More wisdom from Walt. I love to read- all kinds of books. In more recent years I have read lots of self-help books related to illnesses, caregiving and grief. In the past year, when I decided to try online dating, I’ve read what I believe are too many books about dating and writing online profiles. They’re not helping! But, I just completed a fiction book that nurtured my soul more than any nonfiction, self-improvement book, speaking a lot of truth about own life without Ben. It is called, Still Me, and it is the third book in what is now a trilogy by JoJo Moyes. It was enlightening, entertaining, validating and inspiring.
The first book in this trilogy is called, Me Before You. It tells the story of a young woman, Louisa, who can’t find herself, but she takes a job as the caregiver of a young man, Will, who is a paraplegic as a result of a car accident. In the course of the story, they fall in love, and, as you can imagine, it is complicated.
I remember being in a bookstore with a friend, and when I looked at the book, he said it was great, but I wouldn’t want to read it. Of course, that only intrigued me. The book was a best seller when Ben had ALS. The book takes you into Will’s experience in this body he doesn’t recognize and a life he cannot accept. Ben had always said that he wanted to do anything to stay alive, whether feeding tube or tracheostomy, but there was always the possibility that he would change his mind. I’m an emotional person, so after I read the book description and reviews, I was not sure how I would feel about reading a book about making a choice to life or die when I was dealing with ALS and losing Ben. On the other hand, I thought that the book might offer insight into the thoughts of someone who is contemplating his quality of life. I decided to read the book. It was a good decision. It was an absolutely beautiful book with a lot of love and interesting perspective. I related to Louisa’s caregiving experiences and to many of the situations they endured. In many ways Me Before You helped me to come to terms with accepting whatever decisions Ben would make about how he chose to live and die with ALS. That said, everyone has to make their own decision about whether they want to delve into reality in a book rather than a complete escape. The book was also made into a film, and, as is often the case, the film is not as good as the book. However, if you’re not sure about the book, but you’re curious, you might want to try the film.
I was one of the readers who longed for a sequel, and, thankfully, Jojo Moyes responded with Me After You. As you can probably imagine from the title, it tells the story of how Louisa deals with grief and how she ventures forth in the world to try to find herself, stepping forward and falling back. Again, I was looking for answers, for experiences to relate to, for validation of my own experience. I found them, and enjoyed following Louisa as her story continued. Sometimes, it’s just good to know that the story continues at all, even though it’s a fictional character!
In the third book, Still Me, Louisa is adjusting to her life and carrying Will with her in her heart. She hears his voice as she makes decisions. She looks for ways to honor him. That said, she moves into new romances and takes risks in her life, making some wondrous discoveries about herself. I related so strongly to Louisa creating a new life while finding a place for Will. I was emotional for the rest of the day after I finished the book, and it has stayed with me, in a good way. I, too, am often guided by Ben. I’m not sure what my happy ending will look like. I know that I hope it includes romance because the relationship that I had with Ben brought so much to my life. The important thing was that the trilogy of books made me feel like that my feelings are normal. The process of caregiving, loss, grieving, and living takes many twists and turns and it did change me. However, just like Louisa, I can move forward and keep Ben present. I have already made many discoveries about myself and taken many steps-and stumbles- in the nearly three years since Ben left this earth, and, despite a general lack of confidence, I continue to live and love.
I am grateful to Jojo Moyes for helping me to feel positive and cautiously optimistic. I wish she could write a happily ever after for me!
The books are not heavy, difficult reads- they are light and yet deep, and even filled with humor. The characters and relationships are heartwarming and relatable. As Walt said, there is a lot of treasure within them. If you’d like to gain some insights, while probably shedding some tears, this trilogy of books may be thought-provoking, inspiring and comforting. Check them out. Let me know what you think. Please share your reviews in the comments.
Disney Pixar’s film, Up, is so beautiful, so poignant, and so adult in its messages on life, love, loss, grief and the memories that sustain us. Although I suspect that most readers of my blog are fans of Disney, even if you do not share my passion or are not a lover of animation, I highly recommend that you watch this film. I also recommend that you have tissues nearby when you do.
