January 1, 2017. I wish everyone a happy, healthy, and peaceful New Year. I’ve never been one to ring in a new year with lots of fanfare. Growing up, my family and I sometimes went to dinner and a movie, but celebrations were very understated and I liked it that way. With Ben, I loved to cook a fancy dinner and have a cozy night at home. Every beginning of a new year should be filled with promise. Should be.
After his ALS diagnosis, although we never really said it aloud, it felt like there was nothing good to look forward to. Being reminded of time passing is not a great feeling when dealing with a terminal illness. There is no opportunity for a break when you’re a patient or a caregiver, so our routines were not altered during a holiday. I did want Ben to feel that things were somewhat festive, and I needed that, too. Decorating the apartment gave me a distraction but it also gave Ben a distraction, a change in his homebound environment, beauty to look at and whimsy. As his ALS progressed, there were no more fancy dinners, though we joked about my pureed creations. Our many Disney decorations surrounded us in beautiful memories. The ending of one year and beginning of another one came quietly and our only resolution could be to make the best of the time we had.
There was no way to know that our last New Year’s Eve would be December, 31, 2014. But, how wonderful it is that I can look back now and say that it was a very fun night that reminded us of the romantic, fun, and nutty times that defined our relationship. I ordered matching Mickey Mouse and Friends pajamas for us and even for Disney (from Pajamagram.com) Ben always loved the fireworks at Walt Disney World, and I found a toy that supposedly simulated fireworks, with sound effects and LED light “fireworks” that were activated by a remote control. We played the soundtrack to the “Wishes” Magic Kingdom fireworks show and Ben chose the sequence for our fireworks show while we had our photos scroll on his computer. It was pretty hilarious to pretend we were at the Magic Kingdom as we watched these pretty unconvincing fireworks splash on the wall. There is a brief video below. Don’t think it’s the video quality or the color calibration on your monitor, the fireworks really were that bad! It felt almost magical to laugh and enjoy the evening. And, it touches my heart still, that Ben woke up the next morning smiling and saying that he had so much fun. That silly celebration is now part of my treasure trove of beautiful memories of moments sprinkled with pixie dust.
In my previous post, I explained that Auld Lang Syne is very meaningful to me. For last year’s holiday card, I placed photos of Ben at his happiest and most vibrant around the words to that poem. I needed to see that and I wanted people to remember him laughing and enjoying life. I still find that this gives me more peace than sadness. And, in the moments that it does bring tears to look at the pictures and think about the times we will no longer have, that’s okay, too.
Holiday Card 2015 A Loving Tribute to Ben
On this New Year’s Eve, I did a bit of celebrating, which says to me that I am healing. Those feelings can be confusing, because my joy does not mean that I have forgotten Ben or any of my loved ones. Words are powerful, and I do not like healing to be described as “moving on,” because in my mind it means leaving things behind, and I have not left my loved ones behind. “Auld Lang Syne” represents for me an opportunity to honor those I have lost and whom I miss, while I try to find my way in the present. I am very fortunate to have had these people in my life, to have felt their love and to have loved them. They have all helped to shape who I am. And so, it is with love, and joy, that I remember these special people and share some of their pictures. They will forever be with me in my heart, and will watch over and guide me as I take another step forward to welcome a 2017 that I hope will continue to find a better balance between grief and love, joy, peace, and laughter.
My mom and our Standard Schnauzer, Dulcie. My mom and I were practically attached at the hip and not a day goes by when I don’t think of her, even after nearly 25 years. Dulcie was the best and smartest girl and she is also missed very much!
My dad with our Miniature Schnauzer, Windy, at my Cornell graduation. Daddy liked to look serious, but he was quite the joker. Both of my parents instilled in me a tremendous love of dogs and animals.
(L-R) Great-uncle Louie, Great-aunt “Tanta” Rosie, Great-Aunt Lillian, Grandma Dora, Great-Uncle Larry. Mid-1980s. I adored them all.
Grandma doing my hair. She crocheted my dress. She was very talented! I get my creative streak from her.
(L-R) Great-Uncle Davis, cousin Garry, who, at age 94, passed away just one month before Ben), and Great-Aunt “Tanta” Rosie.
