clouds. I don’t relive each and every detail anymoreI allow myself to feel the sadness, grateful that it is no longer as paralyzing as it once was. I also continue to reflect on that time—where I was, where I am, how far I have come (or not).
Today, I happen to be home with a bad cold and laryngitis, so writing, remembering, and reflecting are perfect activities. Tears have fallen, and that’s fine. I will watch my “One Dance” video and listen to the lyrics, remembering how that song was the one that allowed me to acknowledge to myself that Ben was never coming home from the hospital, that we would never dance again, and that he was going to die. Yes, that may have been obvious to everyone else, and it is not that it was not obvious to me, but being alone and facing that in our apartment was a terrible heartache. An important message for me in the original Inside Out is that we can aim for joy, but it is not that simple, because our experiences are comprised of so many emotions and moments of significance, and sometimes joy arises from or coincides with anguish in unexpected ways.
Making summer plans had become a conflict of grief and wanting, or knowing that I should want, to move forward with my life. I made my plans with a clear conscience. I have no rules about my grief anymore, and I embrace it when it appears in good and bad memories. I will visit friends, human ones and my animal buddies at the Georgia Aquarium. I have again become accustomed to traveling by myself and I appreciate my good friends. I am also comfortable with wishing that one day, I will have a new love for company. I still don’t act on those wishes, leaving it to the fairies to deliver to me. But, I am living. Ben is always with me, and that’s okay, too. In fact, I wouldn’t want it any other way. After all, “Love is a Song That Never Ends.”
July 2024 calendar. Slightly different arrangement but same photos and memories. I guess that’s a good analogy for grief- the memories may shift somewhat but they are still there and strong.
There are some Disney film quotes that linger in my mind. In the live action Cinderella, the narrator, who is Fairy Godmother, explained that after Cinderella’s mother passed away, “Time passed, and pain turned to memory.” I struggled with this for a long time because the pain was palpable and hardly fading into memory. In my mind, referring to it as a memory meant I had to dig a bit to conjure it. Now, it has been ten years since I lost my dad, and this summer will mark nine years without Ben. Although I still cannot say that pain turned to memory, I realize that I do not live in the pain any longer. Today, I realized that living at more of a distance from that pain makes harsh memories of those days extremely difficult. Setbacks throw off the balance I have achieved in my coexistence with grief and I’m back in the memories.
If you regularly read my blog, you know that theater is my favorite activity and my treasured escape. Today, I attended a play called Mary Jane, by Amy Herzog, and starring Rachel McAdams. It is the story of a single mother who is the caregiver for her baby son, Alex, who has Cerebral Palsy. We never meet Alex, who is on a ventilator, has seizures and seems to be nonverbal. The play revolves around Mary Jane’s conversations with various people, including nurses, doctors, strangers in the hospital, and a chaplain. It is a beautifully done play and it is very emotional. I knew it would be difficult for me to watch. But, I needed to see it and I wanted to support it. It was not an escape. It was a step back into my own experience. I made a point of going by myself so I could be alone with my thoughts, my tears, my recollections.
I could instantly relate to watching Mary Jane go from one challenge to the next, often with a smile, and always as an advocate. Hearing people tell her to take care of herself and watching her take it in and not even reply brought me back to my own reactions to advice I knew was heartfelt but that I also knew I was not going to follow. I had to force myself to focus on the play because my mind jumped to my own still vivid interactions. I was very fortunate to have a majority of wonderful people tending to my dad and Ben. Still, I learned to use my voice to ensure their good care, something that did not come naturally to me at the time.
Grief remains enigmatic to me. I never know exactly what will spur a setback. I knew that this show would bring tears. Indeed, it was a tragic story and I empathized on a deep level as Mary Jane dealt with her son’s episodes and emergencies. It was a scene with music therapist that hit me the hardest. Mary Jane is at a breaking point when a music therapist came by after the baby had a medical procedure, so he was sleeping. The music therapist explained that she wouldn’t be able to come back later that day and wouldn’t be at the hospital for another few days, when she couldn’t promise that she could return to see Alex. This was the one thing that Mary Jane simply couldn’t accept because she said that Alex was looking forward to this. In speaking with Mary Jane, the music therapist said that it was possible that Alex was conscious enough to hear the music, and she played a song. It soothed Mary Jane as much as we want to believe it soothed Alex.
