Finding Nemo, Dory and Myself at The Georgia Aquarium

I got a smooch from Imaq!

I spent the last couple of days at the Georgia Aquarium, participating in some animal encounters. Yes, I found Nemo, and I found Dory, but I also think of Georgia Aquarium as a place where I found myself.

Last summer, I went to the Georgia Aquarium for the first time. I originally learned about it from National Geographic magazine, which was a favorite of my dad’s and mine. I still have some of his very old copies and some of my National Geographic School Bulletin kids issues- my parents always got a subscription for me. When I learned that Georgia Aquarium offered an otter encounter, I had my plan! I wrote about that experience last year (click here for that post). It was and it remains a place where I strongly feel Ben’s absence and presence. ALS took so much from Ben, including the opportunity to enjoy places. It took many things from me, too, including the ability to share experiences with him. I remember that last year at the Aquarium was the first time I felt real anger that he could not have lived to enjoy it. I still feel that anger and sadness, but I also feel him and look for signs that he is with me. Going to the Georgia Aquarium is something positive to do at this time of year, since summer is a difficult for me, filled with memories of Ben’s last summer, spent in the hospital, and the anniversary of his departure from this world.

I cannot rave and gush enough about the Aquarium. It is a truly spectacular facility. The research it conducts and is engaged in, along with the care it provides for its residents, is supremely impressive. I easily spent two full days there and I could have returned for more. I could watch the sea and river otters for hours and I don’t know how long I spent absolutely mesmerized by the beluga whales. I saw the dolphin show twice because it is fabulous and the dolphins and their human trainers are astounding! Standing in the Ocean Voyager tunnel while huge whale sharks, manta rays, sea turtles and a host of other magnificent fish swim overhead and around me is daunting and yet awe-inspiring! It’s even fun to touch the purple sea stars! I loved watching the divers wave to the children from the huge tank, where they are surrounded by the whale sharks- the kids’ reactions are priceless! There was a little boy of no more than four years old and wearing a whale shark t-shirt who told me all about whale sharks as he waited so excitedly to see one for the first time and his parents laughed as they explained that they planned the visit just for him to see the whale sharks. For these children, whether they pursue a career dealing with sea life, form a commitment to protect and be kind to the planet and its inhabitants, or enjoy the wonder around them, there is no doubt that the Aquarium will leave an unforgettable and positive impression.

I found that this year, I had a very hard time with the penguins. I did not spend much time watching them. For Ben and me, penguins were very much “our” animal. We collected all kinds of penguin things. At one time, I had planned a visit to a local aquarium where they were kindly going to accommodate Ben’s wheelchair in a special encounter area. Unfortunately, we couldn’t make it and never had another opportunity to visit.  Last summer, I did two wonderful penguin encounters at the Georgia Aquarium, but I struggled with guilt that Ben never had the chance to actually meet a penguin. Penguins are truly delightful creatures, and I was surprised to learn that they are kind of referred to as having temperaments like cats- if they don’t warm to their trainer, they will not do what’s asked of them! As adorable as they are, and as fun as my memories are, I find that I cannot enjoy them as much as I did when I was with Ben. It hurts to watch them. This strikes me as odd, because there are so many things that I do for Ben, in his memory, because I know he would love them and I feel like I enjoy them through his eyes. The dolphin shows are that way for me. I feel Ben’s excitement and I think I cry at the shows because I am overwhelmed by conflicting emotions. I feel like the turtles send a little hello from Ben. Maybe the fact that we collected penguins, particularly when they were couples, makes penguins different. I suppose I should have learned by now that grief is unpredictable in this way.

My passion (or maybe obsession) with otters is my own. And, my desire to interact with animals is something that has always been my own. Ben always found it endearing and a bit fascinating that I had such a deep connection with my pets and that I had boundless love for animals. My dad and I shared that love for animals. The Georgia Aquarium holds a kind of magic for me because it enables me to meet and interact with some of the animals I adore. I don’t think I ever realized how much that means to me down to my core. Of course, it’s fun to meet and greet the animals, but it is a deeply emotional experience for me and one where I feel like I have really found myself. I love to learn about the animals, but I learn even more just watching the staff interact with them and talk about their distinct personalities and preferences. There is so much love, respect and passion there, and it fills my heart to get a glimpse of that and to be a part of it in encounter programs, and even by talking to the staff and volunteers in the halls of the Aquarium. My love of the Georgia Aquarium has strengthened my personal dedication to support the efforts of this facility to raise awareness and understanding of, and to protect, sea animals and their environment.

