Today, February 15, would be my dad’s birthday. It’s a strange and melancholic kind of time, with the anniversary of his passing just two days ago and Valentine’s Day yesterday. But, there are so many good memories on which I try to dwell during these down days. I was a Daddy’s girl and I was his life and his caregiver. I wrote more about him a couple of days ago, on the fourth anniversary of his passing. Click here to read that post. My dad is always in my heart and thoughts, and at this time I would like to take the opportunity to put him front and center and share glimpses of his life. My dad never wanted to make a fuss over his birthday. But, we always did. And he deserved it.
I remember that when I prepared this video a few years ago for his birthday that my dad was not in so many pictures because he was always the one taking the photographs. The background music is From The Hall of Montezuma, the USMC hymn. He would love that. He loved dogs, the USMC and his family. The camouflage coat you will see was an homage to the USMC, and he liked telling people that he wore it when he went outside and tried to hide among the greens from his mother-in-law, my grandmother. I had to include it in the slide show.
Who would have thought that my dad and Cinderella and I would have any connection? Well, they do. Cinderella and my dad share a birthday, since the movie Cinderella was released by Walt Disney Productions on this date in 1950. Cinderella was my favorite princess when I was a child. She remains dear to my heart because there is more to Cinderella than what meets the eye. She appears simply sweet and naïve, but she had feistiness and determination, and also a loyalty to her father’s memory to which I can wholly relate. It was very hard for her to lose both of her parents, but she let their lessons and moral compass guide her. That’s something I completely understand.
Cinderella knew the importance of integrity and the power of dreams, and in the end, all of those qualities got her the love of the prince of her dreams and a position of respect! She knew at her core that, despite her stepmother and stepsisters treating her horribly, “They can’t order me to stop dreaming.” There’s a good life lesson. I know that people sometimes think I’m unrealistic because of my Disney love and its connection to wishing and dreaming. On the contrary, as the caregiver for my dad and for Ben, I was hit with harsh realities on a daily basis. Dreaming and wishing were my escape. They encouraged me to find creative ways to solve problems. And, they allowed me to envision a future where my dad and Ben had peace and comfort and I could stand alone and live happily with them in my heart. As I worked through grief, which will ebb and flow forever, dreams helped me to redefine myself and reshape my life. Now that I am retired, I am taking the time to pursue some dreams. No one can tell me that dreams are not valuable and important.
Maybe you don’t literally talk to your Fairy Godmother, but I imagine that a lot of readers have had a similar conversation with someone, or with themselves, and questioned their faith that they could handle things or that things would be okay.
During caregiving days, when my dad and/or Ben was struggling, knowing that in the end I was going to lose them, it was easy to lose hope and optimism. In those times, I had to thank goodness for the insight and “Bibbidi-bobbidi-boo” of Cinderella’s Fairy Godmother. For me, the dreams and the wishes got me through very difficult and sad days of terminal illness and caregiving and feeling that nothing I did really mattered. There were no cures, no one was going to get better, and things were becoming more difficult. But, I could dream, and those dreams helped me keep the faith.
There is a song in Cinderella called, So This is Love. Though the song is about romantic love, the title is significant. When we are watching someone struggle with illness or we are struggling with caregiving responsibilities, we accept these challenges, and embrace them, because this is love. It’s that simple. And, that complicated.
At the heart of the film is the song A Dream is a Wish Your Heart Makes.
A dream is a wish your heart makes When you’re fast asleep. In dreams you will lose your heartaches. Whatever you wish for, you keep. Have faith in your dreams, and someday Your rainbow will come smiling through. No matter how your heart is grieving, If you keep on believing, The dreams that you wish will come true.
I’ve always been a dreamer who wished for the fairytale ending. Sometimes I think that it’s a matter of perspective. I do believe that my wish came true that my dad and Ben are both at peace, even though grief is hard for me and times like these past few days are quite sad and lonely. I’ve written before that I will wish for and dream about cures for ALS, and also for cancer and the many other horrible diseases. Sometimes it seems futile, but I remember that Fairy Godmother said, “Even miracles take a little time.”
My dad called me his Private Benjamin, but I was also his Cinderella, and I will always keep his spirit alive and let him guide me.
