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.
Today is Memorial Day, and on this day I honor my dad, Jacob, who left this world on February 2014. I salute my dad and all the men and women who have served this country. Of course, Memorial Day is to honor those who died in service, and mercifully, my dad did not. However, he often reflected on friends he lost during the Korean War, and this day was important to him, as it should be to all of us in this country. In keeping with the name of this holiday, I will use this post to recall memories that my dad shared with me that are related to his own experiences as a child during WW2 and then in the USMC.
My dad was a boy in Brooklyn during WW2 and loved to tell stories about the neighborhood. This was a picture he had of my grandfather and neighbors. When I look at it, I can hear my dad’s cute giggle as he told this story: There were concerns that we would be bombed and these gentlemen were the team that was tasked with extinguishing fires in the case of a bombing. My dad never stopped laughing as he pointed out the little bucket, which would need constant refilling, and the short hose that would not reach very far, clearly not the most effective method for dealing with the situation!
Brooklyn, sometime during WW2. My grandfather is the second from the right. Look at how proud and serious the men are!
My dad knew so much about WW2 history. He had tons of books and I loved adding to his library. I still miss my visits to bookshops to see what the new releases were, calling him to read book jackets to see what sparked his interest, and being so proud when I found something new and intriguing.
Daddy was such a proud Marine and a real patriot. It upset him that over the years he saw less and less flags flown around our neighborhood. He wore his USMC cap so proudly and loved to run into other veterans and share stories. But I was his Private Benjamin. The first time I drove him to the VA Hospital out in Northport, Long Island he just shook his head when I clapped and waved as the guard at the gate saluted us when I flashed Daddy’s VA card. Daddy saluted, shook his head and laughed. Although he was not an observant Jew, his Marine Corps experience, where he was one of 3 Jews, gave him a sense of pride in his religion and he did not tolerate any discrimination, gaining the nickname of “that crazy Jew” because he would fight anyone who even looked like they were going to say anything derogatory. He trained down south during the days of segregation, and he remembered with sadness and contempt the way he was not allowed to sit on the bus with his African American USMC buddies and how disgusted he was by those attitudes, which were so different from up here in the north.
Daddy at Mitchel Air Field on Long Island.
The Cradle of Aviation Museum and events at Mitchel Field were favorite destinations for my dad. Since he was trained as a pilot, he loved to see the old planes. I went there with him a few times and although I cannot say I shared his enthusiasm, I loved to see him so happy. And, I felt a lot of pride to see him meeting other veterans and sharing stories of their time in service. I proudly display in my apartment his model of the F7, the plane he flew, along with one of his USMC caps.
In more recent years, Daddy knew the young guys in his neighborhood who returned from deployment. Some of them had trouble getting back into life and my dad was concerned about them. I was always surprised by how much he knew about them, but he took the time to really talk to them. We read a lot about the effects of multiple and extended deployments. My dad understood it well and he felt for these “kids,” as he called them. I learned so much about compassion from my dad.
[bctt tweet=”…it’s even more important to remember those people who did care, to honor and support those people who do, and to reaffirm our love for this country and determination to honor our founding principles.”]
Daddy loved when people spotted him in his USMC cap and said, “thank you for your service.” He said it to any veterans that he met, too. I had the privilege of meeting many veterans when he was at the VA hospice in Northport. They were proud. They had many stories. And they were still fighting for their lives, in a different way. They were patriots and they inspired me.
You could take the man out of the USMC but you couldn’t take the USMC (or the camouflage) out of the man!
I’ve been missing my dad more than usual, even though I can honestly say that never has a day gone by that I don’t think of and miss him. I miss his laugh, his kindness, his advice, his sense of humor, and his history lessons. I wish that I could talk to him about what seem to be daily crises in our country’s leadership, but I’m glad he’s not witnessing the current events in this country. He’d be devastated and frightened for my future and the future of the next generations, and he would also be reminding me that history does indeed repeat itself.
Memorial Day is a special time to pay tribute to those who lost their lives in service to this country, to make things better for us. It saddens me to feel that our current administration does not really care about making things better for its citizens. But, maybe that’s why it’s even more important to remember those people who did care, to honor and support those people who do, and to reaffirm our love for this country and determination to honor our founding principles.
