Just a little post in honor of National Talk Like a Pirate Day. Ben always got a kick out of this day because he loved to talk like a pirate. Pirates of the Caribbean was one of his favorite attractions at Walt Disney World, and one that quickly became too difficult for him to navigate because of the big step onto and off of the boat. The special ringtone I had for Ben’s phone calls was “Yo Ho, Yo Ho, a Pirate’s Life for Me,” the song from that attraction. In fact, listened to various versions of that tune today but I will never use that ringtone again because it is forever Ben’s.
On our last visit in July, 2014, I surprised him with the Pirates and Pals fireworks cruise at the Magic Kingdom, where he got to meet Captain Hook and Mr. Smee, and even Peter Pan. It was a wonderful time and a beautiful memory.
When I saw that today was National Talk Like a Pirate Day, I smiled and thought about Ben laughing and making his pirate sounds. It’s good to be able to smile at the good memories. There will always be a sting at what we won’t share ever again, but it’s a gift to be able to picture his smile and laughter and have such a joyful memory. Healing happens. Yo ho, my Ben!
At the Pirates and Pals Fireworks Cruise, Walt Disney World, July 2014
I’ve written a lot about wishes. Maybe it’s my belief that wishes can come true that allows me to see, or to look for, the bits of wishes that come true, and remind me of what’s really important.
When my cat, Disney, became ill a few weeks ago (click here to read about that), I sat in the vet’s Emergency Room waiting area wishing for her to be okay. I’m happy to report this update that my wish came true. Some would argue that I’m seeing through Disney-colored glasses, because she has several medical conditions and requires a lot of medication, but her conditions are manageable. And, her kidneys actually improved, which was a great, surprising relief to her vet and to me! She is back to bossy, spoiled and adorable self, cuddly as ever, but most importantly, comfortable and feeling well. I understand that this will not last forever, but what is really important is to treasure this time.
When Walt Disney World announced that the “Wishes” fireworks show was ending, I was a little heartbroken. I find it hard to lose things that were symbolic to our relationship. Ben and I watched that fireworks show during our last visit to Walt Disney World in July 2014 from the Pirates and Pals cruise on the lagoon. We both cried as we listened to the lyrics. We’d seen the fireworks show before, but now we really wanted to believe that our wishes, our dreams, would come true.
Ben loving the Pirates & Pals Fireworks Cruise. That joy on his face is my favorite memory of our last trip.
Excerpts from the “Wishes” Fireworks Show
Hear the music from “Wishes”
Star light, star bright,
First star I see tonight.
I wish I may, I wish I might,
Have the wish, I wish tonight.
Oh, a world of wishes,
A world where dreams come true.
So make a wish, see it through.
Dare to do what dreamers do.
Dream a dream.
Set it free.
Trust your heart.
We’re all just children,
Reaching for our dreams.
They’re shining high above us,
And even though it seems so far (so far)
We put our faith and hope on a shooting star.
You know, any wish is possible. All it takes is a little courage to set it free! A wish is a powerful thing—especially when it comes from the heart.
Remember, we must always believe in our wishes, for they are the magic in the world. Now, let’s all put our hearts together and make a wish come true.
The wishing Well at Cinderella’s Castle. We always wished for a cure for ALS. I still hope that wish comes true.
Some people might have rolled their eyes at my saying that Ben and I tossed coins into Cinderella’s Wishing Well after his diagnosis of ALS. We did wish for a cure. That did not happen during his six-year battle with the disease. As I have written before, maybe it is a matter of perspective, but despite that wish not coming true, maybe we did have some pixie dust, because for four of those years, Ben did okay managing the ALS. And, he always had a positive spirit and tremendous determination. That spirit and the love that got us through the awful times are at the core of what is really important.
Walt Disney said, I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter. I have wished to find ways to cope with profound grief and the physical and emotional toll of caregiving. While I am realistic enough to know that this is a work in progress, my wishing and firm belief in the power of pixie dust allows me to carry the good memories, look for the good moments and recognize how Ben and my dad are always with me. Maybe it’s Walt’s philosophy and my whimsical love of wishing that encourages me to take the time to think about what is really important amidst the conflicting emotions and myriad memories, and to embrace the Bibbidi-Bobbidi-Boo that gives me peace. I wish that for all caregivers and patients with ALS and all diseases.