It seems that Thanksgiving is always a melancholy holiday for me. I wake up in tears and feel alone. I’m not alone. I know that I am loved. I feel fortunate in so many ways that I do not take for granted. Still, during this family holiday, I cannot escape the sadness that the family I was always close to is gone. I have redefined my concept of family, but holidays like Thanksgiving remain a challenge. I had a lovely day with friends, but still felt a void in my heart.
I have been thinking about the film Up, and when Ellie wrote to Carl in her journal, “Thanks for the adventure – now go have a new one!” I have opened new doors and continue to do so, I have had new adventures, and I have created a new life for myself. However, there are times that I remain shaken by even the small steps that I take.
One of my rituals is to start every day on my way to work listening to my Ben playlist of songs that were special to us for various reasons. Once the playlist ends, I choose any album that strikes my fancy. Last week, I really wanted to listen to a Christmas album. I apologized to Ben out loud and put the album on instead of his playlist. I tried once before to deviate from the playlist, but it did not feel right. This time, I got teary and unnerved but decided to test myself. I can’t say that I fully enjoyed the album, but I showed myself that I can make these shifts and it does not mean I am forgetting Ben. He is always here.
If you read this blog, you know I believe in signs. I believe that Ben sent me a sign that morning. When I exited the subway, there was a musician playing the violin. Ben loved music, appreciated street musicians, and always gave them money. I don’t think I have ever seen a musician in this particular spot, but I quickly deposited a few dollars in his container, and he smiled at me and wished me happy holidays. I felt a bit overwhelmed but comforted by what I perceived as a sign that Ben was with me and was fine with my listening to new music. Just as Ray from The Princess and the Frog found peace in his knowledge that the star he saw was his beloved Evangeline, I find peace in these signs that Ben is with me. I want Ben to show me that it is okay when I do something new or decide to part with something that has a- perhaps even vague- connection to him. The good thing is that he does send me those signs. You might be saying that I am simply interpreting events to justify my reasoning or actions. You may be right. Or not.
That event stayed with me all day. I ponder whether I handle things well. I wonder why other people proceed more quickly. I have gotten better at ignoring the directives of usually well intended friends and acquaintances. Since I have a general contentedness, I just embrace that I am who I am and the ebbs and flows of grief. That evening, I went to see one of my very favorite performers, Liz Callaway, in a concert with her sister, Ann Hampton Callaway, who has also become a favorite. I have written about Liz in the past. I have followed her career since the 1980s, when I saw her in a Broadway musical called Baby. I became aware of Ann through Liz and love her voice. They often perform at the most wonderful venue in NYC called 54Below. It is my zen location and their voices, their relationship, the arrangements and musicians are my peaceful place. Liz always manages to sing a song that I need to hear, and last night did not disappoint. She sang a song called I’ll Be Here, from musical I never saw called Ordinary Days. It tells a story of love and loss and signs from the departed man that it is okay for her to part with some of his things, or even to fall in love again, because he would always be with her. I knew the song from one of Liz’s albums, so as soon as it began, I felt the tears start to flow. The thing is, it was what I needed to hear. It was the validation that other people also experience the same struggles that I do, but that our loved ones are always with us and that continuing to step forward is okay.
This is a recording of Liz Callaway singing I’ll Be Here.
There are things that I am not ready to change. His old desktop computer, which has his music library, is becoming obsolete and a couple of days ago there was a notification that his system will not support the current updates. I only use the computer to play music, so I don’t know that it really needs replacing. However, that computer occupies space and music that, to me, represent Ben’s presence, and I do not know if I am ready to let go of that. It is irking me to think about it, so I am giving myself time to adjust and decide.
Maybe I am testing myself by slowly or subtly making changes in routines and my apartment because I am making big life changes. In two months, I will be retiring. I am very excited about it, but also nervous. It will, indeed, be a new adventure, and although being alone gives me freedom and independence, that also comes with loneliness and insecurity. This will be a phase of my life that is not connected to Ben, though he lives within me no matter what I’m doing. It is a phase of my life that is so important, and my dad is not here to give me advice. But, the memories, the lessons, the old discussions are still part of me. As the song Liz sang said, they are still here. I am grateful for that deeply felt knowledge.
