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 did not really bring me down. After all, I already miss him. Last year, Father’s Day hit me harder because with the loss of my dad and then Ben, I realized 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.
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 four years later, I miss that. With all of the chaos in the world, I miss getting his perspective given his extensive knowledge of history and the military. When my aunt asks me what Daddy would say about the state of the world, I know there would have been many phone calls and there would have been a lot of yelling. I know that what is happening would have eaten his heart out, so I’m grateful that he’s not dealing with it, but I miss the comfort of his explanations. I was a Daddy’s girl and I did trust his judgment on world events. I certainly can’t trust our current administration. 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!
I’ve been looking through old photographs because I do take great comfort in that, 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, is a joy.
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. And, since he was quite a character, a lot of nurses blessed me for my patience, which always made me laugh. He 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.
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.
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!
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.
It was just last weekend, on Donald Duck’s birthday, that I wrote some reflections about my experience with grief in the nearly three years since Ben left this world. Today, I made some new observations. Classes ended yesterday in NYC public high schools. Today, NYS Regents exams began. I’m on the late proctoring schedule, and since I am devoted to my Fitbit and daily walks, I decided to walk to school, a little more than four miles from my apartment. It was a beautiful day, not yet too warm (I do not like summer heat).
As I do every morning to begin my day, I put on my playlist of “Ben songs”- songs that were important to him and to us. Then, I listened to the Beatles album “Hard Days Night.” Ben loved the Beatles and I have developed a strong attachment to their music because of him. After all, the first time we ever danced together was to “Twist and Shout.” Maybe not the most romantic song, but there was magic when we danced that first time.
As I walked to school, I thought about Ben and how life has changed since my caregiving days. Today, I woke up at my regular time and had the luxury of deciding to leave early enough to take more than an hour to walk to school. When Ben was here, I still would have been happy to have extra time because I could have stayed with him longer and not have had to rush through getting him set for the day. When he did have a private caregiver, on a day like today, I could have stayed home until she arrived, so neither of us had the anxiety of his being alone for any amount of time. Right now, it’s all about me, and, to be perfectly honest, I’m not so comfortable with that.
Although it’s close to three years since I lost Ben, my mind still quickly reverts to my caregiving days and memories of my schedules. When I’m thrust back to those days, it sets into motion a kind of movie in my head about the chaos of juggling work and caregiving. Then, I seemed never to be able to walk at the right pace, or fast enough, to get where I had to be. I continue to replay the following scenes: the panic of Ben being alone; constant texting to check on him; receiving an urgent text from him that I needed to rush home because he needed to use the commode, and then comforting him if I didn’t get home in time; getting his “10-4” or “copy that” texts after I sent an update; walking through the streets with my phone in hand just in case something happened (for a while, it could have been my dad or Ben).
The movie in my head did not make me cry today. It didn’t even unnerve me. It does not feel like a setback. I find that I am so keenly aware of Ben’s absence, and yet, of his constant presence. I don’t feel the same guilt about my “freedom” that I initially felt. However, sometimes I wonder if I will ever really be free, because I am so tied to those memories.
As Rafiki said, “The past can hurt. But the way I see it, you can either run from it or learn from it.” Maybe I have reached a point where I realize and can embrace that certain seemingly mundane or small events- even a shift in my daily activities like walking to work- will always remind me of Ben and our ALS days. Maybe these memories are becoming a kind of comforting reminder that despite the very ugly struggles of Ben’s brave battle with ALS, my caregiving days and our relationship during that time were incomparably and indefinably loving and meaningful and that now, Ben stays with me, even as I keep walking forward and looking for my new right pace.
Donald Duck’s birthday prompted me to revisit the post I wrote on this momentous occasion last year. At the time, with summer vacation right around the corner, I was propelled into the heartbreaking memories of debating with Ben how his caregiving would be done when school let out, and having those arguments negated because the summer of 2015 was spent at the hospital, where Ben ultimately succumbed to ALS. Those difficult memories have cropped up again as summer approaches. Since I read last year’s post, I have been reflecting on how my grief has shifted over these three years.