The new school year started last week. It had me thinking about the past several beginnings of the school years. Honestly, they were not great. I was going from a difficult caregiving situation to a challenging and often unpleasant, bordering on abusive, public middle school environment. While teachers were sharing fun summer stories, I sat quietly, smiled and shrugged if anyone asked me how my summer was. I was the caregiver with the dad and husband who were both dying. I did not have fun summers. I did not have fun weekends. After I lost both of them, I was the person in grief. In 2015, was not prepared to return to school just two weeks after Ben passed away, and I went through that school year in a bit of a fog, largely just going through motions. When people looked at me, they saw my experiences in caregiving and losing the people I loved. Well, that and anything Disney-related.
Ben loved Mulan and he really loved the song in this clip, Reflection. I can relate to it, although Mulan was struggling with her identity within her family.
Somehow I cannot hide Who I am, though I’ve tried. When will my reflection show who I am, inside?
I’ve written a lot about feeling like I am floundering because I am no longer a caregiver, which was my role for several years. Caregiving consumed my life. I did what I was expected to do but also what I felt in my heart was the right thing to do. Despite the emotional and physical stress, it was the most important, valuable and loving work I have ever done. The attentive and devoted caregiver was who I was inside and out. Caregiving also revealed to me a strength that I never would have believed I possess, and that my often emotional demeanor would never have conveyed. Once that role was removed, I lost myself and my reflection was blurred.
Now, when I look at myself, I don’t really know who I see. I do have more moments when I feel like the more eccentric and whimsical person of my pre-caregiving days. But, I cannot- at least for now- compartmentalize my caregiving experiences and losses. The truth is that I have embraced my caregiving qualities as positive parts of myself. It is an accomplishment to feel proud of myself, and caregiving did that for me, though it took a long time for me to realize it. My struggle is finding a balance of being true to Ben and my dad, and true to myself, while living in the present. I wonder if and when I am talking about and reliving too much about Ben. I want the Abby I am now to reflect all of those experiences without remaining immersed in them.
Over the summer, I was fortunate to find a new position in a wonderful school. I am back in a high school, which is my preference. As I was gearing up for my first day in that building, I realized that people would not know my story. I was no longer going to be known as Abby, Ben’s caregiver, or Abby who was so devoted to her dad and her husband. I will just be Abby. I guess that offers many possibilities for self-exploration and reinvention. I know that inside myself, I will hold all of my love and experiences. The problem I have is how to reflect on the outside what I feel on the inside and not remain in the past.
When asked to introduce myself at professional meetings or in my personal life, I feel like I’m not really sharing who I am because I do not talk about caregiving, my dad, or Ben and his ALS. I see myself more as a caregiver than anything else. Being my dad’s caregiver and his whole world, and being the person at Ben’s side throughout his battle with ALS are a vital part of how I see myself, even though those actual days are done. Presenting myself apart from Ben, as a person on my own, seems incomplete, and almost disrespectful. I have to keep reminding myself that Ben is still a part of everything that I do and we will always be connected. However, I have to find my own way now.
I do often see signs that Ben is with me. I received one on the second day of school with the students. At this school, instead of bells to signify the beginning and end of class, they play music. It’s quite fun. As students trickled into class, The Beatles’ Twist and Shout came over the loudspeaker. Ben LOVED The Beatles, and it was when Twist and Shout played at a gala for the organization were we met and worked, that, for the first time, Ben pulled me onto the dance floor. From that point on, we danced to it whenever we heard it, even when I had to hold him up as ALS claimed his legs. I found myself smiling instead of crying, as I turned to the kids, whom I don’t really even know yet, and told them that this was the first song I danced to with my husband. Of course, high school girls love romance, so there was lots of gushing. I knew in that moment that it was a sign that Ben was with me as I embarked on new experiences in this new school.
All of our experiences help us grow and evolve. I will always see the people I’ve cared for, loved and lost in my reflection and I am proud and comforted that this will always keep their spirits alive and close. I hope that what others see in me honors them and our love and does justice to all of us.