Semper fi, Daddy! I love and miss you!
A Disney note:
Since I do make Disney connections in most of my posts, I would like to recommend:
Disney During World War II: How the Walt Disney Studio Contributed to Victory in the War is a fascinating coffee table book published in 2014. Although it was published after my dad passed away, I bought the book because it reminded me of my dad and how much we embraced each other’s lives.
Walt Disney Treasures: On the Front Lines, is a 2-disc DVD set, released in 2003, which highlights Disney’s contribution to American military participation in World War II. This collection contains 32 short films used for training, propaganda and education. This set also contains the feature-length Victory Through Air Power, a propaganda film not released since its 1943 theatrical debut. My dad was always amused at my ability to find this connection between my love for Disney and his love for WW2!
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.
Today is Mother’s Day. My grandmother believed that every day should be Mother’s Day. And, the truth is that when my mom was alive, every day WAS Mother’s Day. We were so close that we did not need an actual holiday to celebrate that fact. After I lost them, I can’t say that this holiday was like other milestones in terms of evoking much sadness. There was a feeling of not belonging, and the sting of realizing that I didn’t have the close and unconditional love of family anymore. Yesterday, I saw a lot of people carrying flowers and celebrating the occasion, albeit a day early. It hurt more than it has because I realized that I have lost all of the people whom I had celebrated throughout my life. I never forget all of the love that I currently have in my life, but there are times that I don’t like to face that the people I loved the most only exist in my memories now.
I think about the importance of mothers in Disney films. Often, they are not present, having died at some point in the childhood of our favorite characters. Who can forget the pain of Bambi’s realization that he has lost his mother? The power of a mom’s life remains steadfast in the lives of our beloved characters. The films show us that people we love and lose stay close in our hearts. This is such an important message for children who are caregivers and are grieving. I previously shared this clip from Disney’s live action Cinderella, where Cinderella’s father advises her that they must always cherish their home because her mom was the heart of it and they must honor her. This scene touched my heart. I cherish my memories to keep my mom’s spirit alive and honor her. I get my childlike enthusiasm from her and, I believe, my natural caregiving skills, which even extend to my students. Of course, I embody her love of Mickey Mouse and all things Disney, but I hope that in some small way I have followed her example as a person. I do know that she is always with me. But, as I have also said before, as fortunate as I am, sometimes memories aren’t enough. Today kind of feels like one of those days.
My mom and I were very close, or, as everyone said, attached at the hip. My dad always said that he loved to listen to us giggle. She was a child at heart and I get that spirit from her. She loved Mickey Mouse and Paddington Bear and she loved children. Children loved her, too. She was a teacher at our local early childhood school and she loved when kids would greet her around the neighborhood. People laughed that we spoke on the phone many times every single day. We went to the theater and ballet together. Our excursions to NYC from Long Island for the holiday windows and the after-Christmas sales were epic, strategically choreographed events. We loved each other unconditionally and had so much fun. Frankly, I could not imagine living after she died.
Grandma and I were also very close. From the time I was a child, I was in awe of Grandma and her elegance. I loved her sense of fashion. She had a wonderful way of putting together colors and fabrics and styles. I still have some of her clothing and jewelry. The best shopping I ever did was in her closets and drawers. When I’m feeling lazy about dressing up or putting on make-up- it happens rarely, but it happens!- I hear her warning me that I never know who I am going to meet and I should always look my best. Clearly, she was hoping for a nice, Jewish Prince Charming. My fairytale was not quite exactly her idea of the “tale as old as time,” but Grandma always seemed to understand that I danced to my own beat. Sometimes we frustrated each other, particularly when I challenged her ideas of an ideal life. But, we had a special bond and an unconditional love for each other.
Grandma doing my hair. She crocheted my dress. She was very talented! I get my creative streak from her.
Grandma had four brothers and a sister, my great-aunts and great-uncles, and I loved them all dearly. I loved spending time with my great-aunts and great-uncles. Losing Grandma and my older relatives left a huge void in my life. However, through our loving relationships, I developed a tremendous appreciation of and compassion for elderly people that I have to this day.