Despite the hovering sadness and “unknowingness,” this is the time of giving thanks. Walt Disney said, “The more you are in a state of gratitude, the more you will attract things to be grateful for.” I agree with this, and I counter the moments when I feel like I’m floundering by reminding myself of the many things for which I’m grateful. I have come to realize that Thanksgiving is a time when I deeply feel the losses. At the same time, I am grateful for the memories and love that fill my heart. I am grateful that like Peter Pan, I “have faith and trust” and will see the signs that my loved ones are watching over me as I venture into my new adventures.
Holidays can be difficult times. Be gentle with yourselves.
November is National Caregivers Month and on this date, November 17, in 1989, The Little Mermaid was released. Today seems a perfect opportunity to honor both. In my Disney way, I want to describe the progression of ALS as Ben expressed his experience and as I witnessed it. This also brings into view emotional impacts on caregivers that transcend meeting physical needs of those we love and care for.
ALS/Lou Gehrig’s disease, is defined as a disease which causes the death of neurons that control voluntary muscles. My friends and family became aware of the physical effects of the disease primarily through Ben’s experience. Ben’s first symptoms were a lack of balance and falling. His legs also became tired very quickly. As the disease progressed, he lost the ability to use his legs at all, and then his arms and hands, then chewing and swallowing became difficult, and his speech became increasingly impaired as he experienced those muscle losses. His cognitive skills were not affected, so he was completely aware of what was happening to his body. The progression of ALS varies from person to person, so, for example, some people may never lose their ability to walk, others lose their ability to speak first, while Ben lost it last. Eventually, the ability to breathe is lost and a ventilator is required, and that is often the cause of death from the disease.
This scene from Disney’s The Little Mermaid was poignant to me within the context of ALS. Ariel wanted so much to be a human and to be with Prince Eric that she was willing to relinquish her voice to the sea witch, Ursula. Ariel knew that her voice was integral to who she was, but she was in love, and you know how that goes, especially in a Disney film. Once she gives her voice to Ursula, she quickly realizes that she has lost the ability to express herself, and her ability to sing, which was so important to her. She also did not realize that without her voice, she was no longer recognizable to Prince Eric. Of course, she made a choice. Someone with ALS does not get a choice, and I would venture to guess that they would advise her to keep her precious voice.
The Magic Kingdom at Walt Disney World- 2001. Pre-ALS days
The loss of easy communication was very frustrating to Ben. First, phone use became difficult because handling the phone was hard and it was difficult to understand him. We then began frequent texting. Ben used a virtual/on-screen keyboard and an app that connected his phone to the computer screen. However, if his hand slid off the mouse, communication was cut off and that led to some very tense moments.
Living with Ben, I was more likely to understand what he said and I could facilitate conversations with others. There were times, however, that even I could not understand him. He would shake his head and tell me to “forget it,” which upset both of us. When communication was an obstacle and he was homebound, Ben did notice and lament that he had less contact with people. Friends and relatives with whom he thought he was close stopped reaching out, or, they made promises to visit that they did not keep. At the same time, he did not really want people to see him only as he appeared. He did not want them to see him looking gaunt and struggling to talk, eat and move. It left him feeling isolated and hurt.
When strangers did not understand Ben, they sometimes assumed that he was mentally challenged and spoke to him like a child or addressed only me. Often, Ben laughed about it, but on some occasions he felt invisible and very misunderstood. So, I involved Ben in the discussions to show people that Ben was fully capable of understanding and had lots of opinions and many people did follow my lead. As caregivers and loved ones, I see it as our responsibility to educate people through example, because some people are willing but not quite sure how to engage with people with a variety of disabilities. Unfortunately, not being able to say what he wanted and be truly seen and heard sometimes caused Ben to withdraw. I cannot begin to imagine how Ben felt to be seen for the ALS symptoms rather than for himself.