That’s cutie Brighton next to me.

My buddy is Cruz.

I know that Ben would absolutely love doing the encounters, though he did not swim so I don’t think he would have opted for the beluga whale encounter. For me, however, being at the Aquarium and participating in the interactions is almost a spiritual experience. It is calming and almost meditative, yet energizing, to watch the animals and to learn about them. Feeding and practicing various behaviors with them is pure delight. I find myself wondering how and if I could work with animals after I retire from teaching.

I do look for signs that Ben is watching me. Maybe they are coincidences, but I choose to believe that they are signs, or maybe pixie dust! I got a couple during this visit. I arranged two sea otter encounters, because one just wasn’t enough, and during the first, I asked about Mara and Gibson, the two pups about whom I had been reading and watching videos since they were rescued and given forever homes by the Georgia Aquarium. Seeing them was going to be a highlight of my visit. I was told how to spot them in the habitat, and I was eagerly anticipating seeing them. During my second sea otter encounter, while we were being told about sea otters, a little otter saw one of the trainers with food and she serenaded us with what I will call a symphony to try to get some food. The trainer smirked and tried to hide, but the otter was not fooled. I suspected that it was one of the pups and I asked if it was Mara or Gibson- it was Mara. I got goosebumps! Not only did I get to see the pups, but we were able to feed them. I was so excited I almost cried. They are as adorable as I had imagined. And, louder! Magic was on my side that they were ready to participate in the encounters. Or, was it Ben? Maybe both!

The beluga whale interaction was one of the most extraordinary experiences I have ever had. It was literally out of my comfort zone to wear a bathing suit and wet suit. It was also daunting to get into the water, since the interaction took place in what was actually the very top of the belugas’ habitat- that is very deep water with five beluga whales and three harbor seals. I know how to swim, but I was still scared of falling off the rim (think Nemo and Dory and the drop-off). Once face to face with the belugas, I was completely in love. That huge “smiling” head popped up unexpectedly and simultaneously startled and delighted me. Kissing and being kissed by Imaq, the Aquarium’s largest beluga (around 3000 pounds and 14’ long), was the opportunity of a lifetime, as was having (and losing!) a splash party with Maple. The rest of the world fell away for me as I watched, worked and played with these big belugas. I have never felt like that before.

There are staff photographers at all the encounter programs. As I reviewed my photos from the beluga interaction, I was not at all surprised to see in almost every single photo my huge smile and laughter. What really caught my eye was one photograph in particular, in which I have a certain smile with my tongue through my teeth and my shoulders hunched. It was an expression that Ben loved and always imitated because he said it showed my utter delight. Yes, the photographer took tons of photos, but the fact that she captured this one on film is, to me, a sign from Ben that he knew this was where I was meant to be and most myself, and that he was happy for and present with me. I am going to print this photo.

This was an expression that Ben loved and always immitated. That it was captured on film is, for me, a sign from Ben.

My dad would have loved this experience, and he would have been proud of me for not letting my fear keep me from following my curiosity and participating in the program. I am generally a nervous person. I’m sure my dad was watching me and I’m grateful that I can feel his presence in these moments. When I was young, he took me to the Coney Island Aquarium, and although I was so excited, I was also terrified of the whales swimming head first towards the glass as if they could break through. I was also repulsed by the octopus, because I expected it to look like the cute cartoon characters I had seen. I will always remember my dad’s laughter at my reactions to the animals, as well as the love we shared for animals.

I must also mention the Sea Lion encounter, because it was absolutely wonderful. Our group leader and the team were inspiring to watch because of the rapport they have with the sea lions and, as I have noted, the love they have for them. I look at the photos and see my joy. It was the joy that I always found when I looked at photos of Ben during our visits to Walt Disney World. It’s pure and deep. It transcended his physical appearance.

I feel very lucky and grateful for these opportunities. They are part of my treasure trove of new memories and symbolic of how I am moving forward but carrying my loved ones in my heart as I journey ahead. It is also a wonderful feeling to discover ways that I can find peace and find myself. Going to the Georgia Aquarium is likely going to be an annual adventure that, in my own way, I will share with Ben and my dad.