Grandma was very artistic and I inherited her abilities and passion for crafts. She crocheted many aphgans and sweaters, skirts, dresses and ponchos. I remember choosing wool colors with her and how each item had to represent the gift recipient, yet had to be timeless and classic. I can see my own shifting tastes as I look at my childhood aphgan in its pastel colors and then the gray, maroon and cream colors in my college aphgan. I remember waking up in the morning covered with the squares she made while I was asleep. My dollhouse and dolls even got aphgans! I still have many things that she made. They hold such beautiful memories of time spent watching her and learning how to crochet. Eventually, she helped me to make an aphgan of my own. Ben used it often. Grandma’s talents extended to the piano, and she inspired me to learn how to play. I never played as well as she did, but she helped and encouraged me to play, and I’ve kept some of the sheet music.
When I was a caregiver, juggling responsibilities for Ben and my dad, I realized how hard my mom worked, at a time when there was no real acknowledgment of the role of caregivers. My mom was at her core a natural, nurturing caregiver. She took care of my dad, brother, our dogs and me, as well as Grandma, but was also responsible for looking after my great-grandparents, great-aunts and great-uncles, and even my cousins. She even knew the treats that my friends liked and made sure to have them on hand at all times. She took care of everyone in myriad ways. My mom was the most selfless person I have ever known.
My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.
I realize now that in many ways, my own caregiving days started when my mom died. I followed her example and began looking after Grandma, my dad, my great-aunt who was in a nearby nursing home. I was constantly on the phone with Grandma and my dad and helping them tend to various chores. I also loved and kept in close touch with my great-aunts and great-uncles. I went home every weekend to help in any way I could, and sometimes that was simply keeping everyone company and making them laugh. My grandma did not want to be cheered, and I understood that. I don’t think that anyone fully comprehends the loss of a child unless they experience it. My aunt, my mom’s older sister, also visited every weekend. But, after a sudden death, everyone floundered and tried to pick up pieces while still in shock and feeling profound sadness at the loss of the key person in our family. And, as in any family, the dynamics led to tensions that were, at times, explosive. I found that, just like I believe my mom would have done, I spent my time with them being a cheerleader and my private time at home collapsing in grief. Sometimes I came home, sat on the sofa and cried, and at other times I dropped my bags and took myself to a movie just to escape.
When Grandma was ill, I helped with her caregiving, and, although I was not her primary caregiver, I was the one she usually relied on for comfort. At the same time, although I was in my thirties, she wanted to protect me from the fact that she was dying.
As time has passed, I think mostly of the wonderful memories of my mom and Grandma and our time together. So much who I am and what I do reminds me of them. I get my Peter Pan-like inner child spirit and love of Disney from my mom. You won’t be surprised that one of my favorite memories is when my mom called me from Walt Disney World exclaiming, “Abby, I met Mickey!” Every time I bake I feel Grandma with me, and she is a part of all of my creative and artistic endeavors, as well as my fashion choices.
Making humentashen is a tradition that started a long time ago!
Ben and I had no children together, but he had three daughters, so I suppose I can say I was a stepmom, though I only had a brief relationship with one daughter that I believed was closer than it turned out to be. I would like them to have been there more for their dad, but I knew that interfering would have added more tension to Ben’s already stressful life. I made no demands and have never had any expectations of them. It’s a shame, because I would have loved to be an active stepmom and would still like that.
Now, I am a devoted mom to my cat, Tinker Bell, as I was to Disney and Tiffany. My mom- well, my whole family- loved our pets, so their influence was present even as I cared for Disney and Tiffany as they coped with several illnesses. Tinker Bell has been with me for almost three months and she has realized that hers is a home full of love. Today, as on most days, she is curled up next to me, napping and then waking up to chat and, I imagine, say “Happy Mother’s Day!”
My mom and our Standard Schnauzer, Dulcie. Miss them both!
On Disney’s “Gotcha Day,” February 18, 2019 at NYC’s Meow Parlour
There is not a day that I don’t think of my mom and Grandma. I am proud to honor them on Mother’s Day, though in truth, I celebrate, treasure and miss them always. I wish a Happy Mother’s Day to mothers of all creatures, great and small, human and otherwise.
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.”]