Of all that happened in this play, this interaction, and the mention of music, affected me intensely. At one point, Ben had a crisis and he had to be intubated. It was terrifying, and in order to cope, as I stood outside the room, I tried to shift my focus to how fascinating it was that they converted his room into a kind of operating room, with people and equipment quickly moving in and out. Afterwards, I sat with him as he slept. When a nurse came in to check on him, she told me that although his eyes were closed and he wasn’t entirely awake, he could probably hear me. I remember being overwhelmed with a feeling of helplessness and I burst into tears. The nurse hugged me, and I asked if she thought he would hear music. I had brought his iPad to the hospital so he could listen to music. The nurse encouraged me to play the music, which I did. I remember asking Ben if he heard me and he nodded slightly. I asked him if he wanted to listen to the music and he nodded again. Music was always a driving force in Ben’s life, and it proved to be an important part of his hospital experience, too.
When Ben was first admitted to the hospital, the palliative team asked about his interests and I told them music and computers. At the time that this crisis occurred, we had not received a visit from a music therapist. However, when he was transferred to the ICU after an emergency intubation, a music therapist visited the ICU- which was unusual- and cheered Ben with guitar music. He even played some Beatles music, which Ben loved. Ben enjoyed several visits from music therapists, and the guitarist even played for him at his bedside on the day he separated from the vent and left this world.
After the play, I walked home with my thoughts. I listened to my “Ben Playlist” of songs that were important to us, some of which were played on the day he died. I gave myself permission to feel the grief. I was grateful to be by myself. I did not want to hear any other opinions, or comfort, or suggestions of what I “should” do or think.
As stressful as it is to revisit those days, I always come back to that as awful as it was, there was so much love and caring. As Iago said in Aladdin: The Return of Jafar, You’ll be surprised the things you can live through.” The pain of those days is now tempered with perspective. The pain may be a memory, but it is easily summoned and, on days like today, it lingers. I do not avoid the memories, or even the tears. That experience has impacted my life and taught me a lot about myself. Feeling the grief also lets me know that I have grown and moved forward. I’m grateful to be able to articulate my feelings here, and also grateful when I hear from people who relate and then want to share their own experiences. We have the experience of caregiving – and sometimes grief- in common, and it is okay to feel, internalize, and grieve differently.
I could not have seen this play when I was entrenched in caregiving. In fact, I avoided anything that was at all sad for a few years after I lost my dad and Ben. Now, I’m ready. I felt compelled to see this play to honor my experience but also to support art that puts the spotlight on caregivers and the caregiving experience. Not long ago, I wrote about another play that I saw about caregiving, called Cost of Living, by Martyna Majok. (click here to read that post) This play also left a lasting impression on me. There are more than 53 million caregivers in the United States. They have stories that need to be told. I am so grateful for the artists who bring these issues to life.
Thank you for reading my stories. Caregivers, tell your stories. You matter.
Today, the anniversary of the passing of my Grandma, Dora, rounds out the awful month that February is for me. If you follow my blog, you know that my dad’s birthday was February 15 and day he died was February 13. Ben’s birthday was just two days ago. My cat Disney died on February 7. On Valentine’s Day I marked three years since the passing of my Aunt Eleanor. Since Grandma’s birthday is coming up, and things have been rough with these milestones, I want to respectfully acknowledge this date and my love for my grandmother, but I will wait until March 5, her birthday – at least a happier date – to share more about her.
I grew up in a house with Grandma. I was with her in that house when she succumbed to cancer. We were extremely close, knew the best and worst of each other and loved each other unconditionally.
Grandma is a part of so many memories, and of much of who I am, and for that I am grateful. Just as Gramma Tala told Moana, “There’s nowhere you go that I won’t be with you,” I know that my Grandma watches over me, proud of my baking and that I have brought others some joy with the recipe that her mom taught her and she taught me. Given my lack of interest in religion, she would be especially touched that I continue the cultural tradition of making humentashen and have even experimented with new flavors. She would be tickled by my newfound skills at cookie decorating, too. We shared a love of fashion and although I have not crocheted any clothing, I know she would love the little critters that I crochet. I believe that mostly, Grandma would be delighted that I always feel her with me when I do these things, and that I often talk about her importance in my life. I cannot deny that it makes me sad that all of the people I loved the most are carried in my heart instead of actually here- February really brings that home- but I still feel fortunate to have known so much love and it’s a comfort to know that they are always with me.
