Last night, I watched my recording of an episode of The Aquarium (it’s on the Animal Planet channel). I was so excited about this series because it features the Georgia Aquarium, a very special place that I visited for the first time last summer. In fact, it is so special that I am returning in August.
Penguins were featured in this particular episode. Ben and I loved penguins and last summer, I was fortunate to be able to meet two of them during encounter programs at the Georgia Aquarium. It was a bit unnerving for me because doing a penguin encounter was something I had tried to arrange for Ben and me, but the weather was terrible when we were supposed to go and Ben was afraid to venture outside. Sadly, we never had another opportunity, since he passed away about six months later. It felt simultaneously right and wrong to do an encounter without him. I felt like I did it for us and participated through his eyes. Maybe it’s wishful thinking, maybe it’s justification, but it gives me peace and lets me feel him at times when his absence is suffocating.
In this episode, a baby penguin was born, needing help to hatch and then he was not thriving. They did a lot to help this sweet baby and ended up intubating him. Ultimately, they euthanized him. I was already in tears seeing the tube in his mouth- so tiny to go through this. It summoned memories of when Ben was intubated, which was terribly frightening. Loving penguins as we did, I know that watching this scene also would have devastated Ben. I was hoping for a happy ending and it didn’t happen. The Aquarium wants to present an accurate portrayal of what goes on. I watched the staff cry as they watched the baby leave the world and I sat on my sofa bawling as I have not done in a while. Even today, I have not been able to compose myself. I am back in the saddest and most frightening of memories.
I know that I cry easily and I accept that about myself. I love animals, so seeing a little baby born and then not able to survive is heartbreaking. Having had to put Disney to sleep just a few months ago, and my cat, Tiffany, ten years before that, I know the heartbreak of letting go despite knowing that it is the best thing for your furbaby. Maybe because this was a penguin- the animal Ben and I made ours- made it that much worse. I often talk to Ben, especially if I feel his presence, and I kept looking at his chair hoping for him to console me and knowing that he would feel and share my pain. That may not seem logical or reasonable, but it works for me. Sometimes.
I certainly think about our days in the hospital, but I haven’t relived for a while the intense fear of when Ben had to be intubated. It was done in such an emergency that they performed the procedure in his hospital room rather than bringing him to an operating room. The frenzy was scary. I busied myself by updating his family, but a texting drama was begun by a couple of his family members who were never present but seemed to think that judging me compensated for their lack of attentiveness. Although I refused to participate, I can’t say that it didn’t weigh on me when I still felt that it was responsible to text updates. After the procedure, Ben had to go to the ICU, which I was told was protocol but was still terrifying. Unlike the penguin, with ALS, we knew that Ben was going to die, but these were crises and where death loomed over us, now it was like a flashing neon sign. Listening to the Aquarium veterinarian talk about euthanasia brought back all of the memories of Ben ultimately deciding that he was miserable on the ventilator and choosing to leave this world. So, here I was on my sofa crying for the penguin and for Ben, remembering not the music and the love that surrounded Ben on the day that he left, which I try to keep at the top of my memories, but instead, reliving all of the fear and devastation of that time.
I am drained. I was unprepared for the setback. I looked forward to seeing this episode with my little friends from the Georgia Aquarium. I was happy to recognize some of the staff members who led the encounters I did with the penguins, dolphins and sea otters. Now, I am back among the worst memories of Ben’s battle with ALS and the tragic choices that he had to make. August will mark four years since Ben left. Some people would say that I should not react as emotionally. Maybe I shouldn’t. But I did. I am always wary of when I will have a setback. This was a particularly bad setback, but I’ve learned that I will bounce back. It’s grief. On a daily basis, I’m actually doing fine, but that doesn’t erase my experience and the loss. So, I accept that just as I smile when I think of the wonderful and loving memories- even those during Ben’s ALS days- I will cry when reminded of the pain and loss. It is unnerving and exhausting, but as Baymax so astutely says, “It is alright to cry. Crying is a natural response to pain.” If I want to put a positive spin on it, it’s because I was fortunate to know and give so much love and caring that I feel the pain so deeply. Grief is never easy or predictable.
When I think of Goofy, I can’t help but remember all of the fun times that Ben and I had with him. Of course, he’s always a lot of fun- he’s Goofy! But, after Ben’s ALS diagnosis, we learned that there is a whole lot more to his Disney magic than silliness. Goofy was a big dose of comfort to Ben during our last visit to Walt Disney World.