After a respiratory crisis landed Ben in the hospital, he had a Bipap mask before he had the tracheostomy. This was the first time that Ben really had absolutely no voice. He could not call me, or call for help, or just have a conversation. On an emotional note, he could not kiss me or tell me he loved me. When I recently re-watched The Little Mermaid and I saw Ariel panic the first time she tried to speak and remembered that she could no longer do so, I remembered Ben’s panic at the thought that he could not easily get someone’s attention with is voice, but he also could not use a hospital call button. Ben was afraid to be alone in the hospital room and I was afraid when he was alone. The mask obscured his mouth, so reading his lips was also very difficult. We spelled out words by my reciting the alphabet and his nodding when I reached the correct letter. However, the length and tediousness of that process frustrated him, and he began to weigh what he really needed to say. There were many incidents when hospital staff ignored Ben and asked me questions that he could answer. I immediately addressed those questions to him so that he could participate in the discussion. Yes, it took longer, and it was not easy, but he mattered, and staff had to accept that. Most really were wonderful, and they got a glimpse of who Ben really was beneath the ALS. But, just as Ariel felt devastated that Prince Eric did not recognize her, Ben, too, felt that he was becoming unrecognizable, even to himself. It also made him look at how he saw himself moving forward, which was something he had tried to avoid since his diagnosis nearly six years earlier.
Ursula tells Ariel that even without her voice, she has her looks, and to “never underestimate the importance of body language.” Unfortunately, with ALS, Ben could not rely on body language. He certainly did not underestimate its importance. ALS slowly strips away a person’s ability to move their limbs and even make facial expressions. Although Ben’s experience with ALS never progressed to the point where he was completely immobilized, some people are left only with the ability to blink, if that. Without a voice or facial and body expressions, a person would understandably feel isolated and even irrelevant. Although visits from loved ones are appreciated, they are not easy, so, unfortunately, as in Ben’s case, visits become less frequent.
Walt Disney World, 2001
Ben could certainly have related to Ariel’s wish to have legs like a human. As he lost his ability to walk, he often told me that in his dreams he always saw himself walking and running. As Ben lost his abilities to walk and move his arms and hands, he saw himself as weak and self-conscious. He missed going outside and playing handball. He did enjoy using his scooter, but daily life skills were becoming impossible and that carries an emotional toll. He walked until he accepted that his legs could not handle a single step without his sinking to the ground. That took away his freedom to move around the apartment. It chipped away at his dignity to have to be transferred to and from the bed, his chair and the commode, and to have to be fed his meals. He often denied that he needed as much assistance as he did, which was stressful for me as his caregiver, but that was what he needed to tell himself to deny that ALS was progressing.
Ben was also aggravated that he could no longer do things that he loved to do, like play music on his keyboard and fix computers. He could still talk me through what needed to be done with the computer hardware, but it was not the same. He also continued to research and discover adaptive electronic and computer devices, though they rarely worked for long, as new symptoms of ALS constantly appeared that rendered them ineffective. Music always remained an essential part of Ben’s life and our relationship, and although he couldn’t play his instruments, and we could no longer dance, he never stopped listening to music and making little videos with music clips for me to celebrate different occasions. I also brought his iPad to the hospital, so he could always listen to his favorite tunes.
Body language encompasses body image. ALS seriously impacted on Ben’s body image. He said that he did not like to look at himself in mirrors. As eating became more challenging, Ben lost a lot of weight. His feet got terribly swollen and even the widest shoes did not fit, so he wore adjustable slippers. He could no longer shave himself and although he said I did a pretty good job, I did not do as perfect a job as he did. We could make it fun and funny, but the underlying issue- the deterioration of his muscles- was frightening and tragic. At one point, his aide shaved his beard and left only his mustache. He was a bit insulted that it took me a while to notice exactly what was different. I think that I somewhat tuned out the physical because there were simply so many changes, and they were too sad to dwell upon. Ben, on the other hand, regularly studied the photos from our visits to Walt Disney World and compared his physical changes from visit to visit. In fact, when I showed pictures of those visits to friends, they always commented on how thin Ben had become, shocked by his physical transformation. When I looked at the photos, I saw only the joy on his face. I guess that’s the Pollyanna in me.
Fortunately for Ariel, she was surrounded by people (well, mer-people and some very adorable sea friends) who loved and looked out for her. Sebastian was an astute and compassionate, if high-strung, caregiver. Nutty but devoted Scuttle revealed Ursula’s evil magical trick to get Eric and Ariel’s voice was restored, she was able to keep her legs and marry the Prince. There was the Disney happy ending.