 

Ohana Means Family- Who is Yours?

At this time of year, when I think about the upcoming anniversary of the day that Ben left this world, the notion of family comes strongly into focus and reminds me of how my definition of family has changed over the years. Although I love the film, Lilo and Stitch and its messages about family, love, acceptance and grief, I used to be troubled by its very famous quote, “Ohana means family. Family means nobody gets left behind-or forgotten.” Unfortunately, to a large degree, this has not been my experience and that makes me sad. For various reasons, and sometimes on the grounds of religion, there has been conflict in my family, and caregiving for my grandmother magnified our issues after my mom died. I learned the difficult lesson that, with rare exception, aside from my dad, I could not depend on the love of my family to provide the support that was needed. When I lost my dad, I lost the sense of family that I always thought of as my anchor. Family frequently let Ben down, too, and usually, it was not something that I could prevent, though I could support him through it. I was someone who always said that family was important- it was also what I was taught- but I didn’t feel the unbreakable bonds that I believed should exist. In addition to grief over the loss of my dad and Ben, I was grieving an overarching sense of family. As with all grief, I learned to co-exist with it despite reminders that still do make me feel sad and alone. However, reflection has lead to new perspective, and the Pollyanna in me has enabled me to expand my view of Ohana. (Click here for Pollyanna’s instructions on how to play The Glad Game.)

Ben and I were Ohana, with or without a marriage certificate. When Ben was diagnosed with ALS, we were not legally married but, of course, there was no question that I would be his caregiver. I had friends and relatives who told me to leave him because we were not married, which was absurd to me, because I loved him and Ohana means nobody gets left behind. His family members were certainly upset by his diagnosis, and there were many promises made of visiting and helping him. For the most part, those promises did not materialize into actual visits or even regular expressions of concern about how he was doing. He reached out to people and then they usually responded, with what became to him empty proclamations of love and caring, but they rarely took the initiative to reach out to him. It hurt him and frankly, angered and shocked me. Ben witnessed my devotion to my dad–he listened to our countless daily phone calls, watched me cook and shop for him, visit him on weekends, accompany him to his doctor visits, make follow-up calls to doctors and companies treating his cancer, just as I did for Ben. That was not happening for Ben with his family, with rare exception. There was, however, a lot of drama that was unnecessary, ridiculous, and selfish.

I am grateful that while Ben was in the hospital, one of his daughters frequently visited him. She was also with him at the end. She and I had a lot of time to talk in those weeks. We were close for a time, but that seems to have disintegrated, which is, for me, yet another disappointment in the experience of family and not really unexpected. I try to focus on the few nice surprises that occurred along the way, in the form of the few family members that expressed genuine caring and concern. We shared a love of Ben and respect for each other that continues today.

I found in caregiving that the people who are least involved have the most opinions and make the most judgments. I will admit that it was, at times, difficult to put aside the drama and just focus on Ben’s needs. Family came to the hospital and talked to him about his going home, getting his hopes up without asking any questions or having realistic information, but with plenty of judgment, especially of me. A friend of his visited and tried to dissuade him from separating from the vent on religious grounds after giving me a hard time about the issue. While visits can be a good time for a caregiver to take a break, I could not leave people alone with him because communication itself was challenging and discussions were often inappropriate and inaccurate. Mostly, they were not much of a comfort to him. This is not the way I want to define Ohana.

Just as I have found ways to reshape my life, I have also reshaped my perspective on family. As I have said before, I am eternally grateful for an incredible group of friends. Though they do have families of their own, these supportive and loving people embrace me and are my Ohana.

Summer is now become a time when I travel to visit some of my friends. I’m beginning to see it as the time I travel to see my family. A few weeks ago, I visited my friend Dorie, which came with wonderful revelations (click here for that post.) Last week, I visited my college friend Monica and her family in Chicago. She’s got two absolutely fabulous daughters, one of whom is my namesake! I love them all. We did fun things like go to a Cubs game (Cubs won!), visit a zoo and discuss the plans for our upcoming trip to Walt Disney World, which will be a tribute and celebration of Ben and my cat, Disney. For me, the best part of the visit was just sitting around on the sofa and talking or watching videos. It’s a beautiful thing to feel like I am part of the lives of these children and to feel like family, accepted, understood and even appreciated for all my quirkiness. I could continue to lament Ben’s and my lack of caring relatives, but I am no longer under that cloud of grief. Instead, I am so very proud and fortunate to be surrounded by people who have been more family than family.