In 2016, as the first summer without Ben approached, I felt overwhelmed by the devastation of reliving every moment of time leading up to and including Ben’s time spent in the hospital, in which the end of summer coinciding with the end of his life. Of course, firsts are always difficult. I was consumed with worry about how I would feel during my first summer in many years without any caregiving responsibilities and without school as a distraction. Caregiving was pretty much the only thing on my mind, so I compiled my journal of Disney quotes and started writing this blog, which was actually very helpful as I sorted through the experience. It gave me a sense of purpose to think that maybe my words and experiences would help other caregivers. This, in itself, was an enlightenment. Although I wished that Ben had never had ALS and needed me as a caregiver, I found that I am a caregiver at heart and I am most content caring for and helping others. Unfortunately, sometimes this has proven to be a convenient way to avoid taking care of myself, but that’s a whole other blog! Since going to the theater is my favorite activity, I got tickets for all of the Broadway shows I had been wanting to see. I was excited at the prospect of seeing the shows, but, once there, I found that I could not truly enjoy myself. I missed Ben. I felt guilty about doing things that I couldn’t do when I was taking care of him. I had a lot of guilt about living my life when he was no longer here and we couldn’t not enjoy our life together. Although I had the freedom to do things, I did not feel the zest of “reclaiming” of my life that people told me I should feel. I wanted Ben to be here. I socialized more, but Ben was really the only thing I wanted to talk about. After outings, I often returned home in tears because home was so lonely without Ben. I went through motions, trying to convince myself that I was doing fine, but fighting myself often led to feeling worse. The fact was that embracing my life felt daunting, wrong, and somewhat impossible.
I spent that first summer dreading and planning how to spend the first anniversary of the day Ben left this world. I decided to make a video tribute to Ben for the blog and I pored over our photographs and videos. It kept me very busy and made me feel good to do this for him, for us. I bought a couple of computer programs to help me with the task, taking pride in the knowledge that Ben would have appreciated my mastery of the software. The anniversary day came with many tears and my keeping a low profile, except for sharing the video with friends, family and some of the special people who took care of Ben. I remember that the day after that anniversary was almost worse than the actual day. I spent so much time bracing myself for that anniversary, anticipating the sadness, making a plan to honor Ben. The next day, I was lost and I was miserable. I was unsure of how to act. Would people not want to hear about Ben and my grief anymore because that one-year marker had passed? What was appropriate in terms of talking about him? What was “healthy?” I knew enough to ignore the people who told me what I “should” or “had to” do, but I didn’t have any answers of my own. I’m a person who wears my heart on my sleeve, and I just had to let my life unfold, understanding that there would be good and bad days ahead.
The second year passed- I became more immersed in supporting other caregivers, particularly those caring for people with ALS, through my blog and various online support groups. I embarked on a certificate program to become a caregiving consultant. I did a lot of reflection and realized that I am most comfortable defining myself as a caregiver, so losing my dad and Ben also signified the loss of much of my identity. In many ways, the second year of grief was harder than the first, because the first year becomes such a fog and the loss is new and raw. In the second year, it seemed like I felt the sadness more intensely. Since I had formed some new routines, when a wave of grief hit me and threw me off course, I had a very hard time getting back on track. There was a constant loneliness, even though I was surrounded by people whom I love and who love me. I assessed everything I did, trying to prove to myself that I was respecting Ben, grieving appropriately, and coping well with life. The truth was that although I was active, going to the theater, seeing friends, writing, volunteering, and I even created a profile for online dating, I was also floundering. I was tiptoeing in the world of the living without really delving into it.
It was during that second year, last June, when I wrote Donald’s birthday post, and I could not shake all of the memories of the summer of 2015, when Ben went into the emergency room and everything changed. I found myself wondering if I was grieving too much, crying too much, dwelling on Ben too much. Still, I was determined to have a productive and positive summer and take grief with me. I made plans to travel to spend time with good friends, something I had not been able to do for several years. I was excited about it, and I did have a wonderful time, but Ben still had a huge presence. I talked about him frequently and kept him close, which sometimes made me miss him even more. I even bought things simply because he would have liked them, bringing them home only to face the obvious truth that he was not really here to enjoy them and then dealing with another setback. But, I have only come to understand in retrospect that I could not venture forth without him.
On the second anniversary of his “leaving,” as he called it, I reposted the video I made the year before. I decided to stay home and keep a low profile. Sadly, as it turned out, I had to attend the funeral of my best friend’s mother, who was often like a surrogate mom to me. It was a day of loss and tears but also of thinking of good times.
