On the heels of the third anniversary of the loss of Ben, I got medical test results that indicated that further testing is needed. My doctor is not concerned and believes I’m fine, but says it should be addressed. I am a terrible patient, which any of my doctors will attest. Just going for a check-up comes with a lot of anxiety. Ben was much braver than I am. My cat, Disney, is much braver than I am. Now, I have to go to a different doctor, which causes a lot more stress. And, this doctor is away for the week. Normally, I email or call a couple of friends to vent and get suggestions. This time, I chose not to. I don’t want to be the bearer of more sad news in my life, especially when I’ve been doing better. I guess this post will put it out there, but it is not something I want to discuss.
When my dad and Ben were ill, I was the dutiful and loving caregiver who accompanied them to every medical appointment. They were never alone. Likewise, when Ben was well, if I was nervous about an appointment, he accompanied me without my asking. Ben was frustrated that he could not join me when I called him from the emergency room that I had broken my shoulder, but he was still at home to comfort me. Things have changed. Two years ago, I had to have a pretty standard out-patient procedure. I had arranged, per protocol, to have a friend meet me afterwards, but I went to the hospital by myself. I didn’t think it would be so much like going into surgery, so I was overwhelmed by the situation. My doctor is pretty good at anticipating and handling what a nervous wreck I am, but I was not dealing well with all of the strangers. I don’t think I ever felt so alone. It was then that I realized that I might carry Ben in my heart, but at times like this, the truth is that I am by myself. I am probably most comfortable as the caregiver rather than the caree, but this circumstance made me see that there are times I want to be cared for. I have wonderful friends who would be there if I ask them, but I no longer have that person who would be there without my asking. Thankfully, everything was fine. But, if there had been complications, or if there are any complications this time around, I am pretty much on my own to tackle them. Hopefully, my doctor is correct and I am fine. Right now, I’m having a little pity party and feeling like Simba- “You said you’d always be there for me, but you’re not.” Ben may be watching over me, but at times like this, it’s not enough.
Life happens, healing happens, and setbacks happen. Disney always helps me deal with my feelings. The Lion King is just one of the films that’s helped me deal with loss and grief (see that post by clicking here). Writing is another way that I cope with the setbacks. It helps me to channel my sadness and frustration. Writing sometimes takes the issue and breaks it down. It won’t change my reality, but it does relieve some of my near hysteria. It was a good way to start this period of waiting to see this new doctor. I hope that anyone who reads this has strategies to help cope with sadness and grief. Feel free to share your own strategies in the comments, as they may inspire others.
I like to put a positive spin on things, so maybe I have to say to myself that this will be one more way that I learn that I am braver than I believe and stronger than I seem. I will remind myself that I am fortunate to be able to function independently and at least fairly wisely. For now, I just wish they were here.
2011- This is one of my very favorite pictures of Ben because he was so full of happiness and laughter. Here, he was laughing at me when I met Tinker Bell.
Today marks three years since Ben left this world. It’s a difficult day. Last night was a difficult night. I relived that time three years ago, staying in the hospital and watching Ben sleep, knowing that it was his last night, wondering what he was thinking as he slept. I remember my fear and anxiety and sadness. I remember those hectic hours before those who loved and treated him gathered as he separated from the vent. It was scary and somber, and yet, seeing Ben surrounded by love and music- and how wonderful and yet bittersweet it was to say our vows- was quite beautiful. Ben used to get frustrated with me about my lack of confidence, so I think he would be happy that I do feel pride that I turned to Dr. Muller, his much beloved doctor and my frequent source of strength, who helped me to pull together a loving farewell.
Although it has been three years, this remains a day for which I brace myself. I woke up with a headache that I am still fighting. I thought I might go to Central Park to see our turtles because I know they are messages from Ben. I decided that I just want to stay home with my thoughts and memories. I simply don’t want to be around anyone. I’m giving myself this day.