Ben and I with Santa (We know him!) in 2007, pre-ALS
It’s Christmas Day and the first day of Chanukah. I send you good wishes. NYC is pretty at this time of year. We’ve only had a bit of snow, though it got messy and ugly pretty quickly. I saw a couple of store window displays, but was not really feeling enthusiastic, and I did not visit the Rockefeller Center tree. Given its proximity to Trump Tower, I do not think I feel like dealing with the chaos. Since I put up my tree and Chanukah display right after Thanksgiving, I’ve had time to conjure some spirit. I don’t pressure myself to engage in holiday cheer, but I also try very hard not to dwell-at least for long- in sadness or let myself feel obligated to visibly show grief. But every step I take forward comes with the risk of a setback and difficult emotions (click here for prior post). This time, that setback came when it was time to decide on a holiday card.
For many years I’ve hand-made a card that’s usually featured a family pet. In general, I make more of a New Year’s card, to avoid family conflict over my love of Christmas when we celebrate Chanukah. Last year, I wasn’t sure if I wanted to do a card at all, or if it was even “appropriate.” It was only four months since Ben had been gone. I most definitely was not feeling very cheerful. At the same time, having lost my dad in 2014, and then Ben in 2015, I kind of wanted to welcome a new year, though my track record of bad years made me wary of much optimism.
I missed Ben terribly and I wanted people to keep him in their hearts. In grief, he certainly took center stage in my feelings. I decided to create a tribute card with some of our favorite pictures from Walt Disney World, where Ben looked so happy, even as his ALS had progressed. It felt like the right thing to do. Disney was also very, very okay with not having to wear a Santa hat or reindeer antlers, though, oddly, she does like her Mickey Mouse pajamas! The only song that resonated with me was “Auld Lang Syne.” I was still pretty much in shock and exhaustion over the loss, and the notion of remembering loves and lives lost but not forgotten, was a comforting and peaceful sentiment. It suggests keeping our loved ones with us in a spiritual way that, to me, is very beautiful, if also bittersweet.
Should auld acquaintance be forgot, And never brought to mind? Should auld acquaintance be forgot, And auld lang syne! – Robert Burns
Holiday Card 2015 A Loving Tribute to Ben
I shared the card with old friends and new ones, with people who had known Ben for years and saw the changes as the ALS progressed, and with our Facebook friends and acquaintances, some who did not really know Ben, or know him well. I felt then, and I feel now, that it is important to share with people what ALS is and does to a person, even though a photograph only conveys some of the physical manifestations of the disease.
As this year’s holiday season approached, I was not sure how I felt about making a card to welcome 2017. Although so much of what I do still includes photos of Ben, and he is with me in all that I do, I did not feel that I should make another tribute card. Likewise, I did not want to make a card that shouted gleeful holiday spirit that I simply do not feel. I do like to take this time of year to reach out to people to extend holiday greetings and let them know I am thinking of them and I wish them well. I think that my internal debate about whether to make a card and what it should be helped me realize that creating my cards has become an important tradition to me.
For a few years I had toyed with the idea of doing an “It’s a Small World,” card. It started when Ben gave me some of the It’s a Small World singing dolls for Christmas. I never got to make this card while Ben was still here and I decided to give it a go this year. Disney was very cooperative and I did get a cute picture. I feel that the lyrics to the song were very appropriate for welcoming a new year. Given the current political climate, it seemed especially timely.
It’s a world of laughter A world of tears It’s a world of hope, and a world of fears There’s so much that we share, that it’s time we’re aware It’s a Small World after all. – The Sherman Brothers
I chose some of our favorite photos from the attraction to border the center picture of Disney and friends by the tree. I enjoy playing around with Photoshop, so I enjoyed the project of making the card. I felt sort of guilty, and sad, for making a card that did not formally acknowledge Ben. When I began to sign the cards, I felt doubly sad to write only “Love, Abby and Disney.” However, I did have to chuckle as I remembered how Ben joked that he was honored that I signed his name before Disney’s!