Meeting our Disney buddies was always fun, especially for me, but after Ben’s ALS diagnosis, seeing them, especially Mickey Mouse, became very emotional. Although Ben traveled around the parks in a scooter and then an electric wheelchair, while he still had strength in his legs, he stood up for photos with Mickey, Minnie, Pluto, Goofy and Buzz Lightyear. As his legs weakened, he still tried to stand for Mickey and Minnie. A couple of times, Mickey even helped me to help Ben out of the chair and he escorted Ben to the photo spot. During our last trip, in 2014, when Ben would not stand at all, I knew he had truly weakened. Living with him, you might think that it would be more obvious to me that he had deteriorated, and of course you would be correct. However, Ben admitting that he could not stand to meet Mickey was symbolic of his surrendering to ALS and that our life was never going to be the same. I think that Ben was overwhelmed and his tears were a kind of rare plea for help. For magic. It was an overwhelmingly sad and emotional meet and greet, with Ben and me in tears. Mickey had hugs for both of us and I asked him for some magic. With a diagnosis like ALS, you just want to believe in that magic.
It was actually Goofy who picked up our emotional pieces. He saw me trying to comfort Ben and he knelt down next to Ben, being his Goofy self, and soon enough, Ben was laughing. He hugged Ben, he danced around, and simply didn’t stop “goofing around” until Ben was back in the magic. Goofy knew just what to do and there was nothing Goofy about that! That’s Disney magic.
Thank you and Happy Birthday, Goofy! You are 87 years young, and a forever friend.
May is ALS Awareness month and despite the popularity of the Ice Bucket Challenge, it still is not a well-known or understood disease. It’s a melancholy month for me because I see so many posts about ALS that remind me of the tragedy and cruelty of this disease and how far we have to go to manage and ultimately, to cure and eliminate it. I am always happy to see the strides that have been made and proud to be part of a community of people with ALS and their caregivers, who offer boundless support, commiseration and encouragement. While I tend to reflect on how I felt as a caregiver and in grief, this month brings me back to the actual, day-to-day impact of ALS and how Ben expressed his experiences.
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 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 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 as he looked. He did not want them to see him looking gaunt and struggling to talk, eat and move. It did leave 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 with a happy ending, 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.
Easter seems a perfect time to honor my very favorite bunny, Thumper, from Walt Disney Pictures Bambi. I’ve always loved Bambi, and when I first started this blog, I wrote about the song Love is a Song that Never Ends and how it resonated with me in caregiving and in grief. My experience as a caregiver led me to see Thumper’s relationship with Bambi in a whole new way.
Thumper was the very adorable and lovable young forest gossip, and he certainly didn’t always say the right thing. He was the one to point out that Bambi was “kinda wobbly, isn’t he?” and “he doesn’t walk very good, does he?” This is not exactly the positive reinforcement someone wants when struggling and self-conscious! And while his mother had to remind him that “if you can’t say something nice, don’t say nothin’ at all,” Thumper was just a child making an observation, albeit tactlessly, but his heart was in the right place. Actually, he was quite devoted to his new friend, the young prince Bambi.
Thumper and his siblings (also incredibly adorable little bunnies) play with Bambi but also watch out for him. They anticipate where he is going to struggle and they gather around to help him so they can play together. Thumper was Bambi’s motivation. I especially love this clip, in which Thumper assesses the situation on the ice and tries to position Bambi’s legs, advising Bambi to “walk both ends at the same time.” It doesn’t go so well and they both end up skidding and falling. It reminded me of the way I had to work with Ben to help him up and figure out the best way to get around. We each had to trust each other and there were times we were nervous and other times it was fun. There were times that I managed to keep him from falling and got him safely onto the bed or a chair. There were also the times that we both ended up on the ground, fortunately unharmed. And, like Thumper, we often found ourselves saying, “Gee whiz, what happened that time?” I always loved this scene in the film, but now I see it in a new light.
Thumper never gave up on Bambi or their friendship in the same way that as caregivers, we never give up on our loved ones. And, Thumper was so happy when Bambi did have an accomplishment like walking steadily. Though Bambi is first learning to navigate the world and Ben was adapting to new ways to do some tasks and dealing with losing the ability to do others, I could relate to Thumper’s positive attitude of problem solving and encouragement.
