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.
Disney’s Christopher Robin made a big impression on me, and I can’t stop thinking about it. I think I’ll have to see it again! (and probably again after that, and many times once the DVD becomes available!)
I’ve been reminiscing about Pooh and Piglet played a big part in how Ben won my heart. When Ben and I first started dating, we often walked to the flagship Disney Store on Fifth Avenue in Manhattan. It is no longer at that location. We wandered the 3 floors and I often left with little gifts- the courting phase of a relationship is fun, indeed!
Having spent increasing amounts of time with me, Ben was becoming fully immersed in the Disney mindset, and loving it, sometimes to his own amazement. One day, as we strolled through the store, Ben called me over to look at a figurine, exclaiming, “Abby, look! It’s Piglet and his best friend, Pooh!” I stared at him, speechless, and then started to laugh. He shook his head, laughed, and said, “I was macho before I met you!” Truth be told, he was not so macho. He was a big teddy bear, and his great hugs could calm me down and completely surround me with love. He was a big kid at heart who indulged my inner child, and that was us. He bought me that figurine as a surprise, and it will always be so special to me.
Piglet and his Best Friend Pooh! A very special figurine with very sweet memories.
When I saw Piglet and Pooh together in the film, I couldn’t help but picture Ben smiling. They have a such a beautiful, sweet friendship. Here’s one little conversation between them that touched my heart.
“I don’t feel very much like Pooh today,” said Pooh.
“There there,” said Piglet. “I’ll bring you tea and honey until you do.”
That’s caregiving. It’s that simple and that complicated. Ben didn’t feel like himself as ALS took away his abilities. There were times that he was understandably frustrated and sad. All I could do was be there, trying to bring him comfort.
Sometimes it’s a matter of being present, sometimes it’s being a good listener, sometimes it’s ensuring that routines- including medications- are followed. Mostly, it’s about caring to figure out exactly what will soothe the caree at the moment. For Pooh, honey was always a good solution. It’s not always that easy. But communicating the desire to be there, to help and support, can only strengthen a bond. Although we could lose patience with each other, and sometimes we both needed our moments to feel down, Ben knew that I would always at least try to find the thing that would be his tea and honey. And, I knew that he would find a way to show me he loved me.
Halloween 2011. Piglet was bigger than we’d imagined!
In another conversation:
“What day is it?” asked Pooh
“It’s today,” squeaked Piglet.
“My favorite day,” said Pooh.
It’s hard to imagine that any day with ALS can be a favorite day. There were definitely the big time highlights, like when Ben woke up on January 1, 2015, and he said that he had such a fun New Year’s Eve. I had ordered matching Mickey Mouse and Friends pajamas for us and even for my cat, Disney. Ben always loved the fireworks at Walt Disney World, and I found a toy that supposedly simulated fireworks, with sound effects and LED light “fireworks” that were activated by a remote control. We played the soundtrack to the “Wishes” Magic Kingdom fireworks show and Ben chose the sequence for our fireworks show while we had our photos scroll on his computer. It was pretty hilarious to pretend we were at the Magic Kingdom as we watched these pretty unconvincing fireworks splash on the wall. It felt almost magical to laugh and enjoy the evening. That silly celebration was a most favorite day and is now part of my treasure trove of beautiful memories of moments sprinkled with pixie dust.
Crystal Pavilion at Walt Disney World, May 2010. We took this trip right after Ben received his ALS diagnosis.
Any days spent at Walt Disney World were favorite days when Ben felt free as he rode around in his scooter or electric wheelchair. The Disney magic allowed him to enjoy most of the attractions and to temporarily abandon his worries.
Once he was homebound, Ben’s days did not vary much. But, every day that he was okay and things went smoothly, when we handled or averted a crisis, solved a problem, and enjoyed each other’s company, was a favorite day. We recognized, acknowledged and treasured those.
Winnie the Pooh commented, “There’s always time for a smackeral of wonder.”I think that’s true. And, it’s so important. Ben never lost his curiosity, sense of humor and ability to be inspired, particularly by music. When we were able to go to Walt Disney World, his inner child shone, and he marveled at everything he saw and all the music he heard. When he was home, he watched movies and documentaries and listened to music, always questioning, always learning, always with a sense of wonder and delight. I think that helped him to navigate ALS. Always finding time for a “smackeral of wonder” is good advice for all of us.
I believe that Ben would be especially happy that these lessons came from Piglet and his best friend, Pooh.
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.
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.
I guess aquatic life has been on my mind since my little jaunt to the Georgia Aquarium and found Nemo and Dory and had so much fun with the sea otters, dolphin and penguins. Nemo, Dory and their friends helped me put into perspective a lot about caregiving and life. It’s not all about “just keep swimming!” but you can read about how that quote inspired me by clicking here.
Some of the best help and support you receive will come from unexpected sources.