I relate so strongly to this clip, in which Carl looks at his deceased wife Ellie’s scrapbook. I, too, am surrounded by the blanket, towel, calendars and framed photos, as well as nostalgic items that keep Ben with me. As you see at the end of the clip, Ellie wrote “Thanks for the adventure. Now go and have a new one.” Although I have begun the process, I have had a hard time turning the page of my scrapbook and filling the blank pages with adventures that do not contain Ben.
Just as Carl does throughout the film, I look at and talk to Ben’s chair, I ask him questions, I do things that he would have done and buy things that he would have liked. That has kept him close to me. Carrying Ben in my heart is positive and comforting amidst the sadness and unsettling feeling of experiencing life without him. Lately, however, I find that I am feeling a lot of anger. I am angry at the things that he is missing, the life he was cheated of, and the time that was taken from us. As I have written in prior posts, summer is always emotional for me because Ben spent his last summer in the hospital, ultimately choosing to separate from the ventilator at the end of August, 2015. Anger is a new phase in my grief. It’s very upsetting and I’m trying to fight it with gratitude for the time that we did have.
Photo collage blanket.
Last summer, I struggled to push myself to make some plans. It was uncomfortable, but I specifically made plans to be with good friends, which was something I did miss when I was a caregiver. It was a good summer and, the truth is, I spent a lot of it talking about Ben.
As this summer approached, I was proactive in planning. I did not feel the same dread of summer because I have come to accept the ebbs and flows of grief and I know that my thoughts will simply drift to the memories of that last summer in the hospital. I knew as I began to make summer arrangements that I would miss Ben and that things would not be the same, but I have been integrating those feelings into my daily life. I have long been wanting to meet and interact with otters and penguins, and I discovered that the Georgia Aquarium had encounter programs with both of these cuties, and even with dolphins, another love. So, I decided to follow my whimsy and make one of my dreams come true. I booked a two-day trip to Atlanta to meet the animals I plaster all over my Facebook page. I went by myself, which, I think, was a statement of independence to myself that I needed to make. This excursion might not seem like much of an adventure, but for me, it was pretty monumental.
This was not my first excursion without Ben. I went to London in 2016, but London was a place that was special to me way before I knew Ben, and we never went there together. I wished he was there and I had moments of loneliness, but I went to Abbey Road because of his love of the Beatles, truly feeling his presence there, and I took pictures of things that I saw through his eyes, although I’d been to England many times. I did make a dream come true when I went to Washington, DC this past spring to see the cherry blossoms in bloom. It was bittersweet because it was our anniversary and I knew that Ben would have loved visiting the monuments, and I missed him but carried him in my heart, seeing everything through his eyes as if he was walking beside me. I have noted each of these excursions as milestone in my grief and some form of progress, though there was a sadness and loneliness in everything. My adventure in Atlanta was the first time that I felt anger.
As I walked through the Aquarium, which truly immerses you in undersea life in the most wonderous way, I not only missed Ben, but I was angry that he was cheated out of experiences like this. I remember going to the Boston Aquarium by myself and crying when I saw the penguins because it wasn’t the same without him. Nothing was. I had moments of tears at the Shedd Aquarium in Chicago last summer thinking about how Ben would have loved the dolphin show. I even bought a tiny snow globe at the aquarium and I placed it on a shelf that I have filled with special things of Ben’s so that, wherever he is, he knows that I am always thinking of him. But at the Georgia Aquarium, as I marveled at the glass tunnel with fish above and to my right and left, I wanted him to be as mesmerized as I by this magnificent place, delighting in the river otters and the sea otters, and giggling with him as the penguins waddled around and belly-flopped into the water. We would have joked about the turtles, recalling our loving inside jokes. He would have been as thrilled as I was to see all of the animals in the magnificent setting. I noticed how attentive the aquarium was to people with disabilities, with designated viewing areas for people in wheelchairs, and Ben would have loved scooting around the space. This time, I was not just sad, I was infuriated that Ben could not enjoy this and that we could not enjoy it together. I had conversations in my head with Ben, took tons of pictures as he would have done, and looked at everything as if he was with me, but my emotions were different this time. It’s just not fair that ALS cheated him out of so much life.