My Disney friends have taught me well that Ben will always be with me in my heart. I feel especially connected to Ben when I watch his favorite films- The Incredibles, Toy Story 1,2 and 3, and Monsters, Inc. Today, I decided to watch the Tinker Bell films. I have not been able to watch them without Ben but today, I felt compelled to tackle this and revisit my tiny friends and the huge sentiments they invoke. They have indeed been hard to watch today, too, though they are so special to me. Those are films we often watched late at night because the soundtracks were like lullabies to me. As joyful and sweet as they are, they also bring back the memories of rough evenings when just transferring Ben into bed was physically and emotionally stressful. We rarely had a full night’s sleep because as ALS affected Ben’s breathing, he had a lot of anxiety about sleeping; he could not turn by himself; and then there were times that he needed to use the commode in the middle of the night. I do have to say that it always made me smile to open my eyes and see Ben totally enthralled by the fairies. Since the Blu-Ray films looped, when he had trouble sleeping, he would watch them over and over while I slept. I remember once saying that I didn’t quite remember the plot of Tinker Bell and the Lost Treasure because I always fell asleep before the ending and Ben shook his head and said, “she was a very bad girl in that one.” I looked at him with a smirk on my face and we both started to laugh. He loved those little fairies. I loved that about him. I loved to come home and see him watching, Pixie Hollow Games. I think Ben was more excited than I was when Tinker Bell and the Pirate Fairy was released, because Ben loved pirates (click here for more about that!)
While all of the Tinker Bell movies held a special place in our hearts, it was Tinker Bell and the Legend of the Neverbeast that was unexpectedly emotional. In this film, the fairies meet and help Gruff, the Neverbeast, a frightening looking creature who comes to life every thousand years. Though he is feared by the fairies because he is fabled to want to destroy Pixie Hollow, he is actually more friend than foe. I remember how Ben and I cried at a couple of points during that particular film: when Gruff saves Fawn’s life, which, of course, no one could do for Ben or anyone else with ALS; and then, as Fawn told Gruff, “Hey, big guy. I-I won’t see you again, but I know you’ll always be there when we need you. I’m really gonna miss you. I love you, Gruff.” Though Ben did not like to talk a lot about dying, the film brought his emotions to the surface. Tinker Bell and her friends sprinkled the pixie dust that gave him insight and permission to feel, and, also gave me insight into things he was not outwardly expressing. It was painful to watch those scenes again today, and there have been many tears, but it is an important reminder of our good memories and how Ben is always here for me. Never underestimate the power of Disney magic to convey very big messages in even the tiniest fairies.
Tinker Bell and the Legend of the Neverbeast, Disneytoon Studios 2015
Yes, it’s been three years. I have seen grief shift from emotionally paralyzing to something with which I co-exist. I continue to assess my feelings and compare them through the passage of time. I have created a new normal for myself with a special place for Ben’s presence. I struggle with his absence at times, as I did when I went to the Georgia Aquarium this summer (click here for that post). I do look for and see messages and signs from Ben. I keep him in my thoughts and wonder what he would think and how he would see things. I have stepped forward and, just like Gruff was for the fairies, Ben is here when I need him, just in a different way. It is ok that today is a bad day. Any way that I would have chosen to spend today would be okay because, no matter what, Ben is in my heart. I know that overall, I am doing better at delving into and living my life. Just not today.
Once again, I am sharing the video that I made on the first anniversary of this day. It continues to make me smile to see and share so many lovely memories and to hear Ben’s favorite Beatles song, “In My Life.” I love you and miss you, my silly Ben.
Crystal Pavilion at Walt Disney World, May 2010. We took this trip right after Ben received his ALS diagnosis.
It will come as no surprise to anyone who even vaguely knows me that I was very eagerly awaiting Disney’s Christopher Robin. I love my buddies from the 100 Acre Woods. There are so many wonderful memories of the joy and laughter they brought to Ben and me when we visited Walt Disney World. One of my very favorite memories was seeing Winnie the Pooh at the lunch buffet at the Crystal Pavilion. This was after Ben’s ALS had progressed a bit, and Ben was unable to walk around the buffet or carry his plate, so I got him settled at our table and went to get our lunch. When I returned to the table, Ben told me that I had just missed Pooh, and he said that he told Pooh that I would be so disappointed to have missed him. Ben’s speech was impaired and he hoped that Pooh understood what he said. Sure enough, as I went to take my seat, Pooh came running towards me with outstretched arms and he gave me a big hug. He tapped his head, showing me that he remembered to come back to see me. It was so sweet and Ben was beaming. You see, with ALS, I was always taking care of Ben, and in this situation, he was able to do something very special for me. Pooh would not have known that, and Pooh may say he is a bear of very little brain, but clearly, Pooh has a big heart and a lot of compassion, and in my book that is very smart indeed!