This year, heading towards the third anniversary of Ben’s passing, I am facing the summer with less dread. I still think of this time of year in terms of the markers of Ben’s battle with ALS, and I drift back to those memories and give into the bouts of sadness, but as Dory taught me, I just keep swimming. I accept that this time of year will probably always have a tinge of melancholy. However, with more enthusiasm and confidence, I once again made plans that I am looking forward to. I do not feel the same level of guilt about enjoying my life, although I still grapple with the knowledge that adventures would be better if Ben was still here. Some of my plans include things that Ben and I wanted to do together, like a penguin encounter at the Georgia Aquarium. I’m a little wary about it because it stands to be emotional, but I also want to honor our relationship and the things that were special to us. I guess the positive thing is that I am not letting grief or guilt hold me back from living. I am not yet comfortable being on my own, and still often refer to Ben and our life, but I am out in the world having new experiences. Maybe on some level keeping him so close keeps me in our relationship, but I fully believe in my heart that Ben is always watching over me, which gives me comfort. But, I am also creating new wonderful memories. I am not worrying- at least not yet- about how I will spend the third anniversary of Ben’s leaving. I have come to realize that I cannot plan my emotions. The day may be easier or harder than I anticipate. I will let my heart guide me and not fight myself. There will be no right or wrong about what I choose to do or not to do. As I reflect on the past three years, I see that I have learned to coexist with grief as I respectfully give grief its time.
I would not have predicted that Donald Duck’s birthday would provide an opportunity for reflection and insight into my grief, but reading my post from last year and once again poring over our photographs, with a combination of smiles and tears, let’s me know that I am doing ok. I still cry, I still feel sadness, I still miss Ben, and I am okay with that because those feelings speak to the wonderful times that we have over sixteen years.
Donald Duck hangs out in the Mexican pavilion at Epcot but I don’t know how much Spanish he spoke!
The Disney magic must never be underestimated. When we were at Walt Disney World, Ben and I stepped into a carefree fantasy that helped us to, at least momentarily, transcend the challenges of ALS. Our photos, some of which I share here, were so important to Ben as his ALS progressed. He loved to relive the healthy days, but he also examined his physical changes as a result of ALS. The photos were essential to me in the early stages of grief, particularly when I wanted to keep him as close to actually being with me as possible. They remain a treasured and positive part of my dealing with the rough times of missing him. I never lose sight of how lucky we were to have a special love and to share this love of Disney that always shed much needed pixie dust on our lives. Donald is part of those special memories that comfort me.
So, with gratitude and joy, I say Happy Birthday, Donald Duck.
Yesterday, I wore Ben’s Lou Gehrig Yankees jersey to school. I have made it a tradition to wear the jersey once a year during ALS Awareness Month. The jersey is significant to me because when Ben asked me to get it for him when was diagnosed with the disease. He wanted to be a fighter like Lou Gehrig. Ben barely got to wear his jersey, but now I have adopted it and I feel proud and especially connected to Ben when I wear it. This year, going on three years since he left this world, I did choke up in one class as I briefly talked about Ben and ALS, but it’s okay if the kids see me being human.
My students expect to see me in a Disney t-shirt when I’m dressing casually or during our themed dress-up days. They are shocked but thrilled to see me in a sports jersey. They run and ask me if I am a Yankees fan. I smile and shrug. Of course, they look to see whose number and name I’m wearing. Immediately, I get the question, “Who is Gehrig?”
The first year that I wore the jersey, one of my middle school students asked me why I wore this particular jersey with the name of a player he did not know. I said that my husband had the same disease Gehrig had. He asked about it and I asked if he ever heard of the Ice Bucket Challenge. He did, but he did not make the connection to a disease. I told him the Challenge was to raise money to find a cure for ALS/Lou Gehrig’s disease. Trying to make sense of it, he asked if it was a disease where people were cold all the time. It made me smile then and it still does. If only it were that simple! They are young, they do not need a lot of details. Some will ask many questions, some will Google it, and they will learn. And, that’s a good thing.
I’m dedicated to taking the opportunity to raise awareness of ALS because Ben’s and my experience with ALS truly is never out of my mind. The students that I had while my dad and Ben were alive and ill learned about compassion when they saw me run out of school in tears in a panic because of an emergency, or when they listened to me explain on rare occasions that although I never use my cell phone in class, I was awaiting an important call from a doctor. And, when my phone rang, they were silent, and I know that many felt my worry. Some were sympathetic and compassionate. Those are life skills you cannot gain from a text book. They are important. Some kids do not learn this at home.
This year I am in a high school and the kids had many questions about ALS. We talked about how Ben had to have all of his food pureed, how if his hand slid off of his computer mouse that he had to wait for me to reposition it so he could type, how we sometimes had to spell out entire sentences, letter by letter. It was the inability to communicate that struck them the deepest, which is perhaps why the Project ALS Don’t Talk-a-Thon is so resonant and important. Mostly, we talked about having compassion and not making assumptions about people with disabilities. Some of them sat in stunned silence with their mouths open, some had questions about feeding tubes and ventilators, others were uncomfortable talking about anything sad. One student, who is going through her own family issues with illness, jumped out of her seat and hugged me. It was an emotional and unifying feeling for the class and I hope that feeling fuels the way they treat each other, particularly during difficult times. I think it does, because today, some students asked if I was feeling better because I must have been sad thinking about Ben, while others said that they spent a lot of time thinking about things that I told them.