It was a difficult decision to register for the penguin encounter in Atlanta. Ben and I loved penguins. Our first weekend getaway was to Mystic, Connecticut and we loved the aquarium there. We absolutely adored the penguins, who were a part of the dolphin show. Penguins became very special to us and we had all kinds of penguin-themed memorabilia. I had arranged to take Ben to a local aquarium for a penguin encounter for his birthday in 2015. I booked an ambulette to take us and even an accessible hotel room in the hotel next door to the aquarium. The aquarium was kind enough to make special arrangements to accommodate us because the penguin exhibit was not wheelchair accessible. Unfortunately, the winter weather was brutally cold and Ben was afraid to go outside. Most unfortunate was that we never had another opportunity to make that trip.
Ben in healthier days in Woodstock, Vermont, 2001. We loved it there.
As much as I wanted to be face to face with a penguin, I found myself asking if I should participate, when Ben could not. Would I even be able to enjoy it without him? I decided to register and just go with my emotions. I did not exactly feel guilty about it, but I did not feel entirely comfortable with it either, and this is frustrating.
Through a series of events, I ended up doing the penguin encounter twice. The groups in all of the encounters were small- a couple of families and couples. I wanted to be one of those couples with Ben. Greeting and touching the penguins was exciting- they are adorable and fascinating and I loved seeing the bonds between the animals and their trainers. All I could think of was how much Ben would have loved meeting a penguin. I let myself participate as if I was participating for both of us. I know the clichés about life not being fair and Ben wanting me to be happy. I believe that he was watching. And, I have to believe, as Ellie wrote, that Ben wants me to have new adventures. Unfortunately, this was an adventure that we were supposed to have had together and that made it harder to enjoy with abandon.
When I saw in the gift shop a bag of jellybeans called “Penguin Eggs,” I had to take a picture- as I know Ben would have done- we loved jellybeans, and I know that he would have forever more called jellybeans “penguin eggs.” In my head, I will smile as I do that, too, and I will think of Ben and know that he is watching and smiling. I am determined to fight the anger.
The dolphin encounter was bittersweet. The first dolphin show Ben ever saw was during our first getaway in Connecticut, at the aquarium in Mystic and it was a blast. I had seen other dolphin presentations but seeing this one with Ben was particularly fun because he and I unabashedly let our inner children shine. I did feel his presence during that encounter and I believed that he was watching me. I know that some people do not believe in this, but I do, and it gives me comfort. I shared my joy with him and kept him with me in my heart, so he felt a part of the experience. I made mental notes of how he probably would not have been able to get to the training area and pool because they did not seem to be accessible. Then, I thought about how, just as he did in Walt Disney World, Ben would have focused on what he COULD do rather than what was not possible. He would have been enraptured watching the dolphins in their habitat.
Otters are my thing, but Ben would have been happily teasing me and celebrating my joy. I seem to be able to enjoy things more if I feel like I am sharing with him. Maybe I’m deceiving myself, maybe it’s just a way that I cope with my exasperation and sadness at his absence.
When I watch Up and see Carl and Ellie get old together, I have a hard time recovering from the tears. Before his ALS diagnosis, when Ben saw elderly couples holding hands and strolling along, he would always comment that one day we would look like that. When I watch Carl talking to Ellie after she is gone, greeting her photograph and looking at her chair, I see myself and how I still look at Ben’s chair and talk to him, and greet his picture that is my laptop background. I’m not comfortable with this angry phase that I’m experiencing. I prefer to focus on Ellie’s, “My Adventure Book” and revisit the pages of my book that Ben filled with so many memories and much love- even during the ALS days- and know that those pages will never disappear or be erased. Ben and I never talked about what my future would look like without him. On occasion, he would laugh and say that if I ever met anyone else, that he would haunt me like the Grim Grinning Ghosts at Walt Disney World’s Haunted Mansion. We never seriously talked about it. So, I’m on my own trying to carve out a future that gives me joy and honors Ben’s memory. Just like Carl, even though I am struggling with old and new emotions as I move forward, and I need to keep Ben very present, I am filling the pages with new memories.