I am thinking of you today, Grandma. You are always in my heart and I love you and miss you.
Today is Ben’s birthday. Just one more lousy milestone date in February. I have found it helpful to make a plan that acknowledges the day and honors Ben, and that gives me the flexibility to go with whatever I end up feeling. On my Ben milestone dates, I have found that being on a train, though bittersweet without him, also provides the comfort of good memories and thoughts of him. Ben loved travel by train and we took some lovely excursions. I will always lament the time stolen from him and from us- the many journeys we would have taken- but I have accepted that he will travel with me in my heart.
I have been working diligently on my writing and decided to take myself on a little two-day retreat in Beacon, New York. It is a place I have wanted to visit- I love quaint towns- and where I thought I would be able to relax. Ben’s birthday always falls during our school vacation, so the timing of this getaway was perfect. I scheduled my return train for today.
My view from the train, as Ben would have captured it.
My goal was to spend time enjoying the scenery and taking in the inspiration to work on my picture books. I also had a book to read. I resolved that I would not be harsh with myself if I was not in a great frame of mind, distracted by my February blues. But, optimistically, I looked forward to the change of scenery, because I have found that conducive to writing.
I booked a room at the Roundhouse Hotel, with a beautiful view of the town’s creek and little waterfall. It was lovely. All night I could hear the water. Ben would have loved it. It was difficult to move beyond the despair of those thoughts. I am grateful that I am a person who has no problem doing things on my own. Actually, I enjoy spending time with myself. Still, I felt a little alone. I was saddened by missing Ben and the weekends we will never have, as well as the thought that I might never again have romance and someone special with whom to travel.
The view out my window.
Walt Disney said, “The way to get started is to quit talking and begin doing.” In the past year, I have made a lot of strides in my desire to write picture books. I even formed a critique group. This retreat certainly acknowledged my love for Ben and acknowledgment of the date, but, here in the present, it was also part of my “doing.” I kept my focus on reading and writing and how fortunate I was to have a beautiful view from my window and a sweet town to explore. I brought my book with me to read in cafes and at meals. I was sure to be back in my room to have plenty of time to write in the late afternoon and evening. As it turned out, I made great progress with my stories, not only working on one that is in almost final form, but also developing two other ideas.
Today, I woke up and wished Ben a happy birthday. I felt his presence. When I took my seat on the train, I put on my headphones and played The Beatles “Birthday,” as he always played it for me. Then, I listened to our favorite Disney instrumental albums, gazed out the window and also finished my book. It felt right. As right as life can be without him.
Returning home to the cocoon of my memories is also retreating to the way I have previously coped with my grief. My go-to on days like this is watching the videos that I created of Ben moments, and watching Ben’s favorite films. As I write this, Monsters Inc. is playing in the background. I do like these moments of communing with my memories, even if they bring tears.
Don’t we all wish we had that chip to reunite us, if only for a moment?
I am always most moved by the scene where Mike gets Sully that one missing piece of Boo’s door that allows him to reunite with Boo. I wish I had that little piece of a door. It seems that these milestone days open the door, but I am reminded that my loved ones are not really there. Just the memories. They simply are not always enough. Especially in February, when that’s all I have.
February will likely always be a melancholy month filled with the sorrow that all those beloved people are gone. Still, I must find the pixie dust. In Up, Ellie left a final message for Carl that said, “Thanks for the adventure. Now go and have a new one.” I wanted to have a little getaway and to have some time to work on my writing in a different venue. In fact, that was a positive experience, and I am already thinking about my next little self-care and creativity getaway. It is a reminder that, as Joy and Sadness learn in Inside Out, sometimes joy arises from or coincides with anguish in unexpected ways. At least I know I have a huge cheering section of grim, grinning ghosts.