Ben wanted to fight ALS, and he did, very bravely. Now, I fight to advocate for awareness and to support efforts to understand and work towards a cure for the disease.I may teach Spanish, but my class encompasses cultural understandings and often addresses issues of understanding and interrelations within the context of holidays and current events. I dedicate this small amount of time to proudly raise awareness of ALS and all it encompasses. While I love to see the students’ glee from seeing the klutziest, Disney-est teacher in school wearing a sports jersey, they are also learning about a man named Lou Gehrig who had a terrible disease that my husband had, too. They see how their teacher has a “real” life in which she cared for and lost her loved ones, experiences grief and continues to live and love and care for her students on our good and bad days. Life lessons. You don’t get those from textbooks.
Today is Memorial Day, and on this day I honor my dad, Jacob, who left this world on February 2014. I salute my dad and all the men and women who have served this country. Of course, Memorial Day is to honor those who died in service, and mercifully, my dad did not. However, he often reflected on friends he lost during the Korean War, and this day was important to him, as it should be to all of us in this country.
My dad was a boy in Brooklyn during WW2 and loved to tell stories about the neighborhood. This was a picture he had of my grandfather and neighbors. When I look at it, I can hear my dad’s cute giggle as he told this story: There were concerns that we would be bombed and these gentlemen were the team that was tasked with extinguishing fires in the case of a bombing. My dad never stopped laughing as he pointed out the little bucket, which would need constant refilling, and the short hose that would not reach very far, clearly not the most effective method for dealing with the situation!
Brooklyn, sometime during WW2. My grandfather is the second from the right. Look at how proud and serious the men are!
Daddy was such a proud Marine and a real patriot. It upset him that over the years he saw less and less flags flown around our neighborhood. 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 Hospital out in Northport, Long Island 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, which were so different from up here in the north.
Daddy at Mitchel Air Field on Long Island.
The Cradle of Aviation Museum and events at Mitchel Field were favorite destinations for my dad. Since he was trained as a pilot, he loved to see the old planes. I went there with him a few times and although I cannot say I shared his enthusiasm, I loved to see him so happy. And, I felt a lot of pride to see him meeting other veterans and sharing stories of their time in service. I proudly display in my apartment his model of the F7, the plane he flew, along with one of his USMC caps.
In more recent years, Daddy knew the young guys in his neighborhood who returned from deployment. Some of them had trouble getting back into life and my dad was concerned about them. I was always surprised by how much he knew about them, but he took the time to really talk to them. We read a lot about the effects of multiple and extended deployments. My dad understood it well and he felt for these “kids,” as he called them. I learned so much about compassion from my dad.
Daddy loved when people spotted him in his USMC cap and said, “thank you for your service.” He said it to any veterans that he met, too. I had the privilege of meeting many veterans when he was at the VA hospice in Northport. They were proud. They had many stories. And they were still fighting for their lives, in a different way. They were patriots and they inspired me.
You could take the man out of the USMC but you couldn’t take the USMC (or the camouflage) out of the man!
Not a day goes by that I don’t think of and miss my dad. I miss his laugh, his kindness, his advice, his sense of humor, and his history lessons. I have to admit that I’m glad he’s not witnessing the current events in this country. He’d be devastated and frightened for my future and the future of the next generations, and he would also be reminding me that history does indeed repeat itself. I do wish I could call to discuss things with him, knowing that I would be holding the phone away from my ear because he would definitely be yelling!
Memorial Day is a special time to pay tribute to those who lost their lives in service to this country, to make things better for us. It saddens me to feel that our current administration does not really care about making things better for its citizens. But, maybe that’s why it’s even more important to remember those people who did care, to honor and support those people who do, and to reaffirm our love for this country and determination to honor our founding principles.
Semper fi, Daddy! I love and miss you!
A Disney note:
Since I do make Disney connections in most of my posts, I would like to recommend:
Disney During World War II: How the Walt Disney Studio Contributed to Victory in the War is a fascinating coffee table book published in 2014. Although it was published after my dad passed away, I bought the book because it reminded me of my dad and how much we embraced each other’s lives.
Walt Disney Treasures: On the Front Lines, is a 2-disc DVD set, released in 2003, which highlights Disney’s contribution to American military participation in World War II. This collection contains 32 short films used for training, propaganda and education. This set also contains the feature-length Victory Through Air Power, a propaganda film not released since its 1943 theatrical debut. My dad was always amused at my ability to find this connection between my love for Disney and his love for WW2!