Up makes me cry a lot, but it is a beautiful film with a lot of hope. The positive perspective it lends to grief and to living with and past a painful loss can help lift you Up!
I also recommend the Georgia Aquarium and its encounter programs. It may not have a castle, but it is a magical place!
A PhotoPass photographer caught this moment in front of the Castle at Walt Disney World. It was actually the first time we returned after Ben’s ALS diagnosis in 2010
Once again, I am faced with the conflicting emotions of joy that school is over for the year, and sadness over the memories of the summer of 2015, Ben’s last summer. We spent it in the hospital, where he ultimately succumbed to ALS. Today, July 6, marks the third anniversary of the day that Ben had a respiratory crisis and we ended up in the Emergency Room at Mount Sinai Medical Center. As I write this post, I am cuddled up with Ben’s favorite Disney throw, with Sully and Mike from Monster’s, Inc and personalized with his name. I covered myself with it last night, too. On these kinds of anniversaries, I refer back to my blog post from last year year. I can’t say that much has changed- it remains a somber day when I prefer to be by myself with my thoughts and our photos, and maybe watching Monsters, Inc., which always gave him such delight.
For me, this is simply the date when everything changed. I woke up this morning thinking about how I woke up on this date three years ago and Ben said he could not breathe. I think of how we waited for the ambulance, not knowing what would happen. How ironic it is that today is International Kissing Day, because on that day he was connected to a ventilator and his mouth was covered with the Bipap mask. For the next few weeks, before he agreed to a tracheostomy, our way of kissing was to blink our eyes tight and then I would throw him a kiss- he couldn’t use his arms or hands to throw one back.
I remember that despite the frenzy of an Emergency Room, it did not occur to me that I could lose Ben at that time. I was kept very busy as the health care proxy and the only family member present. I emailed and texted his family and our friends and answered a lot of questions. I tried to stifle resentments towards family who had lots of questions, suggestions and judgments but had never been there for him as his ALS was progressing. I was surrounded by people but felt very alone. I talked to Ben but had difficulty reading his lips through the mask. And, he slept a lot, leaving me to my own thoughts about what would happen next. I shared all of this in last year’s post.
I did not make any plans for today, not knowing how I would feel, but allowing myself to be okay with anything I chose to do. I have learned that I cannot predetermine what’s right for me in these circumstances. I don’t want to hear that I should keep living, or I should make plans to distract myself, or that Ben would want me to be happy. Sure, it’s all true, but it doesn’t matter. Today, my head is swirling and I just want to think about Ben, and that day. It’s an odd feeling that nobody else would even remember this date, and I wouldn’t expect them to. That does, however, underscore that when this crisis hit, it was just Ben and me. And, as awful as it was, I was there for Ben, he knew he could rely on me, and there was a lot of love and trust. We may not have been a real Disney prince and princess, but the profound love and caring that we expressed throughout his experience with ALS gave special meaning to the lyrics of So This is Love, from the original, animated Cinderella.
Yesterday, I went for a walk in Central Park. I love walks through the Park, despite the heat, because I have my music in my ears and I can let my thoughts flow. I have my route, and I headed for Belvedere Castle, from which you can look down and see lots of turtles. Ben and I loved turtles and a turtle was his icon in the original messaging program that we used. I was shaken to find that the Castle was under scaffolding and closed to visitors. It was so important for me to see those turtles yesterday because of today’s anniversary. Not knowing what to do, I proceeded on my walk and was lured to a little gazebo that was right on the water. I had never walked there before but I was drawn to it. There I saw several little turtles! I do look for signs that Ben is with me, and this was my sign. I took many pictures and just watched them for a while, talking to Ben in my head and knowing that we would have been so happy to have discovered them, at the same time feeling that he was with me. Further on in my walk, I found the fountain that I never seem to be able to find when I’m looking for it. I tossed some coins and made wishes (see my post on wishes), shedding a few tears. I try my Disney best to be optimistic even when I’m sad. Sure enough, when I walked to the water by the fountain, I saw more turtles and even some fishies. I have never seen so many turtles at the Park, and I believe that they carried the message that Ben is watching over me and that even as I keep moving forward, he will maintain a presence.