Monica, my namesake, Abby and I getting splashed at the dolphin show at the Brookfield Zoo.

With Monica at Wrigley Field- Cubs win! August 2019

In caregiving, if the people whom you’ve defined as family are not supportive, of course it is hard not to dwell on it. As someone who is emotional, I won’t suggest that you ignore your feelings. So, what can you do? If you’re a primary caregiver, as long as you keep family informed, express needs and set boundaries for what and when you will dispense updates, you will have some level of control of, and grasp of, your caregiving responsibilities and scenario. Family members will have to live with their decisions and you will be able to plan accordingly. It doesn’t mean that you won’t be disappointed or saddened, but you will have a keener understanding of your circumstances and interpersonal relations. This is likely to allow you to detach a little bit as family interactions happen, or don’t, drawing attention to the positive aspects of visits (or not) on your caree.

For your own self-expression and reflection, things you might consider are: keeping a journal, seeing a therapist, venting to friends who are good listeners, attending a support group or, if it is difficult to arrange to leave home, there are online and phone support groups. But, please don’t lose focus on the important, loving and invaluable work that you are doing for your caree.  As I have sorted through the many memories surrounding Ben’s care, I have learned to let go of (or at least work hard to fight) anger and resentment, and I have begun to recall incidents more as a matter of fact and sequence than with emotional attachment to the people who let us down. I can look back and feel grateful that I was able to show Ben so much love, though I also wish with all my heart that we never had to go through the experience.

If you are a family member of a caree, please be honest with yourself about the relationship that you have had with this person and the caregiver. Be realistic about what you can and are willing to do. If you want to help, ask questions about how you can help and also before judging. Remember that this is not about anyone but the caree, and that the primary caregiver does have the greatest perspective, knowledge of and responsibility to the caree.

As you move through caregiving, grief, and life, it is so important to have a clear understanding of the people in your life who are reliable and truly devoted. This does not necessarily mean cutting people off from your life, but rather knowing who will be there to have your back. Lip service is irrelevant. Ben and I learned that we could not rely on his family. Fortunately, we did have friends who stepped in and helped without needing to be asked. I have indulged in and expanded my family of friends. Maybe they are not the traditional definition of family. Yet, they are. Like Stitch, I am grateful to have them in my life. Know who your Ohana really is because they will not leave you behind. That is truly something to celebrate.

Stitch gave Ben some extra love! July 2014

Halloween with my buddy in 2010. Ben could still take photos at this point, which makes this picture especially sentimental.

 

The Rainbow Connection- The Lovers, The Dreamers, Kermit and Me


Writers: Paul Williams, Kenny Ascher
Publisher: Sony/ATV Music Publishing LLC, Warner/Chappell Music, Inc., Walt Disney Music Company, Universal Music Publishing Group

Yesterday, I couldn’t resist the opportunity to see a special theatrical screening of The Muppet Movie in honor or its 40th anniversary. How fun to visit with my lovable friends on the big screen and remember the fun of that film! Watching the film felt like traveling back to a whole different era- a more innocent time. What seems technically so simplistic compared to some of the CGI effects we see today, for me tells a strong story that truly invokes our imaginations. Disney has retained this in much of its animation, and it’s precisely this whimsy that allows me to get lost in reflection, fantasy and dreaming.

There are so many silly and funny parts of The Muppet Movie, but the part that has touched my heart for all these years is Kermit strumming his banjo and singing The Rainbow Connection. I love the song, and frequently listen to Kenny Loggins’ version. For me, it’s a song of hope that allowed me to see past the bad times and encouraged me to stay a dreamer and keep wishing on stars. It’s the song that validates my firm belief in Disney magic and pixie dust.