Holiday Card 2016
I wrote to some people to explain that It’s a Small World was a favorite attraction of ours, and my favorite song, and that the card featured some of our most loved pictures from the ride, as well as the dolls that Ben gave me. As I wrote this explanation, I realized that whether or not his name or picture is on the card, Ben is a huge part of it. These are our photos, our memories, and his spirit and thoughts of him are right there in the card. He remains in my heart in so many ways and is with me in the less festive moments when I need comfort, but I do believe that he is also with me as I welcome this new year. For that matter, so are my dad, my mom and my grandma.
As I think back to last year’s holiday season, I can honestly say that I could not have made this year’s card last year. The holiday season arrived too soon after losing Ben. It was all too raw and I only wanted to share how much he was missed and how vibrant he was, even with ALS. Over the past sixteen months I have had much time to reflect. I also participated in support groups that helped me sort through feelings and emotions and brought new friends into my life. This blog has been another outlet of working through grief and the caregiving experience. When I’m feeling bad, I feel as if I have not healed, but reflecting on things like this year’s card, I realize that healing happened, is happening, and will continue to happen.
I always seek to honor and celebrate Ben, and I’m sure I always will. Some people feel uncomfortable mentioning him, or they feel that if I talk about him that I am dwelling in the past and/or grieving too long. On the contrary, I like to know that people remember and think of him and I am happy to hear their memories. There is still sadness, but I also allow myself to enjoy more and more good times in the present, as I make new, good memories.
Our last family Christmas/Chanukah, 2014. We got matching Mickey and Friends pajamas- even Disney! (She liked the pajamas, but not the picture-taking!)
I have begun to take steps forward to reshape my life and let in the light, and that also feels good and right, even if my paces are somewhat awkward and unsteady and I fall backwards at times. Sometimes I react to memories or to present life and thoughts of the future with tears and anxiety, at times I ask for help and support, and sometimes I smile with cautious optimism and the feeling that my loved ones are watching over me. I react on my own terms, as anyone in grief must be allowed to do. It’s all healing and it’s all okay.
Wishing you and yours happy, healthy, peaceful and healing holidays!
On this day, December 21, 1937, Walt Disney’s first full-length feature, Snow White and the Seven Dwarfs premiered at the Carthay Circle Theatre in Los Angeles.
I wish I could say that I have navigated caregiving and grief like Snow White, the graceful princess who happily sang her way through taking care of the seven dwarfs to a happy ending. I do believe that at times I was that person to Ben and my dad. I was very much the cheerleader and the person who tried to keep them entertained. I was also the nurturing person who managed the details of their care, the way that Snow White kept her household together, except that I lack her stellar housekeeping skills! Alas, I relate more to the dwarfs! I’ve written about how, as a caregiver, I often felt like all seven dwarfs in the course of a single day (click here for that post). To mark this anniversary of the film’s premiere, it seems fitting to me to reflect on how, in grief as in caregiving, I can feel like all seven dwarfs- at times, within the course of a single day.
Happy– In the early days of grief, you could call me Happy in those moments when I was lost in good memories or I woke up without dreading the day and the thing that would trigger my sadness. Now, you can color me Happy when I realize that I am not just going through motions, and I actually am enjoying a moment in the present without feeling guilt.
Doc– Call me Doc as I diagnose my grief. Am I doing ok? Will people think I’m doing ok? Do I care if people think I’m doing ok? Should I care? Where should I be right now in this process? Am I “normal”?
As you can tell, Ben preferred to take my pics with the dwarfs!
Bashful– Sometimes it’s embarrassing to have a setback or to feel overwhelmed with sadness or tears, especially when I feel that people are judging how I’m grieving, how long I’m grieving, and what I am doing to continue living and reshape my life. It can be difficult to ask for help, and I’m growing too Bashful to ask people who have been listening to me to continue to do so. I’ve repeated the same things so many times, and I do wonder sometimes what people must think.
Snow White and I love Bashful!
Sleepy– There are many sleepless nights for so many reasons- recalling good and bad memories, anxiously contemplating the future and feeling the loneliness and the loss.
Walt Disney World Halloween Electrical Parade
Dopey– Being caught between the past and the present can be baffling. Sometimes I find myself buying something because Ben would have wanted it. When I get home, I am only reminded that he is no longer here, and then I do feel Dopey, and more sad. There are also times when, in the middle of nowhere, something will trigger great sadness and I will break into tears. People are generally understanding, but I still feel kind of Dopey, and Bashful, for that matter!