Happy Birthday, My Mickey! I hope you are singing and running, banging on drums and playing the soprano sax, eating everything your heart desires. I love you “To Infinity and Beyond.”
Today marks 10 years since my dad, Jacob, left this world. Not a day goes by that I don’t think of and miss him. I miss his laugh, his kindness, his advice, his sense of humor, and his history lessons. He was a proud Marine, and a real patriot, and I’m glad he’s not witnessing the current events in this country. He’d be pretty devastated, and he would also be reminding me that history does indeed repeat itself.
Right now, we are having a snowstorm in New York City. Schools have gone remote. I am reminded that the day my dad passed away, there was also a snowstorm, and it was worse than what we are seeing today. I had called the hospice to check on him because he did not answer his phone. As it turned out, the staff was about to call me because his “status changed” and he did not have long. Unfortunately, the storm knocked out all modes of transportation. No trains, no buses, no car service. I had spent almost every day with him, had taken family medical leave, and although I returned to school a few weeks prior, I was at the hospice on weekends and talked to my dad several times each day. I was utterly devastated that I could not get to him on this day.
The nurse put the phone to his ear and I told him how much I loved him, that I would miss him, that he was the best dad. I also told him that if he had to go, it was okay. He was not conscious, but I have to believe that he heard me. I gave him the permission to go that I’d always read and been told is what should be done. I left school for home, to get Ben situated in case trains began to run again. As I walked through the door, the phone rang. My dad was gone.
Ten years have passed and this remains a vivid memory. I always wonder with milestone dates, if I am where I should be. I don’t know. Since animals- especially our dog- were so important to my dad and to our family, the quote that resonates today is, “Goodbye may seem forever, farewell is like the end, but in my heart is a memory and there you’ll always be.”- Widow Tweed, The Fox and the Hound. My memories are very important to me. I relive them often, and I’m sure that some people would tell me I live too much in those memories. I guess I am glad that I have gained a comfort level with my ways of grieving and I am able to dismiss a lot of opinions. I am grateful to have had a strong relationship with my dad and I take that with me everywhere I go. I always will. Despite the sorrow that does still weigh me down, my experiences and memories with my dad and Ben have shaped these ten years in positive ways. I like to believe that my dad would be proud of me and it is always a driving force in my endeavors.
February is a lousy month. Tomorrow is Valentine’s Day, but it is also the day my aunt Eleanor died. Thursday is my dad’s birthday. My grandma died on February 23. So, for now, I want to sharethe notes I shared with the Rabbi from the hospice, who conducted my dad’s funeral. These show my dad in life. Daddy would say he did not want any attention, but he deserves it.
My dad was a one-of-a-kind. He was so funny, so kind, so generous, but he liked you to think he was Archie Bunker. I don’t think he ever knew or believed how loved he was.
He was such a proud Marine. He wore his USMC cap so proudly and loved to run into other veterans and share stories. But I was his Private Benjamin. The first time I drove him to the VA out in Northport he just shook his head when I clapped and waved as the guard at the gate saluted us when I flashed Daddy’s VA card. Daddy saluted, shook his head and laughed. Although he was not an observant Jew, his Marine Corps experience, where he was one of 3 Jews, gave him a sense of pride in his religion and he did not tolerate any discrimination, gaining the nickname of “that crazy Jew” because he would fight anyone who even looked like they were going to say anything derogatory. He trained down south during the days of segregation, and he remembered with sadness and contempt the way he was not allowed to sit on the bus with his African American USMC buddies and how disgusted he was by those attitudes because it was so different than up here.
He lived and breathed dogs but really loved all animals. When I was a little girl we used to read the Dog Breed book all the time. I knew every breed and I used to say that I couldn’t be Daddy’s daughter if I could not identify every kind of dog! But, he took great pride in his dogs and Schnauzers were our breed. The whole neighborhood knew my dad as Dulcie’s dad. And we all lived by the motto of “love me love my dog.” He was delighted when a group of kids told their sister, who was afraid of Dulcie and making a bit of a scene, to “go inside if you don’t want to play with Dulcie” instead of telling Dulcie to go away. When he was selling our house, a real estate agent brashly told him to put the dog outside. He told her she could stand outside but the dog lived there. She left and never came back. My dad was fine with that! He used to leave messages for my cat when he knew she was alone and let her know that it was a grave injustice that her mommy left her alone.
