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. But, 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 was obvious 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. 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 Ben was back in the magic. Goofy knew just what to do and there was nothing Goofy about that!
Thank you and Happy Birthday, Goofy! You are 86 years young, and a forever friend.
Today, May 20, is the Don’t Talk-a-Thon for Project ALS research. I am participating and donating to the cause to honor people like Ben, who lost their ability to speak because of this cruel disease, and to contribute to efforts to fund critical ALS research. Just last week, I wrote about how The Little Mermaid reminded me of how Ben struggled as his speech left him as a result of the progression of ALS. Much of this bears repeating.
It is devastating, and deeply personal, to elaborate on the impact of losing his speech, on him and on me and others who loved and treated him, but I feel very strongly that sharing these details helps to convey the physical and emotional effects of ALS and the urgent need to find a cure.
Ben was fortunate that his speech was very slowly affected. However, as the impairment grew, so did the ability to understand him. Since I communicated with him so much, I was better able to figure out what he was saying. However, phone conversations were extremely difficult. That added a lot of stress because Ben was alone when I went to work. When he finally agreed to having a medic alert device installed, there was a fear that if he activated the alarm, the response team would not understand or hear him through the speaker. Fortunately, the team also notified me if the alarm was activated, and I could run home.
Think of times that you have tried to explain yourself but your point was not understood. Frustrating, isn’t it? Imagine a day full of that. Imagine constantly feeling that. It’s not just the difficulty moving your mouth muscles and using your voice. It’s being understood, truly heard, feeling like you matter. ALS takes that away. Watching someone struggle and surrender, because they just don’t want to keep trying to express themselves, thereby losing their sense of self, is painful.
Suddenly, teams of doctors approached me, talking about moving ahead with a feeding tube and tracheostomy. These were things Ben had always said he wanted. Just the week before this crisis, Ben had spoken to his doctor about making arrangements for the feeding tube, so this was not a shock. However, seeing him with a Bipap mask on a ventilator, and knowing that the tracheostomy was imminent, was terrifying. Once in the hospital, Ben began to rethink his choice and wanted to have the time to make a firm decision.
Doctors talked to me about the need to devise a plan for communicating with him. We had not really considered these options because until this point, a tracheostomy was something to happen down the line. I called my local ALS chapter for advice and was told about communication boards where I could point to letters and commonly used words to help Ben express himself. I brought in paper and markers and made a chart with all the letters of the alphabet. I tried pointing to the letters so Ben could spell out words one by one. It was tedious, frustrating, and tragically sad. Ben hated it. He spelled out a little and then shook his head and stopped trying. Who could blame him? He wanted me to read his lips, but with the Bipap mask, his mouth was obscured. Also, his mouth muscles were not always cooperating, so reading his lips was not always possible.
His doctor suggested a new strategy of asking if each word started at the beginning of the alphabet, A-M, or the end of the alphabet, N-Z. Based on this, we literally recited the alphabet until he nodded that we hit the right letter. Imagine spelling an entire sentence like this, and then having an entire conversation like this. Sometimes Ben got frustrated that I said the alphabet too slowly, he understandably lacked the patience to spell the words out. Ben did prefer that we try to read his lips, and we tried. Since I was with him so much, it was somewhat easier for me to figure out what he was saying, but it was not always possible. There was very little small talk. A long blink was his way of sending me a kiss.
In the hospital, there was also no ability to call or text him. And, there was no ability for him to call for help in the hospital. People wondered why I spent 16 hour days in the hospital, and stayed over at his request, but it terrified me as much as it did Ben that he could not call for help. His hands did not allow him to press the call button and the variations of the call button also did not work. The nursing staffs really were great and they did stop by frequently, but I know that I will never fully be able to understand the depth of Ben’s fear and feeling of helplessness. They were very patient with my phone calls and requests. Ben was at least fortunate to be able to nod or shake his head as they tried to determine his needs. Many with ALS are not.
Basic conversation was challenging enough, with Ben having to spell out the simplest of requests, like blankets or asking me to play a specific playlist on his iPad. But, Ben was also making very serious decisions about how he wanted to proceed in life and death with ALS. I will never forget the meetings with his medical team where they discussed his options: life with a tracheostomy and ventilator at a facility or hospice.