Music by Matthew Wilder
Lyrics by David Zippel
Performed by Lea Salonga
I have written before that although I lost myself when I was caregiving, I also found myself in caregiving. I might have fought it when things were difficult or devastating, but I also learned to embrace the beauty of caregiving and to recognize the strength that I do possess when I am in the role of caregiver. I have lost my dad and Ben, but my role continues and it is a perfectly imperfect fit. That became especially clear to me over the past few days, while caring for my ailing cat, Disney.
Disney is almost sweet 16, and sweet she is. She is the most gentle, loving girl, and a little bit of a spoiled brat, but as Ben would say, I created that monster. She’s got a lot of medical issues- diabetes, thyroid, arthritis, heart murmur. With each diagnosis or complication, I’ve channeled my inner Dory and I “just keep swimming.”
Disney was originally diagnosed with a thyroid problem and diabetes just two weeks after Ben passed away, and the news sent me reeling but I was not going to let the undertow drown me. I was told that I would manage her condition by administering injections of insulin twice a day. I am a squeamish person and this had me terribly nervous. But, I reminded myself of all the very ugly and messy things I had to do for my dad and for Ben. “You are braver than you believe, stronger than you seem, and smarter than you think.” Yes, and thank you, Christopher Robin, I am. Disney is a wonderful patient, and she makes things pretty easy. She has begun to eat the pill pocket containing her thyroid medication, leaving the pill visibly displayed for me, showing that I have not outsmarted her. But, as her caregiver, I have to ensure that she gets what she needs.
A couple of days ago I took Disney to the veterinarian for a follow-up visit, pointing out that she was not eating as well as usual. The vet suspected some kidney damage and an infection. Her blood sugar was also very low. She stayed in the hospital overnight for glucose infusions and monitoring. Then, it was determined that she should have an ultrasound. I was able to visit her during her two night stay, and when I was with her she curled up against me and closed her eyes, because all is well in Disney’s world when her mommy is with her. I love the quiet, sweet moments when I know that I am comforting her.
Visiting hours for Disney.
We were sent home with new medications, including one to be given with a syringe, and fluids to be administered under her skin with what looks like an IV drip. I think her vet thought I would pass out or break down as I wrote down all the notes and when I saw the set-up. As Dory says, “You can do whatever you put your mind to.”
When we got home and before we went to sleep she was not acting right. She had two accidents on the bed, which I attributed to the infection. But, she was extremely lethargic and wobbly. Then, she had what turned out to be a seizure. I held her in my arms and she calmed down. After another similar episode, I decided that I had to call the Emergency Room at around 4:30AM. The doctor asked several questions and heard Disney’s distress meow, and said that I should get her to the ER. I sat and waited for a report, as I had done so many times with my dad and Ben. I felt that same exhaustion and worry. And, I realized that although I was distraught, I only wanted to care for and console this little girl whom I love so much. I am most comfortable in the role of caregiver. It is who I am.
It turned out that Disney’s blood sugar was super low, and had I not taken her to the ER, she might even have died. I am still having trouble wrapping my head around that. She was kept in the hospital for several hours for monitoring while they intravenously administered dextrose. She perked up and was doing much better, so I was allowed to bring her home. We are adjusting her insulin dosages but I must carefully watch her behavior and reactions. As I cancelled my weekend plans with friends to be with her, I had flashbacks of the many plans I had to cancel or postpone due to issues with my dad and Ben. Of course, there were times I was very disappointed about not going out, but caregiving was my priority and, at the time, because of so many conflicting emotions and so much chaos, I don’t think I even realized that I took pride in being the person they trusted and on whom they depended. It is only in retrospect that I began to realize that it was through caregiving that I really knew who I was and what I was meant to do. Now, I know that Disney will feel better if I am home with her and I love that I make her feel better and that I will be able to give the vet necessary information to inform the treatment plan as we move forward.