He was so proud of me and excited that in 2010 I finally was able to launch my dream pet souvenir business and he loved helping me with ideas and business advice. Just last weekend Ben put pictures from a recent dog event I was asked to participate in on his iPad so I could show them to my dad. He loved to look at the pictures and was interested so in my life that he even knew my doggie friends by name.
He had such a good sense of humor and was also a prankster. He got such a kick out of calling companies to review their products or ask questions and having them send him coupons. Once he called me laughing so hard about his call to Uncle Ben’s Rice. He drove the poor girl crazy asking about the measurements, explaining that his mother in law had always cooked for him but now he was on his own. She asked him to hold on and he heard her say, “I don’t know if this guy is sorry that his mother-in-law died, but I sure am!”
He liked teasing my grandmother, sometimes by pretending to sneak into the kitchen to steal her freshly made matzah balls, to the point where she started counting them! To this day when I bake the cookies and hamentashen she taught me to make, I count the number of each shape and/or flavor!
He loved to laugh and to make people laugh. His facial expressions were priceless. His humor made stressful situations tolerable. I remember giving him books on Jewish humor and how he would call me to read some of the jokes, laughing so hard with his cutest laugh. He called me when he was watching our favorite comedies to recount a scene as he was watching it, and his laughter was so contagious that it always made laugh. Some of our favorite quotes came from Mel Brooks’ “The History of the World: Part 1,” “Tootsie,” “Guess Who’s Coming to Dinner” and “Hope and Glory.”
My dad loved history and military aviation. He knew so much about WW2. It was a challenge to find books about things he didn’t know, but he loved to read. I used to call him from Barnes and Noble and read the summaries of the new arrivals to see what he responded to. When there was someone or something that he didn’t know well, I knew I had a winner! Ben and I used to find documentaries for him and Ben would convert them to DVDs. He loved seeing footage he had never seen, and it wasn’t easy to find it!!! And we had many, many discussions about history.
As much as he loved gadgets, he had no patience. While he screamed about the bad instructions, I constructed tv stands and bookshelves. FIOS drove him crazy. I got many frantic phone calls when he could not get the tv to work. Ben and I downloaded manuals with the remote layouts so we could walk him through possible solutions. Ironically, he was a master at his trade in heating/air conditioning and was incredibly good at home repairs, helping neighbors and families with boilers, clearing floods, making heating/A/C decisions. Even from the hospice he gave me the perfect solution for dealing with the radiator and my freezing apartment.
He was like a father to Ben, who has ALS/Lou Gehrig’s disease, and was always looking for any gadget that would make his life easier. And they often do! I never had dinner with him where he didn’t order something for me to bring Ben, who cannot really get out very much at all any more. In the days when we did visit my dad, he would show Ben his gadgets, books and WW2 bullet casings and they would sit and talk about the wars. They both loved it.
I always knew how loved I was and I loved him. We used to speak maybe 5 or 7 times a day, sometimes to share what was on TV, or make each other laugh, or more recently, when he was living alone, I would remind him to eat and see how he felt every time I had a free period at school. Because I was a Spanish teacher he started watching Spanish television and he would call and ask me what words meant. I used to joke with my students that he worked harder than they did. But, it also intrigued them that my dad cared so much about what I did. And that was an important life lesson for many of them.
He was a man who was so devoted to his family. He always said that he just loved to hear my mom and I giggle with my grandmother. He was so proud to send my mom to meet me in England, even though both of us were amazed at her inability to work a luggage cart! He took care of my grandma, his mother-in-law, driving to and from work in Brooklyn to Woodmere to drive her to the beauty parlor, wait for her to be finished, drive her home, and then go back to work. He was honored and almost humbled that Uncle Larry called him every single Friday. He really missed Uncle Larry. There isn’t a friend or a child of a friend of mine that he did not ask and care about.
He was generous and was more comfortable giving than receiving help. He taught me by example to be kind, generous and compassionate and to have a sense of humor. I already miss the phone calls. But I am still talking to him.