ALS is not a fictional magical trick, rather, it is a cruel disease to which Ben ultimately succumbed. Still, despite the obvious devastation of his struggle and of losing him, I have to look at the end of Ben’s ALS story with some positive thoughts. Ben’s personality shone as he left this world, according to the very wishes that he expressed, even without his voice, embraced by people he loved and requested to be present, and with music that filled his heart. He was heard and he knew that he mattered and was loved, as his hero Buzz Lightyear said, “to infinity and beyond.”
Now, I use my voice to spread awareness and support caregivers and people with ALS. And, in my Disney way, I will keep wishing on stars for a cure that will ensure a genuinely happy ending for those with ALS.
Welcome November. October is a bittersweet month for me. I love fall, I love Halloween, and it is my birthday month- all good things. Still, there are so many memories in these events that I do struggle. This year felt like a good time to try to make some shifts.
Halloween was a favorite time of year for Ben and me. We didn’t love to dress up, but we loved to go to Walt Disney World. We were like two little kids at Mickey’s Not So Scary Halloween Party, where we went trick or treating and danced with our favorite Disney buddies. We delighted in the Boo To You parade.
Halloween 2012. Eeyore’s wearing a birthday hat!
When we were home in NYC, we went to a local street party, where a few blocks transformed townhouses and apartment buildings into magnificently decorated haunted houses and adorably costumed little children collected their treats.
I was grateful in 2019 to return to Walt Disney World for Halloween with my friends. It wasn’t the same, but we paid tribute to Ben and I created wonderful new memories and saw that I was adjusting to my coexistence with grief. (click here to see the post about this).
Looking back and being happy in the now!
In more recent years, I have pushed myself to walk down the NYC block as the brownstones have begun to be decorated. It is always emotional, but I remember the joy. I take photos, especially those that I know Ben would like, especially because he loved to take photos as I do. It is possible that one day the tears will stop. I channel Quasimodo and take my steps towards the block saying, “Today is a good day to try.” I know that I am okay. Actually, the emotions let me reflect on my feelings, my growth (or not) and paths I might follow.
One of the streets of the block party.
Since I lost Ben, one of my daily rituals has been to listen to my Ben playlist on my way to work. This is a list of songs that were meaningful to us for various reasons. Once I listen to that playlist, I choose any music that strikes my fancy. The important thing for me is that I start my day with our music, especially because music was so important to Ben.
This year, on Halloween, I made what felt like a very significant decision. Instead of our playlist, I played the Disney event soundtrack with the Halloween parade and Halloween music. Ben would have been playing this all day on Halloween. It felt right to play it.
Granted, this is still music deeply connected to Ben and to our relationship. Still, until this day, I would not have deviated from my daily ritual. I would have felt it was somehow disrespectful. For me, this slight shift was significant and noteworthy. It showed my ability to evolve and find ways to keep growing and frankly, living.
For me, when I feel that I want to challenge grief, I channel Quasimodo. In a recent post, I wrote about changing my laptop lock screen and background images, which have always been of Ben. I tried to live with my background being different. It didn’t work. Every night, I say goodnight to Ben, and not seeing his image was too unnerving to me. I decided to simply switch the images. Now, I have my otter image as my lock screen, the image that I see each time I tap the laptop or take it out of sleep mode. But, Ben is my background. I tried, and I did make progress, but I had to make it work for me. I didn’t discuss it with anyone. I’ve learned to listen to myself more. I even applaud myself when I try or I test myself.
I watch a lot of widows and widowers step forward in ways that I feel are faster and more adept than the way I slowly amble down paths. I remind myself that we all choose our own paths. With retirement approaching in just a few months, I am once again figuring out how to reshape my life. I certainly have my concerns, but I look forward to traveling more and to working on new projects, ranging from writing to working with caregivers. I also feel myself embracing the notion of finding- or making- room in my life for new romance. I see myself looking at making some small changes to my apartment. Right now, these are only internal dialogues without actual actions, but they are positive. Each day I remind myself that “Today is a good day to try.” When I find myself feeling a bit more ready, instead of chastising myself or worrying about how I am coping with where Ben belongs in my life, I prepare to take yet another step, and sometimes that means momentarily standing still and taking it all in, at my own pace.
