On ALS and What The Little Mermaid Learned About Losing Voice and Herself

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“The Little Mermaid” © Walt Disney Pictures 1989

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.

[bctt tweet=”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.

[bctt tweet=”In my Disney way, I will keep wishing on stars for a cure that will ensure a genuinely happy ending for those with ALS.”]

Walt Disney World
July 2014

Thumper- A Special Bunny Who Knew About Caregiving and Friendship

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Bambi (1942)
Copyright©Walt Disney Productions

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!

On Looking Up, Cheering Up And All Things Up…Or Not

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I just saw the new Dumbo, which I enjoyed. It’s a different telling of the story, with added dimensions that make it darker and a bit harsher, and once I suspended comparisons to the original animated version, I was able to see a lot of good things. Seeing Dumbo fly continues to be magical, despite the obvious theatrical effects, because we are rooting for this very sweet and sad little elephant. His flying is overcoming a challenge and finding a gift and talent. He doesn’t just fly, he soars! Isn’t that what we all strive to do?

Seeing the film made me think about all of the references to flying and looking up in terms of our viewpoints and moods. Think of the expression “cheer UP.” It’s interesting how we look up to the sky for hope and inspiration. When I was about four years old, my great-grandmother died, and I was told that she went up to heaven. I took that literally, as most kids that age would, and whenever I saw a pink sunset, I thought she was saying hello from heaven. To this day I think of that.

Here’s some UP-lifting inspiration in Disney and Pixar films.

After seeing the new Dumbo, I couldn’t help but think of the original Dumbo and its unforgettable quote, “The very things that held you down are going to carry you up and up and up.” I have written about how I lost myself when I was the caregiver simultaneously for my dad and Ben, but that it was also the most loving and meaningful experience I have ever had. (click here for my prior Dumbo post). Through that experience, as I began to reshape my life, I realized that being a caregiver is integral to who I am. It was not a quick revelation, and it took distance from the actual work of caregiving to see it, but I did gain insight. That, in itself, has given me perspective that meaning and significance may reveal themselves in unexpected ways and in due course. It comforts me to know that it’s there and it makes me want to find it. That is pixie dust and Disney magic at its best!

“Think of all the joy you’ll find, when you leave the world behind and bid your cares good-bye. You can fly!”- Peter Pan

Ben and I with Peter Pan and Wendy
Walt Disney World 2006
Before ALS

This is a bittersweet quote to me. I think about Ben leaving this earth. I believe that he found peace, and hopefully, joy, when he bid farewell to ALS and its physical and emotional tolls. Now, for me, it is a message of rising above the scars of caregiving and loss. Again, those things may have held me down, but they also lifted me up so that I can fly over those obstacles. Being able to fly allows me to look down and get a clear and bigger picture of the trajectory of my life. The sky is endless, as I like to believe are the possibilities.

 “There’s a different point of view awaiting you if you just look up.”– Jack, Mary Poppins Returns

It’s hard to argue with Jack, especially when Jack is played by Lin-Manuel Miranda, who seems to do everything right! I have found that sometimes even a conversation with someone allows me to look at a situation in a different light that is helpful. It may be positive, it may even be negative, but a new change of view can let some light, or wisdom, into your current situation.

Ben and my second visit to Walt Disney World, 2002
Mary Poppins is the first movie I ever saw in a theater. It will always have a most special place in my heart.

 “When you change the view from where you stood the things you view will change for good.” – Mary Poppins, Mary Poppins Returns

Mary Poppins-in her original and reimagined form-inspires me! I do believe this because I have experienced it. It took some time after my caregiving days and the depths of raw grief to reframe my thoughts and memories. Although I wish upon wishes that my loved ones did not have to suffer and need me as a caregiver, I can now look back on my memories, shifting from the challenging times to see that I learned so much and had a unique and treasured opportunity to give and receive love. I am not being naïve or denying the physical and emotional challenges and scars, but broadening my way of looking at them.

If I’d known when I met Genie that Ben would get ALS, I would have asked him to grant the wish of a cure.