Also touching was that he never left Bambi behind in pursuit of his own fun. ALS is known to be an isolating disease, particularly because you lose the ability to communicate. Thumper was determined to have Bambi join him with their other forest friends. It is an important lesson for all caregivers, friends, relatives and others to find some way to remain engaged with our loved ones. Visits, cards, texts, emails, photos, videos and a simple presence can all help a person feel remembered and included in life. Ben and my dad always enjoyed hearing that people thought of them. As their caregiver, it lifted own spirits when my friends reached out to them, too.
The film also deals with Bambi’s fear, confusion and sadness when he loses his mom. He did not know what the future and the world held in store. But, time went on and winter turned to spring, and Bambi grew up. He reunited with Thumper and Flower and the rest of his friends and all their families, and none of them ever forgot the friendship they shared. Thumper and Bambi- and a dose of Disney- remind us that love never dies and beautiful memories stay strong and sustain us as we move through life’s good and bad times.
If you haven’t seen the film, or haven’t watched it in a while, treat yourself. It is a beautiful story.
To everyone who celebrates it, Tinker Bell and I wish you a Happy, Peaceful and Healthy Easter!
And, since the holidays coincide, a Happy Passover as well!
Ben was doing his best Ricky Ricardo impression. 2007
I have always loved music, especially Broadway show tunes and Disney songs, but all kinds of movie soundtracks and pop music, too. Music was an integral part of Ben’s life and he taught himself several instruments. Even as it became more difficult for him to stand on his own, music and dancing still played a part in our lives. Sometimes, as I was helping him stand, we would hug and sway to the music. It felt like dancing, and like old times, and that felt good.
We had songs that meant a lot to us for various reasons. Now, every morning during my commute, I listen to my “Ben” playlist, comprised of songs that were meaningful at the end of his life and that were played for him on his last day. It is an important routine for me and it gives me a certain comfort to hear these songs and think of him as I start my day.
Yesterday, I was listening to music as I walked downtown. I put on a playlist of Gloria Estefan songs, so I would feel energized. Suddenly, the song 1,2,3 came on. I couldn’t listen to it and immediately forwarded to the next song. 1,2,3 was a song that was very significant and fun for us, yet it’s a song that I have not been able to listen to since Ben left this earth.
During our first visit to Walt Disney World after his diagnosis, I was struggling to help Ben to stand up from a rather low sofa in our hotel room. I counted to 3, but then, remembering the song 1,2,3, I added the song lyrics, “4, come on baby say you love me!” Ben couldn’t stop laughing. From that point on, this was our counting ritual, and Ben often started to laugh as I reached “3,” waiting for me to add the rest. As the ALS progressed, 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.
I can’t say why this is a song that I cannot hear and focus on the memories of the laughter. After all, I listen to and find comfort in songs that were played on the day he died. But, this is a song I can no longer enjoy and I don’t want to hear it.
Another song that is a jolt to my system is One Dance, but although I have to brace myself, I do continue to listen to it. 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. It is the music in the video clip below. Click here to read the whole post about music and the song.
The lyrics of One Dance spoke to me at a critical time when Ben was in the hospital. 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. 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. I was also very busy and distracted by the day to day, moment to moment activities and decisions in the hospital. Somehow, hearing those lyrics was a slap 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
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. 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.
One dance, just you and me Beneath the moon, beside the sea One dance and it’s happily ever after
I want and need 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 songs, dancing and, of course, anything related to Disney! I believe that 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.
Over the past three years, I have at times wanted comfort, at times wanted to sink into the depths of sadness and everything in between. I have at times chosen to watch Disney films that I knew would make me cry, recognizing my need to do so, while sometimes finding great joy and comfort in those same films or others. I have never been one to fight my feelings. I am not afraid of tears and sadness. If anything, for some time after I lost Ben, I had difficulty, and was guilty, for feeling happiness. Grief has helped me to accept that my emotions are not always under my control, but that they are all legitimate and genuine. There will be the unexpected triggers of good and bad memories. Maybe one day I will be able to hear 1,2,3 and maybe not. I don’t think I will ever really understand the reasons. I will have to continue to follow my heart and listen to the songs that tug at my heartstrings depending on my moods. But, I do love that music will always tell Ben’s and my story. It is the soundtrack of our relationship that I will always be able to conjure. As the song from Bambi goes,
Love is a song that never ends One simple theme repeating Like the voice of a heavenly choir Love’s sweet music flows on.
The Dapper Dans were very cool! Ben always loved them.