This date may always be a difficult day. In my mind, it will always be thought of as the day that everything changed. I see all kinds of social media posts about International Kissing Day and I think that it was the first day when I couldn’t kiss Ben.
I do notice that the intense and debilitating grief has shifted. I know that today’s fog will lift, and that I will also remember days in the hospital that, despite the devastation and horrible decisions, were filled with kisses and with love, music and even laughter. Just not today.
Today, here in America, we celebrate Independence Day. In our challenging political climate, I cannot help but reflect on how our independence seems so fragile. I think about my dad on holidays such as these, and how he, the proud Marine, lamented that less and less families displayed a flag. As much as I miss him, I am relieved that he is not living through these times because I firmly believe that it would make him physically ill. He would be worried about my future, but at least now he is watching over me.
I also can’t help but think of independence as it relates to ALS.
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that ultimately results in the loss of voluntary muscle action. Patients are affected differently in terms of progression, but people may lose the ability to speak, eat, move and breathe in any order of events. Ben’s initial symptoms were weakness in his legs and lack of balance. Next, he struggled with the use of his arms and hands, then his ability to chew and swallow. His speech was impaired though he did not lose it until he had a tracheostomy, and he got a feeding tube at the same time.
Imagine the loss of all of those abilities that we take for granted. The Project ALS Don’t Talk-a-Thon underscores the physical speech while calling attention to its dramatic impact of a loss of self-expression on our psyches. People with ALS cannot independently take care of daily life activities. That is a physical and emotional struggle. I was always struck by Ben’s sense of humor and determination to devise strategies for managing on his own. He was quick to purchase things like adaptive zipper pulls and computer accessories that allowed him to function at least somewhat independently. He loved his scooter and electric wheelchair because they gave him the freedom to get around and be outside. As he lost dexterity in his hands, it became more difficult for him to steer, but he could be out and about. He tried hard to avoid, for as long as possible, his loss of independence.
As Ben’s caregiver, as he became increasingly dependent on me, I, too, lost independence. This was an emotional battle for both of us. Even within couples and families, each person maintains a certain level of independence. Ben and I lost that independence, albeit in different ways. I could no longer take time for myself. And, I witnessed Ben’s struggle and was consumed with trying to accommodate his efforts to maintain some level of independence. Ben and I were dependent on each other in this world in which our relationship was shifting beyond our control and we desperately wanted to maintain some semblance of who we were at our core, before ALS. After I lost Ben, I was frequently told that it was good that I could now reclaim my freedom. Only now, nearly three years later, am I becoming more comfortable with my independence. Still, I blog and maintain my deep connection to people who are experiencing ALS, as patients or caregivers. My experience left me with some battle scars, but it also left me with a tremendous appreciation of and perspective on independence.
Walt Disney said that “Mickey Mouse is, to me, a symbol of independence.”This was said in the context of the success that it brought him and his company, and the freedom to pursue his dreams. “Independence” is vital to our existence in many literal and figurative ways. On Independence Day, we honor this country and its founding principles. Let’s be grateful for independence. Let’s fight to preserve those values that are currently under attack and being chipped away and could potentially impact on the medical care and research that strives to help make ALS more manageable and, ultimately, to eradicate this cruel disease. In my practical way, I contribute, through donations and the raising of awareness about ALS. In my Disney way, I continue to wish for and dream about a cure for ALS and all other diseases.
I always picture Ben like this, in his chair at his desk.
In honor of Ben’s love of this film, here’s a pic of him with one of his best buddies during our visit to Walt Disney World in 2014.
With every Disney film release come thoughts of Ben, but a film like The Incredibles 2 is particularly bittersweet because of Ben’s love of the original film. Mr. Incredible was one of his top three Disney buddies, along with Buzz Lightyear and Sully. Because of this, and since it was our tradition, it was especially important to me to see the film on opening day.
Of course, I had my little cry in the theater as the film began. There are times when I literally feel Ben beside me, which I know some people find strange, but at this film I didn’t feel his presence. I did, however, profoundly feel his absence. I was angry that he did not have the chance to see this movie. I don’t usually feel angry, though I do often feel frustrated that he was cheated of so much of life. There are certainly more profound life moments that he is missing and will miss that I should probably be more angry about, but sometimes the little moments make a tremendous impact.