Ultimately, Ben spelled out this message for his medical team:
I took a photo of it and texted it to his daughter, who shared it with the rest of her family. I felt that rather than my conveying a message, she should know her dad’s exact words. I don’t really know why I kept this horrible message, but I simply had to.
Once he decided to go to the palliative care/hospice unit of the hospital, we had to choose the day that he would separate from the ventilator. I remember him spelling out for me, “When is a good day to die?” It broke my heart to write that and to have to grapple with that. Try to imagine what it must have been like for Ben to tediously spell that out. I still can’t. You can’t either. I’ve said it before and I will always stay in awe of his bravery.
In his last days, I did try to read his lips as much as possible. On the morning of the day that he left us, he asked to say our vows, and he mouthed them and his, “I do.” It is heartbreaking to think of it, and yet, it gave him joy, and it does give me joy to know that he had a beautiful last day filled with love and music.
I share this with you because learning about the actual experiences of people with ALS and their loved ones is, in my opinion, the most heartfelt and accurate way to begin to explain the tremendous cruelty of ALS and the very specific ways in which it affects patients and their loved ones.
Ben was fortunate to have had his voice for five of the nearly six years that he battled ALS, even though it was impaired. His physical voice gave him an emotional strength. When he lost the ability to be heard, he felt invisible and terribly vulnerable. Many people with ALS lose their voices very quickly and live with that feeling for several years. The Don’t Talk-A-Thon asks people to take a vow not to use their voice for at least an hour. Just an hour. Think of the trivial things that we often say over the course of an hour. Think of the many silly texts we send over the course of an hour. Those are luxuries for someone with ALS. But, those little things convey who we are and envelope our personalities. ALS robs speech but we cannot allow it to rob dignity. As caregivers, family members and friends of people with ALS, our patience, creativity and compassion helps people with ALS have a voice and feel significant.
By supporting ALS research through efforts like the Project ALS Don’t Talk-a-Thon, we can be the voice for people with ALS, and contribute to efforts to find a cure.
If you would like to learn more, participate in, and/or contribute to the Project ALS Don’t Talk-a-Thon, please click here.
Today is Mother’s Day. My grandmother used to say 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. Living in a house with Grandma, I feel like I grew up with two mothers, and I would like to honor them today.
My mom died of a sudden, massive heart attack at the age of 59. She was way too young. The day before she died we were playing outside with our Standard Schnauzer, Dulcie. There are no hospital memories, or memories of seeing her ill. I’m grateful that my last memories of her are of her laughing. However, there was no opportunity to say goodbye. She was just gone.
People often described Mommy and me as being 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 when we were out shopping. 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. The best shopping I ever did was in her closets and drawers. In fact, I still have some of her clothing and jewelry. More than once, sales people at stores would approach me and ask, “are you the person who called your grandmother for fashion advice?” They found that admirable. If they knew her, they would have called her, too! 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. At times, it was also difficult for me to feel that I had two moms telling me what to do, and that my mom seemed to have a supervisor. But, Grandma and I had a special bond and an unconditional love for each other.
Grandma doing my hair. She crocheted my dress- so 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. 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.
My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every 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.
My mom was at her core a natural, nurturing caregiver, at a time when there was no real acknowledgment of the role of caregivers. 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.
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.
Grandma and I around 1990
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, she wanted to protect me from the fact that she was dying.
When I was the sole caregiver both for Ben and my dad, I often thought about how hard my mom worked, and that served as a tremendous inspiration. Ben admired the closeness and devotion that we had. He saw it in my relationship with Daddy and felt it as I shared stories, rituals and memorabilia with him.
As time has passed, I recall many wonderful memories of my mom and Grandma and our time together. So much of 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!
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 and treasure them always.
May is ALS Awareness month and despite the popularity of the Ice Bucket Challenge, it still is not a well-known or understood disease. In this post, in my Disney way, I want to do a little more to describe the progression of ALS as Ben expressed his experience and as I witnessed it.
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, 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.