I guess that I relate a lot to Kermit in his innocence. I think back to my difficult times, particularly during caregiving and grief, when I felt so vulnerable, and struggled with sadness and anger, but, like my mom, I could at least get lost in child-like delights like a Disney film. I unabashedly admit that I like the idea of fairies and a Fairy Godmother and wishing on stars and rainbows, regardless of whether or not they are tangibly realistic. As the song says, we never know if our wishes will be heard or answered, but it’s a comfort and joy to me to believe and to have that faith. It’s the reason that Ben and I tossed coins into the Wishing Well at Cinderella’s Castle each time we visited Walt Disney World after his ALS diagnosis.

Some people have told me that I am silly in my whimsy and talk of Disney, and they feel compelled to give me what they would deem reality checks, but to talk of rainbow connections and dreams come true is not a matter of being somehow ungrounded. I’ve dealt with the harshness of real life. I still relive some of those experiences and I know that they have changed me. However, they never made me bitter or led me to lose my sense of wonder and ability to smile at rainbows and the dreams that they hold and may fulfill. For me, finding the rainbow connection is like listening to Peter Pan and knowing that “faith, trust and pixie dust” will make things okay. It is the ability to tap my inner child and put the bad things in perspective, balanced with the possibility of dreams come true. It lets me enjoy my memories and wish for more. It lets me know beyond a doubt that Ben is free from the constraints of ALS, eating, walking and playing musical instruments. It allows me to see the messages that I believe are sent by Ben, my parents and my grandma. I may always cry easily and have setbacks of sadness, and I know that all of my days will not be sunny, but you can’t get a rainbow without the rain, and I have made the choice that I always want to be on team Kermit with the lovers and dreamers.

The Rainbow Connection

Why are there so many songs about rainbows
And what’s on the other side
Rainbows are visions
But only illusions
And rainbows have nothing to hide

So we’ve been told
And some choose to believe it
I know they’re wrong, wait and see
Some day we’ll find it
The rainbow connection
The lovers, the dreamers, and me

Who said that every wish
Would be heard and answered
When wished on the morning star
Somebody thought of that
And someone believed it
And look what it’s done so far

What’s so amazing
That keeps us stargazing
And what do we think we might see
Someday we’ll find it
The rainbow connection
The lovers, the dreamers, and me

All of us under its spell, we know that it’s probably magic

Have you been half asleep?
And have you heard voices?
I’ve heard them calling my name
Is this the sweet sound
That called the young sailors?
The voice might be one and the same

I’ve heard it too many times to ignore it
It’s something that I’m supposed to be
Someday we’ll find it
The rainbow connection
The lovers, the dreamers and me

La da da di da da dum da duh da da dum di da ohhh

What Mary Poppins, Bert, Walt and Merlin Knew About Life’s Ups and Downs

Disney, Mary Poppins, Grief, ALS

“Mary Poppins”
Disney and Cameron Mackintosh Musical Based on the Film

This is a time of year that I simultaneously eagerly anticipate and dread, and I find that am more reflective about my past, my present and my future. As a teacher, who doesn’t love time off from work!? However, this is also the time of year filled with memories of time spent in the hospital with Ben as he succumbed to ALS. Mary Poppins and Bert said, “Open different doors.  You may find a you there that you never knew before. Anything can happen.”  I see that I am the ever-evolving product of all the good and bad experiences, and although it took me a few years to get to this point, I have been following their advice, opening new doors, doing new things, rediscovering myself and considering new paths.

Last weekend, I visited my good friend, Dorie, whom I have known since high school. We had lost touch for a while, but the magic of Facebook brought us back together. For the past few summers, I have gone to visit her upstate and she and her husband have come to NYC to visit me and enjoy some theater. Last weekend, we went to a place called Animal Adventure Park. I love animals, and here you can pet and feed most of them, which is great fun for me.

I have always loved animals. Ben became enamored with them after enough time with me. We shared a love of penguins, and he became very attached to my cat Tiffany (she was not so attached to him!) and to our cat, Disney. It was on a whim last summer that I followed a dream to visit the Georgia Aquarium and participate in special encounter programs with sea otters, penguins and dolphins. During those sessions, I realized how much I truly love being around animals and I feel a tremendous sense of fulfillment when I interact with them. I admit that it broke my heart that Ben could not be at the Aquarium and meet the penguins with me. Still, the animals were a huge source of comfort, joy and inspiration to me.