“Unbelievable sights
Indescribable feeling
Soaring, tumbling, freewheeling
Through an endless diamond sky”- from the song A Whole New World, Aladdin

Songwriters: Alan Menken, Tim Rice

Looking up into the sky to me seems like just a way of reminding us to look for the unseen possibilities and unexpected surprises. Yes, I have been, and will be, disappointed in people and events, but I am more keen to remember the delightful surprises- the people who have shown up, the kindness that I have received, the memories that have shared with about Ben from people whom Ben and I both thought had forgotten him. I think about the new friends I have made and the lasting friendships that have been strengthened. Those are all indescribably wonderful feelings.

Nowhere To Go But Up
Songwriters: Scott Wittman / Marc Shaiman

Life’s a balloon
That tumbles or rises
Depending on what is inside
Fill it with hope
And playful surprises
And oh, deary ducks
Then you’re in for a ride

Look inside the balloon
And if you hear a tune
There’s no where to go but up
Choose the secret we know
Before life makes us grow
There’s nowhere to go but up

I love this song, and not just because it was sung by one of my favorite performers, Angela Lansbury! But, it’s a realistic look at life that acknowledges its ebbs and flows. I get my strong inner child from my mom, but I hold onto it to try to find the pixie dust when things are lousy. It made me want to handle the challenges of caregiving and grief with at least some level of grace and helped me to bring smiles to my dad and to Ben. It allowed Ben and me to go to Walt Disney World and shed our cares as we lost ourselves in the magic. And, although I have the moments when I still feel like I’m stuck on the ground, I do aim to look up for the pixie dust and to spot the magic. I may be down, but from down, there’s nowhere to go but up, especially if I hold on tight to the child-like whimsy that I get from my mom.

Let’s Go Fly a Kite’
Songwriters: Richard Sherman / Robert Sherman

Let’s go fly a kite
Up to the highest height!
Let’s go fly a kite and send it soaring
Up through the atmosphere
Up where the air is clear
Oh, let’s go fly a kite!

Mary Poppins, Walt Disney Productions, 1964

I had to pay homage to my very favorite Disney film, and the first I ever saw in a theater, Mary Poppins. Who can forget the images of the family walking down Cherry Tree Lane with the kite and then of everyone flying their kites and looking up, spreading good cheer, even sharing good memories as the bank partner spoke of the passing of his father. And, just like I believe that my loved ones are watching over me, you know that Mary Poppins is taking to the skies to watch over the Banks family. Lest you think I have overlooked the original Mary Poppins, click here for a post on wisdom from Mary Poppins

“When the world turns upside down, the best thing to do is turn right along with it.” – Mary Poppins, Mary Poppins Returns

Looking up can certainly help us to cheer up and to change our moods. But, the truth is, sometimes we can barely get off the ground or out of bed. I firmly believe that I need to let myself feel sad. We need to trust ourselves and not force a smile when we’re not feeling it. There have been times when I have told people I’m fine. There are times I’ve told myself I’m fine because maybe I haven’t even realized that I’m not. Then, the tears really flow. It’s exhausting. Friday would have been Ben’s and my 20^th anniversary. There was a sadness to the day that I could not deny or ignore. But, I have also learned not to anticipate how I will feel or what I will do. In fact, it was an up and down kind of day.

There is so much advice in Disney films about looking up when you’re feeling down.  I do think it’s important to remember that in the depths of grief, we don’t always want to look up. Or, we want to, but we are incapable of feeling anything but devastation, anger, confusion or even numbness. I agree with Mary Poppins (no surprise there!) There is a point during Disney Pixar’s Inside Out (clip below) where Joy realizes that life is a composition of many emotions. We cannot eliminate the sadness, or even the anger or anxiety. It is the human experience. For me, it’s a matter of balancing the emotions, looking for good memories and knowing that I can pace my life and be attuned to myself. I can grant myself permission to feel any emotion at any time and know that I am, and will be, okay. Also, that there is help in many forms if I’m not feeling okay.

I want to conclude with Up, a film that, in its title alone, summons optimism! It’s always been important to me to acknowledge my feelings and to validate the feelings of others without stamping my prescription for cheering up, unless specifically solicited. There are ups and downs. These days there are more ups than downs, though there is always insecurity about the future and even a certain fear of being alone. But, as Ellie taught Carl, I remind myself that “Adventure is out there.”

I hope that Ben and my dad are at peace, up, up and away from their illness and worries. I know that they are looking down and watching over me.