Not sure which of us is the real Dopey!
Grumpy– The conflicting emotions of grief definitely make me Grumpy at times. Sorry!
Ben (pre-ALS) and Grumpy, Walt Disney World, 2001
Sneezy– Still allergic to Disney, the cat! I still would not trade her for anything. She has been the greatest comfort to me.
How about you? Are you more Snow White or one or more of the dwarfs? Please share in the comments section below. If you don’t see the comment box, just click on the title of this post.
Walt Disney’s legacy lives on so vibrantly and timelessly in so many ways that it’s hard to believe that today, December 15, 2016 marks 50 years since he left this earth. I’m sure it’s no surprise that I love to read about him, and to get a glimpse into his artistic vision and the building of his business enterprises. His belief in himself and commitment to his art are things that we can all learn from. I remember my mom talking about her favorite Disney movies and how she loved Mickey Mouse from the time she was a child. She was just a little girl when he was “born.” “Mary Poppins” was the first movie I ever saw in a theater. It just amazes me how Mickey and his friends touch the hearts of generation after generation. I believe that 50 years from now, and, as Buzz Lightyear would say, “to infinity and beyond,” Walt’s words of wisdom will still stand strong, as will his legacy.
My blog was inspired by the way that I was affected by Disney films, characters and lyrics in light of caregiving and loss. The same can be said about many of the quotes I’ve read by Walt. It seems to me that this is a good day to reflect on some of his words of wisdom that have consoled me, intrigued me and entertained me. Now, they are helping me to look forward and I think that’s especially significant as we approach a new year.
“That’s the real trouble with the world. Too many people grow up. They forget.”
As someone who still has a lot of my childhood dolls and can’t resist adding new ones to my collection, it is obvious to everyone who knows me that I completely embrace the idea that you need to hold on to your inner child. As I’ve said, my inner child is very much at the forefront of who I am. For me, watching a Disney film, and imagining a fairy or fairy godmother at my side, also allowed me to escape the realities of caregiving and loss. My husband, Ben, always said that he loved Walt Disney World because you simply forgot your problems. With a diagnosis of ALS, his problems were huge, but immersed in that fantasy land, he was a big kid having a wonderful time, even despite his challenges. For him to be able to feel that sense of joy and excitement was a gift. Walt Disney envisioned and provided that magical setting. I never want to lose the attitude that allows me to step right into the fantasy the way I did with Ben. I never want to have to stop wishing on stars or forget the wonder and delight that I had as a child.
“Why worry? If you’ve done the very best you can, worrying won’t make it any better.”
This is absolutely true. Alas, I am a worrier, and I have to work on this, but Walt is right. I can’t say that any of my worrying helped, although perhaps thinking through worst case scenarios may have helped me prepare for a variety of situations. I’ve heard that worrying burns calories, but I’ve seen no indication that this works! I worry now about my future, particularly without much family. But, the worrying isn’t going to affect any change, so it’s time to proceed in the best way I can, and make decisions I feel will help me to create a new life, or, rather, enhance my current one with new love, laughter, joy and peace. I’m going to try harder to listen to Walt on this piece of advice!
“Life is composed of lights and shadows, and we would be untruthful, insincere and saccharine if we tried to pretend there were no shadows.”
Grief is tricky. I feel myself take steps forward, and then something triggers a setback. The reactions people have to grief also vary. Some people expect you to “get over” loss within a designated time period. Some people want you to act like everything is fine, because they are the ones who really cannot handle the emotions. I do feel like there is more light in my life now, which sometimes makes me feel guilty but also makes me happy, and I know that the people who love and care for me are glad to see me beginning to enjoy life again. But there are also shadows, and I am not someone who likes to, or can, put on a show of emotions. It’s all okay.
“I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter.”
The Wishing Well at Cinderella’s Castle. We always wished for a cure for ALS. I still hope that wish comes true.
