Aunt Eleanor with our Standard Schnauzer, Dulcie. Ellie was never a huge dog lover until she met Dulcie.
Today is my aunt Eleanor’s 91st birthday. I visited her in the nursing home. She has Alzheimer’s disease that has progressed to the point where, for the most part, she does not speak coherently, though she does seem to understand much of what is said to her. Her eyes do light up a bit when she sees me, and she smiles sometimes when I talk to her. I believe that her memories of me are floating somewhere in her mind, or I let myself believe that to cope with my profound sadness. A perfect moment was when I handed her the Mickey Mouse birthday card and asked if she remembered him- she smiled. Disney magic! Pixie dust!
We were so close and she has influenced much of who I am. I look like her and have many of her mannerisms. Ellie was the person who took me to the theater and ballet and inspired my love of the arts and of travel. Ellie took me to book signings when I was young, and I was always thrilled to meet famous and wildly talented people. Now, attending book signings is one of my favorite activities. For a long time, after her Alzheimer’s advanced and she could no longer accompany me, I got books signed for her. We looked at the books together, which she enjoyed despite the changes in her memory, and I enjoyed because it let me step back in time and relate to her in a way that transcended the Alzheimer’s. I remember how excited I was to bring her a children’s book written by Wendy Wasserstein. It was about a girl whose aunt takes her to her first musical. When I handed Wendy the book to sign, I told her that my aunt Ellie was like her book’s Aunt Pamela. She smiled and inscribed the book, “To Eleanor, who IS Aunt Pamela.” I am tremendously proud of my collection of signed books and CDs, and proud to honor the relationship that I have maintained with my aunt.
I tried to maintain our favorite activities and took her to the theater even as her Alzheimer’s progressed. I once took her to a Yiddish theater production where they gave out pickles at intermission. It seems that she immediately forgot the play, but she told people she had pickles and it was really fun. I think she pictured herself back in Brooklyn. I felt like that was still a good memory for her, and I was glad that in the moment, she enjoyed sitting through the show. After spending another day at the theater with her, I took her home, and when I got home there was a panicked phone message from her asking if we were supposed to see each other that day. She had completely forgotten the day. I could only reason with myself that at least while we were at the theater she enjoyed watching the play. I stopped taking her when she seemed to not have as much fun because she was easily confused and disoriented. It would have been selfish to keep trying to keep things the same when things had changed and I had to accept it.
Ellie was the remaining relative to whom I was closest and with whom I spent a lot of time. Although she is still physically here, our relationship is not the same. It hurts to see her and her largely diminished quality of life, though I try to be comforted by the moments that I make her laugh. It feels somehow disrespectful, but I see that in many ways I am grieving her loss.
She was a Spanish teacher and although my career has been varied, I have been walking in her footsteps for the past fifteen years. Today, I can’t help but think of the beautiful song Remember Me from Disney’s Coco. She would have loved it. I’ve put the song clip and lyrics here. The film dealt so beautifully with aging and loss, conveying that our loved ones are always in our hearts. With that in mind, I will spend this evening trying not to dwell on the Ellie I saw today and instead think of all of the wonderful memories that we shared. I hope that somewhere in her mind during her visit, she had a happy birthday and that she felt loved.
The lyrics from the song “Remember Me” were very emotional.
Remember Me Lyrics from Coco
Written by Kristen Anderson-Lopez and Robert Lopez
Performed by Miguel, featuring Natalia Lafourcade
Remember me
Though I have to say goodbye
Remember me
Don’t let it make you cry
For even if I’m far away I hold you in my heart
I sing a secret song to you each night we are apart
Remember me
Though I have to travel far
Remember me
Each time you hear a sad guitar
Know that I’m with you the only way that I can be
Until you’re in my arms again
Remember me
Where Do I Go From Here?
Written by Marty Panzer and Larry Grossman
Performed by Judy Kuhn as Pocahontas
The earth is cold The fields are bare The branches fold against the wind that’s everywhere
The birds move on So they survive When snow so deep The bears all sleep to keep themselves alive
They do what they must for now And trust in their plan If I trust in mine, somehow I might find who I am
But where do I go from here? So many voices ringing in my ear Which is the voice that I was meant to hear? How will I know? Where do I go from here?
My world has changed and so have I I’ve learned to choose And even learned to say goodbye
The path ahead’s so hard to see It winds and bends but where it ends Depends on only me
In my heart I don’t feel part of so much I’ve known Now it seems it’s time to start A new life on my own
But where do I go from here? So many voices ringing in my ear Which is the voice that I was meant to hear? How will I know? Where do I go from here?
May was a bit rough for me. May is ALS Awareness Month. Milestone dates and occasions are always significant. Even though it is not a milestone in Ben’s personal journey with ALS, it is an important time for me. I want and need to participate in the month to raise awareness of ALS, but I never feel like I really make a difference. I’ve been questioning so much about where I am and where I should be in my life. I feel like the sharpest pangs of grief have begun to subside and I have wanted to think that things have been steadily improving. And they have been improving in many ways. Unfortunately, the questions haven’t really ended, they are just different. Now, I question what I should be doing in terms of moving forward, in terms of my relationship with ALS, in terms of grief. Where do I go from here?