The opening of Christopher Robin seemed so perfectly timed, since I began my blog at this time two years ago, starting with the famous Christopher Robin quote, “You are braver than you believe, stronger than you seem and smarter than you think.” This quote continues to resonate. Christopher Robin was a very wise little boy and Pooh was not such a silly old bear.
The film was even more wonderful than I had hoped. It is delightful but also thought-provoking and touching. We learn that Christopher Robin may have thought that he grew up and away from the 100 Acre Woods and his imagination, but it was only in tapping the child within him, and his love of Pooh, Tigger, Eeyore and Piglet, that brought Christopher Robin back to what was important in his life. It’s an important lesson that tugged at my heartstrings.
At one point in the film, when Christopher Robin is trying to figure out which way to go, Pooh says “I always get to where I’m going by walking away from where I’ve been.” It was a sweet and silly comment from a sweet and silly bear, but it made me think about where I was three years ago and where I am now. At this time three years ago, Ben was in the hospital deciding if he wanted to go through with getting a feeding tube and tracheostomy. Ultimately, after having those procedures, he made what I consider to be a brave choice to separate from the vent and, ultimately, to succumb to the disease.
Halloween 2012
After experiencing the profound loss, I was immersed in grief, going through motions in my life but with my feet firmly planted in grief. Kind and caring friends and family wanted me to leave that place, but grief was where I belonged. I could have tried to avoid the pain of grief by walking away from the memories of that overwhelmingly difficult time and landing somewhere- anywhere- else. But, as the movie poster says, “Sooner or later, your past catches up with you.” I don’t believe that I would have been able to ignore the pangs of sadness. Life changed in so many ways and the loneliness and devastation of how much was taken away from Ben and from us was always in my face. But, if I walked away from that part of my life, wasn’t I walking away from my entire relationship with Ben?
Eventually, I reached a point where I wanted to venture forward, but only by dipping my toes in the land of the living. I was floundering, without a sense of where I was going. All I knew was that I wanted Ben to come with me. So, I stepped away from where I was, but Ben was constantly in my thoughts and always vivid in my heart. Sometimes that has been enough and I have kept pace, and sometimes the deeply present feeling of his absence sends me stumbling backwards.
A conversation between Christopher Robin and Pooh sheds light on why I am so bothered by the idea of walking away. In the film, Pooh asks Christopher Robin, “What should happen if you forget about me?” Christopher Robin replies, “Silly old bear. I wouldn’t ever forget about you, Pooh, I promise. Not even when I’m a hundred.” Maybe, for me, walking away implies leaving behind and then, possibly forgetting, and those are things that will never happen for me.
I think about how Ben stays so present in my heart, as do my parents and grandma. Sometimes I feel that people would prefer that I not talk about Ben so much, but, at least for now, it’s what feels right. Maybe the talking about him with such frequency will change, but he and my other loved ones will always be a part of me. It has taken these three years to become more comfortable with the knowledge that continuing to live does not mean that I am walking away and leaving them behind, because they are embedded in my heart and soul, never to be forgotten.
Halloween 2011. Piglet was bigger than we’d imagined!
At this point in time, I may have walked away from the deep grief, and I haven’t exactly worked out where I’m headed, but I carry all of my memories- from the tragic to the beautiful- with me. Do I still give in to tears? Absolutely. Sometimes, when I am having a setback, I return to the grief-filled place. I think it’s okay. Feeling the sadness at times allows me to reflect and to feel that love again. But, I also comfort myself in wondrous, loving and meaningful memories, as well as lots of silly and lighthearted ones. I embrace that our experience with ALS- including caregiving and loss- was a part of our entire sixteen years together and it has contributed to who I am. Writing helps me to check in with myself and reflect on how my emotions have shifted over time.
I highly recommend Disney’s Christopher Robin. It will make you laugh, cry and reflect. And, I’m happy to say that Eeyore steals some scenes with his gloomy but hilarious sarcasm- he’s my favorite, but please don’t tell the others! Also, please be sure to stay for the credits, where you will see a very cute scene featuring the legendary Richard Sherman, who wrote and performed some of the music in the film. It’s fantastic and heartwarming to see him still creating and being a part of the Disney magic.
Halloween 2011. Ben used the scooter but he liked to stand for pictures with our buddies at Walt Disney World.
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!