Dory felt alone because she thought she would never find her mom and dad and have a family. She finally realized that Nemo and Marlin were also her family. My friends are my family, too and they provided help and support for which I will always be grateful. So did some of the professionals who took care of Ben, and I will forever love and be grateful to them as well. Becky and Gerald may have seemed like they were not up to the task of helping Dory and her friends, but they also came through in big ways. Don’t automatically judge or dismiss people, especially if they genuinely want to help, because they may be the very people who will listen, assist and offer really good ideas and information. Teamwork happens in many ways. All kinds of people stepped in surprised us in wonderful ways throughout Ben’s illness, and they continue to do so. They have compensated for the people who disappointed us, because, of course, there’s that, too. Knowing that Ben was in the hearts of many always touched me, and it still does. Never underestimate the power of compassion and always be open to delightful surprises.
2. Be careful of the undertow.
Caregiving is overwhelming for so many reasons. Aside from the demands of the job, there is an emotional toll of helping someone you love deal with any disability or illness and watching them struggle. The “undertow” can take a caregiver and/or a caree to a place of extreme sadness, depression, loneliness and helplessness. It’s important to stay connected to the outside world, through your own network of friends and relatives, outside agencies, and social media support groups. Make lists of things and/or people that provide comfort, cheer, or assistance when the undertow starts pulling you down.
3. “I’m OK with crazy”- Hank
Illnesses are unpredictable and caregiving needs are unpredictable. Our moods are also unpredictable, particularly when we are stressed, exhausted and our Tangledemotions are turning us Inside Out (what can I say? Disney references work for me!) You have to be ok with crazy when many things are happening at the same time that you have many conflicting emotions. And, you have to be ok with crazy when attempting to handle crises. I remember thinking that crazy was my new normal. Perspective helps! So does humor.
4. Not everything is easy to do, but there is always another way.
Creativity, resourcefulness and a good sense of humor can help to determine new approaches and perspectives on how to deal with issues. Don’t be afraid to ask for help.
5. “News flash! Nobody’s fine!” – Hank
In the most planned and organized day, there will be crises. They can be physical issues but they can also be emotional fallout. Caregivers and carees are not always at their best, though we would like to be. It seems to me that our default answer to “how is everything? “ is “fine” and I’ve found that most people kind of want that answer because they don’t know how to handle anything else. I have heard people with ALS and their caregivers says that it irritates them to be asked that question because people really don’t want an honest answer and they don’t want details. And, they don’t want to feel obligated to do anything, even if there is no expectation of that. It’s ok to admit that things aren’t fine. That admission should not invite any judgment. And, it doesn’t mean that things won’t be fine again, even in a matter of moments. Remember, Hank taught us that we’re ok with crazy!
6. An octopus may have 3 hearts, but it doesn’t mean it’s nice.
Yes, it’s a fun fact, but it also lends perspective to our expectations of people around us. Ben and I were very fortunate to have lovely people around us, but we also learned that not everybody has a big heart, and having three probably would not have helped them either. Also, professionals are there to help, but, like all humans, there are more and less helpful and invested people. We were surprised in good and not so good ways.
7. Let someone know you love, care about and value them.
Marlin often gotten frustrated with Dory, but he realized that in her innocence, she was fearless and she got him to do “crazy things” like jump jellyfish and outsmart sharks to help find Nemo. His approach to problem solving became asking himself what Dory would do.
In the film, Marlin apologizes to Dory for not having told her how much she did for him. That’s not a regret anyone wants to have. Take any opportunity to share kind and loving moments and memories. The frustrations and resentments will ebb and flow, but the appreciation and love we have for each other should always flow.
8. “What is so great about plans?”- Dory
We certainly need to have plans in place, and even back-up plans, but when you’re dealing with illnesses and caregivers, you’re also dealing with human beings and unpredictable factors. For example, I prepared to go to work every day, but there were days that I had to stay home at the last minute for a variety of reasons. I remember that on some of those days, my feeling Ben’s very loving appreciation and his feeling my unwavering devotion, made for beautiful days. You know you have to be prepared for anything, but expect the unexpected in good ways, too.
9. You can do whatever you put your mind to.
Dory may have suffered from “short-term remembery loss,” but she dove in and figured out what she needed to do to find her parents. She enlisted her friends to help her and remained determined. She didn’t give much thought to consequences, which did create some problems for her along the way. But, she forged ahead. Caregiving can be very overwhelming at times, in terms of the actual tasks and in thinking about the future. But, I always come back to Christopher Robin’s wise advice to Winnie-the-Pooh: you are braver than you believe, stronger than you seem, and smarter than you think.
10. Never underestimate the power of a cuddle party!
I am kind of obsessed with river and sea otters, so those litter critters stole my heart in the film. But, they are a strong reminder that a little bit of whimsy, sweetness, and cuteness can lighten any moment. For Ben and me, that often came in the form of generally anything Disney. My huge collection of Disney toys to cuddle didn’t hurt either! I have added a couple of cute little otters to my collection. They all comfort me now in grief, too.
11. Sigourney Weaver rocks! You need someone like her on your side!
Whether standing up to aliens or lending her voice to stand up for our marine life, she is a star! Sometimes I felt like that person for Ben, and at other times I felt completely inept. But I’m going to always keep reaching to be a rock star (well, maybe more of a Broadway show tunes or Disney star!)
All photos: Finding Dory, Pixar Animation Studios and Walt Disney Pictures, 2016