Some people might think that my obsession with all things Disney and talk of pixie dust and wishing on stars is silly. Well, I think silly is just fine (okay, within reason.) I like to think that it is my inner child reminding me of possibilities and letting me believe in my own happy endings. But, just like Walt, I am realistic and I have experienced enough of life to know that things get complicated, and sometimes, downright ugly. In the face of life’s complexities, it helps me to stay positive if I escape for a while into a Disney frame of mind.
“In bad times and in good, I have never lost my sense of zest for life.”
This quote made me think of Ben and his determination to enjoy life despite ALS. He surrounded himself with music and technology, and he ventured into the world and enjoyed all that he could with a zest for life that, I believe, let him manage the disease well for about four years. It was certainly a good lesson for me.
“We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.”
This quote is my current inspiration for the future. I believe that my curiosity, desire to learn, love and compassion will carry me forward to find new and more love, laughter, peace and joy. I cannot deny that right now I feel a bit lost. At the same time, I feel cautiously optimistic about the exploration.
“All our dreams can come true, if we have the courage to pursue them.”
I think that I finally have the strength to summon the courage to follow my dreams. It feels pretty great, and yet a bit scary, to say that. I do believe that pixie dust would help.
“Laughter is timeless, imagination has no age, dreams are forever.”
This is a comfort to me. Laughter, imagination, dreams and, of course, love, were the key ingredients in surviving years of caregiving and loss. They have always been there when I needed them, even if, at times, they felt out of reach. This is something to remember always. Never lose hope. Never lose the spark of a dream.
“First, think. Second, believe. Third, dream. And finally, dare.”
This beautiful song by Chris Martin, and performed by Jodi Benson, never made the final cut of “The Little Mermaid.” I discovered it on “The Essential Collection of Disney Love Songs” and it also appears on other Disney albums. Unlike many other Disney memories that I share on this blog, this song was not one that held a specific meaning for Ben and me, and it did not represent a special time in our lives or relationship. It was not even associated with our time spent at Walt Disney World. But, it is the song whose lyrics spoke to me at a critical time when Ben was in the hospital. Given Ben’s profound love of music, I believe that he would appreciate that it was the lyrics to a song that proved to be so powerful to me.
As the title of the song might imply, Ben and I loved to dance. Nothing fancy, but we would put on music in the apartment and just dance. And, when we worked together at The Little Orchestra Society, we always danced at the organization’s events. It was romantic, silly, fun- it was us.
Before he ever went to a doctor, much less was diagnosed with ALS, Ben started having trouble with his legs. It took him a long time to admit to me that he had fallen down the steps in the subway and on the street, though he had told me that he was perplexed that I could do my Zumba routines better than he could- coordination and grace are not my strongest suits!
The first and last pictures on this slide show were taken at the Bar Mitzvah of my good friends’ son. Ben’s legs were bothering him but he wanted to dance. We were having so much fun at this happy event. As it turned out, this was the last time we danced together. Who could have guessed? I am so grateful to have this photo!
As it became more difficult for Ben to stand on his own, music and dancing still played a part in our lives. While he could still walk several steps, sometimes I would just help him up and we would hug and sway to the music. It felt like dancing, and like old times, and that felt good.
I remember that during our first visit to Walt Disney World after his diagnosis, I was helping him to stand up from a rather low sofa in our hotel room. I counted to 3, but then, remembering the song “1,2,3” by Gloria Estefan, I added the song lyrics, “4, come on baby say you love me!” From that point on, we rarely just counted to 3 and he often laughed as I reached “3,” waiting for me to add the rest. As the ALS progressed, Ben was less and less mobile, but our counting and that song continued to make us laugh. Transferring a person is not easy, and it can be stressful because there is always a risk of falling, or dropping, so it was good to have these little moments of levity.
Our lives changed drastically, but because it happened over a period of almost six years, maybe some changes felt more subtle. ALS slowly took away Ben’s ability to use his legs, his arms, his hands, his voice. He couldn’t eat foods unless they were pureed. He had difficulty breathing. But, he was still Ben and he had determination (at times, stubbornness) and a good sense of humor. He was also clever and he loved gadgets and technology. For example, he used an app and an on-screen keyboard to use his computer and to send texts through his computer when he could no longer handle the phone. He figured out how to organize some of his things so he could make them accessible. These are just a few of the things that were part of living with ALS. We adapted as best we could.