There is so much that resonates in this song. Since Ben “left,” as he referred to dying, I have grappled with where to go with my life. I stopped questioning how I survive after I lost my mom, which was my first major loss and was especially earth-shattering because we were so close and it was sudden. The first year, I went through motions. Just like animals Pocahontas described how the bears instinctively know what they have to do from season to season, I just kept going through motions, sometimes instinctively, sometimes lead by others, but never really thinking. Now, it is nearly four years since I lost Ben, and although I have gotten back on track and know that I have much to be grateful for, the setbacks really throw me and I am frequently anxious about my plan for the future and I rely on a wealth of wonderful memories to sustain me. When it comes to the future, there are people who are fine to say that they put things “in God’s hands.” I have never been one of those people, despite being a person who does have faith.
I have done a good job of reclaiming the things I always loved to do. I have resumed active theater-going, socializing and I even travel a bit. Still, there is an anxiety. I feel like I don’t have a strategy for my life. There’s a lot of worry and emotional analysis. There is also judgment. I have had to deal with the judgment of others, to my face or behind my back, but I also judge myself. Am I balancing past, present and future? How do I effectively help others? How do I best help people with ALS and their caregivers? Does that keep me in the past? How do I maintain my connection to the past and to Ben’s journey with ALS while forming a new life and hopefully finding love again? Will I find love again or will I be alone? As much as I would like to find a new relationship and have that kind of love, I don’t seem to have found a good strategy for getting there. Each night, I look at my photo of Ben that is my laptop background, I say good night to him, and wonder if I will ever find someone who “gets” me the way that he did. He doesn’t have to be a Disney prince, either. No matter how good I feel about the strides I’ve made, and no matter how many happy days I have, there is an uneasiness that keeps me from feeling contentment.
While some people think I should put more distance from the past and focus more intently on my vision for the future, being by Ben’s side as he bravely battled ALS changed me. Just as my dad’s cancer began to progress and Ben was diagnosed with ALS, I was launching a pet souvenir business, Pets en Voyage. I slowly put it aside because I couldn’t juggle full-time work, full-time caregiving and building a business. The business was a dream come true for me, and one Ben and my dad, the consummate dog lover, were so excited about. I always said that I would come back to it, but whenever I begin to revisit it, I find it a painful reminder of those days of illness and chaos. I am not letting go of it, but cannot seem to fully embrace it again, either. Not yet.
I was profoundly influenced by my role as a caregiver, and when I lost my dad and Ben, and I lost that role, I did lose a big part of myself. I feel most comfortable when I find ways to tap into that side of myself. This blog has been one way to sort out my experiences and spread the word about caregiving and ALS. I have been touched by the connections I have made and comments I have had from cALS (Caregivers of people with ALS) and pALS (people with ALS) in response to my posts. I was inspired by earn my Certification as a Caregiving Consultant but have not yet figured out how to use it more effectively, though I participate in various online ALS and grief support groups to lend an ear, share my experiences and persistent questions, and offer ideas to those currently struggling with caregiving.
When I was a caregiver, my role was clear: the goal was to keep Ben comfortable and get him the help he needed. There might have been twists and turns, and a lot of curve balls, but I had to come up with plans, and then back-up plans! Now, I’m just not sure of where to go and what to do for myself. What I know, and what I learned as a caregiver, is that I am a born teacher and caregiver. I also saw that I could be a strong advocate for my dad and Ben, but I did not seem to know how to use those skills for myself.
As a teacher and someone who spent more than 30 years in the field of arts and education, I love kids and could not help thinking about how difficult it must be for children to watch a parent or other family member navigate ALS and take on caregiving responsibilities. I have felt that my background could be useful to children who are affected by ALS in their families. A while back, I was able to collaborate with my local ALS chapter to conduct a small workshop for kids who had a parent with ALS. We did crafts, ate pizza and ice cream and talked. Click here to read my post about that experience.
Earlier this month, I had the supreme privilege of working with Hope Loves Company, an organization dedicated to supporting children whose families have been affected by ALS (click here to visit their web site). Hope Loves Company runs camps for children and their families- it’s a special opportunity to get away, participate in all kinds of activities, from hiking to fishing to music and crafts. Also, it is an opportunity to be surrounded by other people who share, understand and can commiserate about the experience of ALS and its impact on our lives. I was a facilitator of a workshop where the children made scrapbooks- some brought photos from home and we also printed photos from their activities during camp. I believe that going through photos can be a very valuable process- it’s a time to relive memories and remember our important relationships- and I was happy to hear the stories that the children shared with me. It was fun and meaningful, and it felt like I was exactly where I should be. I look forward to continuing my volunteer work with this wonderful organization.
It feels good to me to work children in this way. I want and need to follow a path that lets me discover ways to reach out to young people affected by this disease, but also to young caregivers in general. I’m just not sure exactly where to go or how to get there.
Now it seems it’s time to start
A new life on my own
But where do I go from here?
So many voices ringing in my ear
Which is the voice that I was meant to hear?
How will I know?
Where do I go from here?
I have lots of ideas, but I’m a worrier by nature, so I tend to identify the obstacles before I see a clear path. While it’s probably not terribly realistic that I will resolve everything during my summer vacation from teaching, it’s my plan to address ways to expand my work and relationship to ALS. Summer is always strange because it marks another year that Ben spent in the hospital and then left the world, so it’s good to have a focus. It’s especially meaningful to make that focus something that relates to him. Yes, I keep the dating thing on my mind, too, but that kind of strategizing seems to be more daunting to me.
I do welcome ideas and brainstorming, so please feel free to comment or email if there is a project you’d like to consider or implement.
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 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.”]