Ben and I with Peter Pan and Wendy Walt Disney World in 2006 Before ALS
“Never say goodbye, because saying goodbye means going away, and going away means forgetting” –Peter Pan, J.M. Barrie’s Peter Pan and Disney’s Peter Pan.
I have learned to co-exist with grief and to embrace my great and not so great moments. I have reshaped my life and maintain certain rituals that I feel keep me connected to my mom, dad, grandma, aunt Ellie, and Ben. Sometimes they make me sad, but they generally give me comfort and pride. When I think that these people to whom I was closest are all gone, it does make me feel alone. But, I try very hard to stay in a state of gratitude for the great friends who surround me and for the love I feel in my life. Still, an incident a couple of nights ago has had me struggling with the notion of goodbyes and feeling a little Winnie the Pooh “Oh, bother”-ish.
I have a lot of Ben memorabilia around my apartment. Sometimes I think that I want to change things around. I have our Disney photo shower curtain, our Disney photo throw, my annual photo calendar, and photos and trinkets everywhere. Ben’s face is the background screen on my laptop. One of my favorite photos of us at Disney is my lock-screen. Last week I was having issues with my laptop and a technician came to fix it. That’s always hard for me because Ben was always the person who took care of my laptop. This is the first laptop I purchased on my own and it has given me a lot of problems since I got it. Sometimes, if I’m feeling cheeky, I wonder if Ben is being a grim grinning ghost and creating these issues. Other times, it just unnerves me for a bit, reminding me that he’s not here to take care of me.
After the computer issue was resolved, I finally got around to updating my operating system. I had to reselect my background and lock-screen images. I kept the photo of us as my lock-screen and that felt right. At first, I found the one I always had of Ben. Then, I thought I might like to have a photo from a couple of years ago, when I went swimming with river otters in California with my best friend. A new wonderful memory. So, I selected that one instead. I immediately felt anxious. I was in the same place I was in when I thought about changing my photo calendar (click here for link), and I have continued to make that calendar each year. I felt like it is an insult to Ben and to our relationship. I felt like I was saying goodbye. Again. This time, even to memories. And, since his face was the last thing I saw when I turned off my laptop, I always said goodnight to him. I was lost.
This has been my laptop background for the past nine years. Taken at WDW pre-ALS
I have kept the photo with my friend and the otters as my background. It does not quite feel right- yet- but I am giving myself time. Today, I found myself looking at it and remembering the fun of that time. I have been enjoying life, creating beautiful new memories, discovering new hobbies and talents, preparing to retire. I am not lost in the past. But, something as tangible as replacing one photo with another seemed to represent saying goodbye in a very significant way. I was unprepared for that and I am not exactly sure how to proceed.
My new laptop background image.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
I have said that I would like to find love again. I can intellectualize that having a home where Ben is on every wall and most shelves probably does not open me up to welcoming someone new into my life. Emotionally, I am still connected to Ben and, in a very abstract way, he seems to still give me a sense of security. Removing his picture was letting go of him. I don’t think I realized that even after nine years, I have not yet entirely done this. I have done so much to grow my life, but he is still vividly here. I’ve been so involved with my writing and other plans and projects that I have even wondered how much I really do want to look for love. I have not done anything to actually try to meet someone new. I kind of operate with the thought that Disney magic will make this person somehow appear. The thing is, when I realized how much the photo switch jarred me, I also faced the obvious- that I don’t have Ben’s love anymore. I loved being in love, being in a relationship. Having all these things around me oddly does keep me there.
Maybe my step to change the picture was, in fact, just my continuing and, I suppose, never-ending journey with grief. Maybe it was my inner self telling me that I want and am ready to take those steps to meet someone new. I really don’t know. I do know that I don’t want goodbyes to be forgetting.
Maybe I should just leave it to the pixie dust. For now, even without his picture as the last thing I see when my laptop powers down, I will continue to say goodnight to him. And, I think that’s okay. If I put a Pollyanna “Glad Game” spin on it, grief is hard and endless, but I’m glad for the opportunities to revisit what I was lucky enough to have and to see that there will always be bright possibilities and potential whimsy (and love) ahead.