I was afraid to go to sleep last night for fear that something would happen. Eventually, we both fell asleep. I awoke to her on the bed staring at me. She did not want to eat much of her breakfast, which has me concerned, but I will be in touch with her veterinarian. She definitely was not thrilled with all of the medications, but was very cooperative. She has been very cuddly and purring a lot, which is a good sign. As I’m writing this I am smiling, because although this is stressful, it is the normal with which I am most comfortable. This is who I am. And, for the first time, I’m feeling proud of it. Like Hank, I’m OK with crazy!
I admit that I am terrified of losing Disney. Intellectually, I know that she has health concerns, and that she is a senior cat. Emotionally, she is just such a lovely cat and she has been there for me as I cared for and lost my dad and then Ben. At my loneliest, most frightened and most inconsolable, she was there with cuddles. She is the cuddliest cat I’ve ever met. People who don’t love animals don’t understand. People like me, who love our pets, don’t understand people who don’t understand the love we feel for our furbabies. But, I was raised in a family that unquestionably valued our dogs as family members. My dad loved my cats, too, though he did unabashedly compare them to our Schnauzers! Some people might take offense at my comparing caregiving for Disney to that of my dad and Ben. I can tell you that my dad would have had it no other way and he would be flattered. Ben would completely understand and he, too, would be flattered. The bond that is felt when caring for someone you love, human or otherwise, is profound and priceless, despite the difficulties.
I summoned the courage to ask the vet if she felt that I should brace myself for losing Disney soon. Thankfully, she said that we do not yet have to make that decision. But, she said that with all of Disney’s health issues, it is a challenge to manage all of her conditions. It is a lot of medication, additional vet visits and always the risk of ER visits. This is a big financial and emotional expense and challenge. In my mind, if she has a good quality of life and just needs management of her conditions, I am up for the task. Disney has always risen to the occasion of comforting me and giving me joy and laughter. She did that for Ben, too. She was definitely affected by the way he changed as a result of ALS and in her own way, she was protective of him. When he was in the hospice in his last days, I was allowed to bring her to visit him. At first, she didn’t like being on the bed with him because her arthritis renders her uncomfortable at times. She sat on the chair next to him and intently watched him. At one point he asked me to lift her and put his hand on her. When I put her on my lap to bring her closer, she pulled herself onto the bed and curled up on him. I put his hands on her and she turned on her side. They both closed their eyes. I believe that in that moment they said their good-byes. It was beautiful. For me, Disney represents a very close remaining connection to Ben. I’m sharing a photo of them in the hospice. I generally don’t share these personal photos, because they are difficult memories and private, but I do think that it is important for people to see the realities of disease.
Disney watched Ben throughout their visit in the hospice, even when he slept, as pictured here.
I will never be selfish and prioritize my desire to keep Disney with me over her quality of life. But, once again, I am lovingly, proudly and purposefully, though sadly, in the position of caregiver, and I will do whatever I can to give her a good quality of life and a lot of love, as she did for my dad, Ben and me.
Disney thanks everyone for their well wishes while she recuperates.
Today marks two years since Ben left this world. I don’t know if it feels like a longer or shorter time. I guess both, depending on what moment I’m in. I’ve spent the past few days thinking about what to write and how I’m feeling. These are hard days filled with tears that flow easily. In my mind, it’s perfectly okay to have a few sad days. In a way, the tears are reminders that I was fortunate enough to have had a beautiful love that I miss so profoundly. But, it’s sad nonetheless.
A year ago, I posted this video, and I am posting it again because I love these memories of Ben and I love people to remember him alive and vibrant. He loved those photos, too. And, “In My Life” was his favorite Beatles song. It was played for him by a lovely guitarist named Todd on the day he left.
I know for sure that Ben has not left me. As Mrs. Frankenstein says, he has moved into a special place in my heart. I often feel him with me. I still talk to him. That does not make sense to everyone and that’s okay. It seems to me that the best thing that I can do is try to honor him in my actions. Sometimes I buy things, listen to music or watch movies because they let me get lost in thoughts of him, and in those moments I see him smiling. Sometimes this gives me comfort and at other times it is a painful reminder that he is not here. Sometimes I do need a good cry.