Ben adjusted to the things he could and could not do as the ALS progressed and I adjusted to new tasks to help him. When I think of Ben’s very serious challenges, it may seem silly to lament an inability to dance. But, dancing was one of the things that was so special, so intimate, so us. In the chaos of the disease, I can’t say that I thought to analyze how much the changes in our lives were affecting us beyond our daily routines. I can’t say that either of us even had, or took, the time to dissect the dynamics. We just kept going. But, losing something like dancing made more painful the shift in our relationship from husband and wife to patient and caregiver. Impromptu moments like dancing to a favorite song were replaced with the more immediate tasks of caregiving. To mention missing things like dancing meant the possibility of upsetting Ben, and making myself sadder, because things were not going to get better and we could not change that fact. Sharing a memory was wonderful, but expressing sadness about our losses was not.
Eventually, yet in a pretty rapid and intense decline, Ben began to have more and more difficulty breathing and eating. His feet were also swelling very badly. He opted to get a feeding tube. However, just before the arrangements were made, Ben ended up in the Emergency Room and he got a feeding tube and a tracheostomy. It felt like it happened in a whirlwind and yet it felt like time stopped. So many decisions to make, and so many adjustments. Suddenly, we could not even communicate in the same way. It was frightening and devastating, but he was so incredibly brave and calm. It was clear that he was not going to be able to come home because he would need 24-hour nursing care, and, intellectually, I understood that. But, I believe that my mind was spinning too much to think about what it really meant. Ben was frustrated and upset about not coming home, and that broke my heart. I was worried about him not being home and my not being able to be with him constantly, but I was also dealing with logistics and his medical teams, and simply being present for him as we determined next steps.
I spent every day and several nights with him during the nearly two months that he spent in the hospital. I usually got home very late at night and sometimes relaxed with music, using Ben’s computer for his playlists, which I found comforting. One evening, I remember sitting at his desk when “One Dance” played. I thought about the fun times that Ben and I had dancing in the apartment and I realized just how much I missed those moments. I had done pretty well with recreating memories, especially when we returned to Walt Disney World for our last visit. But, in that instant of hearing the lyrics to the song, the realization came crashing down on me that we would never dance again, and he would never be home again, and he really was going to die. Maybe you’re thinking that he had ALS, so, of course, he was going to die. Yes, I did know that, but that does not mean I truly accepted it or the fact that the time was nearing. But somehow, hearing those lyrics was a jolt of reality that I had not yet faced. On that quiet night, listening to this song, I finally accepted and reacted to what I had not until that moment let myself fully believe–that Ben would soon leave this earth and nothing would ever be the same.
There are stars that fill the night, can you see them? There are two, or three or gee, a million more And I see you in their light Oh, me? A dance? All right. Just to move and glide with you across the floor
I would change who I am Leave the sea for the sand Just to stand with you I would leap at the chance For a glimpse of a glance Of one dance with you
I still listen to the song even though it always makes me cry. In fact, sometimes I play it when I need a good cry, because, yes, there are those times. I have become unapologetic about embracing sadness, because, frankly, there will always be the tears over the loss of Ben, and how much he and we lost. At this point in time, however, I think it’s a matter of my finding the balance between grief and life. It’s not an easy balance to find, but I do feel a steady shift in my perspective that’s allowed me to bring more joy back into my life while I keep Ben in my heart.
It makes perfect sense that the clearer memories are the more recent ones, during Ben’s ALS, when the physical and emotional issues and tension were center stage. Those issues were not unique to us or even to ALS. They certainly are not the memories I want to define us. However, they are important in their own way, because they represent a strength of heart, love and compassion that saw us through such terrible experiences.
I also want to let myself get transported back to those dances and special times that made us who we were together. The memories I cherish, and that belong only to Ben and me, are simple joys like dancing and, of course, anything related to Disney! I will always miss those times, and I will always know that I am fortunate to have had them. I am pretty sure that I also always will believe in happy endings, pixie dust and Disney magic, too.
One dance, just you and me Beneath the moon, beside the sea One dance and it’s happily ever after