This blog is a clear reflection of the way I look to each Disney film for enlightenment, hopefully a quote that will carry me forward or give me perspective. I like to be able to share these thoughts with other caregivers with the intention that they will validate, inspire or comfort. The Incredibles 2 did not disappoint. The film actually has a lot of messages about inclusion, diversity, fighting for justice, family and love. There were audible expressions of agreement when Dicker said,“Politicians don’t understand people who do good things. That makes them nervous.“
Interestingly, the quote that resonated with me was very appropriate for caregivers, and for an opening weekend that included Father’s Day. Edna Moda told Mr. Incredible,“Done properly, parenting is a heroic act. Done properly.” I was so fortunate to have had two devoted and loving parents. As a public school teacher, over the years I have seen many children who are not parented properly, in fact, they are barely parented at all. Good parenting is indeed a heroic, selfless act of love. The same came be said for good caregiving.
As a caregiver, I often questioned my abilities, especially when I was struggling with exhaustion, sadness and patience with Ben when he was stubborn and demanding. But, like any other caregiver, I put my emotions and feelings aside, or, at least on hold, and trudged on because the immediate needs of caregiving are not negotiable. Phone calls abruptly ended, activities were thrown to the side, chores ignored (well, I can’t say I minded that very much) as I attempted to create order amidst chaos, calm when he was panicked, and peace amidst the devastation of watching Ben deteriorate and suffer, physically and/or emotionally. Like all caregivers, I also ran interference among medical professionals and other related staff, as well as family and friends. I provided spirit boosts and levity and also administered difficult doses of reality, as tactfully as possible.
It certainly wasn’t my goal as a caregiver to be heroic and I don’t think that caregivers generally perceive themselves as heroes. We probably spend more time following Dory’s advice to “just keep swimming.”As a crybaby, I’ve never seen myself as heroic- at any point in my life- which is why, I think, I was puzzled when people told me that I was brave. Ben was brave, I was along for the ride, trying to be helpful and, a good deal of the time, not sure if I was much of a success. My insecurities made me feel much less than a superhero. However, I can attest that I definitely earned the Wonder Woman t-shirt Ben got me after I managed to grab him and keep him from falling off the bed!
In the film we are introduced to new super hero, Voyd, who asks Mrs. Incredible/Elastigirl, “How do you balance the superhero stuff with the life stuff?” Indeed, that’s a very important consideration for caregivers. For me, I constantly struggled with balancing the responsibilities of caregiving against a full-time job, daily life chores, relationships with friends and family, the emotional strain of losing the life Ben and I had, and knowing that ultimately, I was going to lose Ben. In retrospect, I think the balancing act IS the superhero stuff.
Young Dash tells his dad, Mr. Incredible, that he wants to fight bad guys because “It defines me.” I can say that caregiving defined me for several years and I found that it is a significant part of who I am and how I see myself. I have written about how I floundered when I was no longer a caregiver, until I found myself again through blogging, volunteering and trying to support other caregivers. Although I would rather not have discovered this through the illness and loss of my dad and Ben, I feel like I have identified caregiving as my super power. Unfortunately, I was not able to defeat cancer or ALS, but my dad and Ben always felt cared and advocated for and loved, and that is incredibly powerful. I did not see it while I was actively caregiving, but time and distance have provided valuable perspective.
Mr. Incredible at Walt Disney World’s parade, 2014.
Mr. Incredible summed up well the life of a caregiver when he said: “How do I do it? By rolling with the punches, baby!” I can picture Ben smiling and nodding, because, in actuality, both he and I rolled with the punches. I am still in awe of how well he rolled with the severe punches dealt to him by ALS. I guess we were both super heroes, albeit without the cute costumes.
I highly recommend The Incredibles 2. It’s quite fun and fantastic and offers unexpected words of wisdom for caregivers and everyone else. Post your thoughts! I look forward to reading them.
Ben as Mr. Incredible- Part of a birthday collage that I made for Ben. When it came to battling ALS, Ben was indeed a super hero!