When I researched the Animal Adventure Park after Dorie mentioned it, I discovered that they have a sloth encounter, in which you learn about, feed and pet them. Sloths are among the animals I have been so eager to meet, and fortunately, Dorie and her husband were also enthusiastic about it. I then discovered that they have a river otter encounter. I am kind of obsessed with otters- river and sea otters. I could not resist the opportunity to shake paws with an otter and thankfully, Dorie was willing to accompany me!

The encounters did not disappoint! They were both wonderful. The animals each have their own personalities and preferences, which is fascinating and delightful. I was in heaven. I knew that Ben would have enjoyed it and I felt good about acknowledging him. This time, I didn’t feel angry or guilty about enjoying it without him, I was proud and happy to keep him with me in my heart and thoughts. I felt the closest to myself that I have felt in such a long time. I was with people I care about doing things that I absolutely love.

Afterwards, I posted photos on Facebook- after all, a large portion of my news feed is dedicated to otters and sloths, and now I’ve actually met them! Several friends commented that I looked so happy and that my smile was huge. I feel grateful to have friends who are always cheering me on and who want to see me thrive. I had to smile and laugh just seeing how positively gleeful I was. Looking at myself in those pictures, I saw that I have once again truly found my smile. I even fantasized about possibilities of working with animals in the future.

Walt Disney said, “We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.” As usual, Walt was right. I am a shy person by nature, yet I am also friendly, reflective and interested in so many things. After I lost Ben, I had to reinvent and reshape a social life. Of course, as I have always said, I am so grateful to have incredible friends and to have friends that go back to my childhood. Still, I had to take a more active role in socializing. When Ben was ill, I got very used to doing things on my own. I am comfortable on my own, which is a good thing in many ways, though it can be lonely and isolating. I have opened doors and done things like taking the opportunity to reconnect with friends like Dorie. Next week, I will head to Chicago to see my college friend Monica and her family, which has become a favorite annual tradition. Although I am a huge klutz and do not generally follow sports, I have become a devoted Cubs fan and love going with Monica to Wrigley Field- another new side of myself! I am also heading back to the Georgia Aquarium. It simply gives me so much joy to be with the animals in that absolutely spectacular place. This time, in addition to the sea otters, I will meet sea lions and even get into the water with beluga whales! Donning a wet suit is something I wouldn’t have imagined doing, but curiosity has taken me there! I have also opened new doors to build new friendships. It hasn’t been easy, but I have indeed met many lovely people and learned new things about myself in the process.

In Disney’s The Sword in the Stone, Merlin explains to young Arthur that, For every to, there is a fro. For every stop there is a go, and that’s what makes the world go round. In life, there are ups and downs. In grief, there has been progress but there have also been setbacks. I have discovered that I am a person who wants and needs to open doors, but I have to do it in my own time. I feel like I have established a more consistent balance of keeping Ben in my heart while delving back into my life. I still do things that I know he would like in order to experience them through his eyes, and for him, but I also allow myself to venture forth on my own terms, being less of an observer and more of an active participant in my life. I know there will be tos and fros and stops and gos, and I am getting better at letting myself feel them all without getting angry at myself or judging myself harshly. I would not have expected that summer would be a time that I would find my smile, but I do believe in pixie dust, so maybe it’s Disney magic that’s clearing my path.

It was a dream come true to hold a little otter’s paw!

 

I found my smile!

 

 

Yesterday- Memories, Grief, And Looking Towards Tomorrow

On Friday, I saw the film Yesterday. It’s not a Disney film, but I see those, too! It’s a fun film about a glitch in time (the one everyone worried about, which never occurred, at the stroke of the year 2000) in which all memory disappeared of the existence of The Beatles. It’s hard to imagine. I saw the film largely because of Ben’s love of The Beatles. As I frequently do, I wanted to see it through his eyes. When I attend Disney films, I often sharply feel Ben’s absence, and sometimes I do feel his presence, but this time I wanted to be his eyes, enjoying it as he would. It had emotional moments for me, and, even without the obvious title, made me think about “yesterday,” and the concept of time as I’ve journeyed through caregiving, watching Ben battle ALS, coping with the depths of grief and the adjustment to co-existing with it.