In facing this second anniversary, I took time to reflect on the past year and where I am compared to last year. Firsts are hard, and in that first year without him, every first occasion hurt in a very raw way. I labored through that first year, often just going through motions. Although I slowly ventured out and saw friends and participated in activities, I often returned home in tears because it took so much energy to act cheerful, and if I was at all enjoying myself, I felt guilty and overwhelmed, or almost confused by, the conflicting emotions. Blogging helped me find purpose and revisiting the Disney films I love so much helped me to focus, as I looked for messages and guidance and opportunities to gain insight into my experiences.
The fact was that although my dad died a year and a half before Ben, since I was so busy as Ben’s caregiver, I did not have the time to really grieve that loss. When I lost Ben and I no longer had caregiving responsibilities, I was able to truly grieve, but it was for the loss of both of them. It was also the loss of what had become my definition of myself as a caregiver.
In this second year, I still profoundly felt Ben’s absence, and yet, I have found that he is always present. I had to establish a new normal. I would say that this year was spent integrating my caregiving experiences and grief with rediscovering myself and redefining my life. I have made changes, particularly to my apartment, and I’ve documented those in this blog. The changes have not come easy, but Ben has been a part of the choices I’ve made. And, there are some things that I cannot let go, which was why I got so upset when his computer crashed and insisted on restoring his music library on his desktop computer with his speaker, and why I have continued to use his desk chair/wheelchair although it is not in great shape and I have new and beautiful Mickey Mouse chairs that he would love.
I admit that I dreaded this day and have been very emotional even thinking about this blog post. In general, although I have not forgotten the scary and devastating times, I prefer to summon the fun and loving ones. Unfortunately, summer, and these few days in particular, are spent reliving Ben’s last days, with hospital and hospice memories. There was a lot of love, but there was ultimately loss. I can’t seem to stop replaying the scenes in my mind. I’m trying to embrace the sadness as part of the process of grieving and as a quiet time to think about Ben and about us, and how much I miss him. I give myself permission to be emotional.
Last week, I did have a wonderful distraction, traveling to Chicago and visiting my dear college friend, Monica, whom I hadn’t seen in many years. She named one of her daughters Abby and I’d never met my adorable namesake, her adorable sister, Andi, or even her husband, Mike. Caregiving certainly kept me from going anywhere, but I’d lost touch with so many people I cared about. Catching up with Monica and meeting her family was a most special time and the happiest I’ve been in a long time. Spending time with good friends, being with kids, laughing and exploring are fun and treasured moments for me. Monica wanted to know about Ben, and it felt good and important to talk about him and our relationship in the good times and the bad times. Ben knew how important my friends were to me, and he would have loved Monica’s family and seeing me with them. He also would have enjoyed Chicago, and although it was sad that he was not actually there, I delighted in the Shedd Aquarium and the architecture, and especially The Bean, through his eyes. Yes, it brought some tears, but it also brought comfort. I can keep living and honor and carry Ben with me all the time.
The Bean sculpture in Millennium Park. It was probably the most sentimental place we visited, since Ben’s nickname was Mr. Bean.
Abby 2.0, my namesake, Monica and I taking our picture off of the reflection from The Bean!
Watching the historic solar eclipse with Andi and Monica. Ben, the science and documentary lover, would have relished this moment.
I learned a lot about myself over the past year. In Walt Disney Pictures’ Alice in Wonderland, Alice said, “I can’t go back to yesterday, because I was a different person then.” Caregiving and watching Ben battle ALS changed me. I felt and expressed love and compassion in such deep and immeasurable ways. I came to recognize a strength and bravery in myself that I still have trouble acknowledging, but I do know they are there. I found myself in caregiving and I want to support other caregivers whenever possible. I’m redefining my life with things that make me feel happy, satisfied and useful. I am not quite there, and I have my setbacks, but I am on my way, and I know that Ben is with me on my journey.
I don’t know what the next year will bring. I do know that I will take Ben with me in that special place in my heart.
I’m thinking of you today, my dear and silly Ben, as I do every day, free from the constraints of ALS and walking, talking, eating and playing your music. I love you.
Ben and I at Walt Disney World, Halloween 2011. Good memories are always a comfort.