If I travel back enough yesterdays, I remember that the first song I ever danced to with Ben was The Beatles’ Twist and Shout. We met at work and at a gala, before we were actually dating, when that song came on, he grabbed my hand and took me to the dance floor. I learned how much of a fan he was of The Beatles and developed more of an appreciation of them. Now, I listen to the albums more often and with more love. During the yesterdays of Ben’s ALS struggle, when we were fortunate to travel to Walt Disney World several times, at Epcot’s England pavilion, I loved watching Ben watch and play the air guitar along with the live bands as they performed music of The Beatles. During the yesterdays of Ben’s time in the hospital, and even on his very last day on this earth, musicians visited him to play Disney music and some of Ben’s favorite Beatles songs, including his favorite, In My Life. On his first day in the hospice unit, Ben had a visit from one of the very kind residents who treated him early on in the hospital, before his tracheostomy and feeding tube. They spoke for quite a while about music and which was their favorite Beatles album. It wasn’t easy for Ben to communicate, but the resident did a great job reading Ben’s lips and I was there to help translate. This resident did not have to visit, but he was a lovely, compassionate soul, and he had to deal with one of Ben’s crises on his very first day as a resident. I know that he will be a wonderful, caring doctor. A lot of yesterdays. A lot of memories. A lot of sadness. But, a lot of love and even laughter in the darker times.

Walt Disney World, 2011.
Ben’ in one of his many Beatles tshirts.

The lyrics of Yesterday start with

Yesterday
All my troubles seemed so far away
Now it looks as though they’re here to stay
Oh, I believe in yesterday

In the film Yesterday, some of the past is erased. It’s a flawed plot, but it did make me think. Imagine if The Beatles had not become The Beatles. Imagine if John Lennon had not been shot. And, more to the point, imagine if Ben had never been diagnosed with ALS. Imagine if there was no ALS? How would life play out? Thoughts like that do at times drift through my mind. It happens often when I see elderly couples walking hand-in-hand, because Ben used to always comment that we would be a couple like that.

2010- Shortly after Ben’s ALS diagnosis and still standing, albeit unsteadily. In his favorite Beatles shirt at a fair with my Pets en Voyage products.

The concept of time is fuzzy when I think back to my days taking care of my dad and Ben. I measure time by significant events in the progressions of their disease and then “firsts” without them and, of course, milestone dates like birthdays and anniversaries. February is a month I dread because it was my dad’s birthday, Ben’s birthday, the month when my dad died and, most recently, the month that my cat Disney died. Summer is the marker of when I lost Ben. The start of each school year reminds me of the insanity I felt when I returned to school a couple of weeks after Ben died, feeling the drastic change of not having the same caregiving responsibilities, which only magnified the feelings of loss and the accompanying grief. They say time heals all wounds. When it comes to grief, I think time helps you adjust to and learn to coexist with the grief. Sometimes my experiences feel like yesterday, sometimes they feel like further in the past.

Indeed, before Ben’s diagnosis, it’s not that life was perfect- it never is- for one thing- my dad had cancer, but an ALS diagnosis sent us into a tailspin. There was always the wish of going back to yesterday.

The narrator says this in reference to Cinderella’s grief over the loss of her mother.
Cinderella © Disney 2015

The narrator (Fairy Godmother) of Disney’s 2015, live action Cinderella said, “Time passed, and pain turned to memory.” This is one of the Disney film quotes that always gives me pause. I can look back at my yesterdays and say that after nearly four years, I still feel the pain of losing Ben. Pain has not turned to memory, but I can view that pain as part of sixteen years of so many memories with him, only the last six of which involve his life with ALS and mine as his caregiver. There has been a gradual shift from continuing to live within the pain of suffering and loss, to embracing the wide range of memories, and the feelings they bring, but also defining and diving into my new “present.” Pain, sadness, joy, anger- a bevy of feelings and emotions related to my yesterdays- are all part of cherished memories and I see that they continue to shape me and lead me towards a bright tomorrow. I even made sure that I visited Abbey Road when I returned to London in 2016- it was a way to honor Ben, have him present with me, and see London, one of my very favorite places but one I never saw with Ben, through his eyes. Yes, I wish I could erase ALS, but this was our unique story. It did not have a Disney happy ending, but it did have love and even some pixie dust. I will carry in my heart all of those yesterdays as I face today and tomorrow.

Feeling like a Beatle, as Ben would have wanted to do.