Last week, in the spirit of the Easter season, I honored Winnie The Pooh’s buddy, Rabbit. Today is Easter, and it seems a perfect time to honor dear Thumper, from Walt Disney Pictures Bambi. I’ve always loved Bambi, and when I first started this blog, I wrote about the song Love is a Song that Never Ends and how it resonated with me in caregiving and in grief. I recently watched Bambi again and was touched by Thumper’s relationship with Bambi in a whole new way.
Thumper was the very adorable and lovable young forest gossip, and he certainly didn’t always say the right thing. He was the one to point out that Bambi was “kinda wobbly, isn’t he?” and “he doesn’t walk very good, does he?” This is not exactly the positive reinforcement someone wants when struggling and self-conscious! And while his mother had to remind him that “if you can’t say something nice, don’t say nothin’ at all,” Thumper was just a child making an observation, albeit tactlessly, but his heart was in the right place. Actually, he was quite devoted to his new friend, the young prince Bambi.
Thumper and his siblings (also incredibly adorable little bunnies) play with Bambi but also watch out for him. They anticipate where he is going to struggle and they gather around to help him so they can play together. Thumper was Bambi’s motivation. I especially love this clip, in which Thumper assesses the situation on the ice and tries to position Bambi’s legs, advising Bambi to “walk both ends at the same time.” It doesn’t go so well and they both end up skidding and falling. It reminded me of the way I had to work with Ben to help him up and figure out the best way to get around. We each had to trust each other and there were times we were nervous and other times it was fun. There were times that I managed to keep him from falling and got him safely onto the bed or a chair. There were also the times that we both ended up on the ground, fortunately unharmed. And, like Thumper, we often found ourselves saying, “Gee whiz, what happened that time?” I always loved this scene in the film, but now I see it in a new light.
Thumper never gave up on Bambi or their friendship in the same way that as caregivers, we never give up on our loved ones. And, Thumper was so happy when Bambi did have an accomplishment like walking steadily. Though Bambi is first learning to navigate the world and Ben was adapting to new ways to do some tasks and dealing with losing the ability to do others, I could relate to Thumper’s positive attitude of problem solving and encouragement.
Also touching was that he never left Bambi behind in pursuit of his own fun. ALS is known to be an isolating disease, particularly because you lose the ability to communicate. Thumper was determined to have Bambi join him with their other forest friends. It is an important lesson for all caregivers, friends, relatives and others to find some way to remain engaged with our loved ones. Visits, cards, texts, emails, photos, videos and a simple presence can all help a person feel remembered and included in life. Ben and my dad always enjoyed hearing that people thought of them. As their caregiver, it lifted own spirits when my friends reached out to them, too.
The film also deals with Bambi fear, confusion and sadness when he loses his mom. He did not know what the future and the world held in store. But, time went on and winter turned to spring, and Bambi grew up. He reunited with Thumper and Flower and the rest of his friends and all their families, and none of them ever forgot the friendship they shared. Thumper and Bambi- and a dose of Disney- remind us that love never dies and beautiful memories stay strong and sustain us as we move through life’s good and bad times.
If you haven’t seen the film, or haven’t watched it in a while, treat yourself. It is a beautiful story.
To everyone who celebrates it, Disney and I wish you a Happy, Peaceful and Healthy Easter!
And, since the holidays coincide, a Happy Passover as well!
Pooh gets stuck in Rabbit’s home entrance, so Rabbit tries to work around the problem! From Walt Disney Production’s The Many Adventures of Winnie the Pooh (1977)
With Easter coming up, I guess bunnies are on my mind. Since I have been thinking about the importance of routines and rituals with regard to caregiving and grief, I am going to put the spotlight on Winnie the Pooh’s buddy, Rabbit. Rabbit is the friend who has to have everything just right, who gets flustered when anything goes wrong or things are not in their proper order. He saw himself as the caregiver of his friends Pooh, Eeyore, Tigger and Piglet. Chances are, as a caregiver, he would put excellent routines in place. He would organize schedules and supplies with impeccable care. He would also be sent into a tizzy at the slightest change in plans but would try to come up with a work-around. Crises might send him into an utter tailspin but Rabbit would be the one to try to solve a problem, possibly more to maintain the order he needs in his world than to show compassion. I think that he might make me nervous if he was my caregiver. And, as caregivers know, trust and compassion are key. What do you think?
Although chaos became my normal during my years of caregiving for my dad and Ben, routines were a great starting point. Since I was working while Ben was at home, we had several routines in place for his safety and ease of getting through the day. I arranged his food so that he could get to it easily. Rabbit would have been furious with my inability to keep things neat, but my priority was to accommodate all kinds of supplies and move things wherever they fit to make other things accessible for Ben. At one point, my dresser was against my closet door and I basically stuck my arm into the closet and grabbed whatever I could, hoping it would be a coordinated outfit. Rabbit would never approve. I tried to see the humor, but humor is not Rabbit’s strong suit. Every day, Ben sent me a text to let me know that he was awake and at his desk and I knew when to expect those texts so I did not worry. I texted when I left school and he let me know if he was okay and if he needed anything. Of course, we also texted throughout the day, and in the case of a problem. Texting became essential when he had trouble answering, holding and speaking on the phone. As each event of ALS struck, we came up with a plan to deal with it. After he died, I missed those routines, especially sending my daily, “I’m free!” text to let him know I’d left school. It’s those routines which seem so silly that became rituals and those are the ones that can still make me cry when I think about them.
Ben and I lived in an apartment building without a doorman, and when Ben had trouble getting to the buzzer, we had to make special arrangements if someone was to visit and I was not home. Ben was in a visiting doctors program through Mount Sinai Medical Center, and those appointments could be hard to schedule. When Ben did hire a private pay aide for a few hours each weekday, all visits had to be coordinated when she was there or when I got home from school. It was a finely choreographed day! However, even the best ballerina sometimes trips or falls on stage, and as most caregivers know, days can be very unpredictable. At least routines offered a structure and a jumping point.
Ben and I also did maintain our rituals whenever possible. We went to the opening weekend of Disney films until he could no longer get down the stairs to go outside. When we were fortunate to be able to return to Walt Disney World, we enjoyed the attractions that we loved, even though there were challenges. Ben really did not want ALS to stop him. On holidays, I decorated the apartment after I put Ben to bed, so that he would have a surprise waiting for him in the morning.
When I lost Ben, I lost my structure. There were no routines in place. I only had to tend to myself, and, frankly, that’s never been my favorite thing to do. I could spend an entire day sitting on the sofa thinking about what to do, and end up doing nothing, relieved that I could just go to bed but lamenting how unproductive I had been.
Work became an important routine because it did structure my day and get me out of my apartment. I worked at a stress-filled middle school, but it filled my hours and gave me purpose. In what was suddenly my free time, I wrote a lot, in what has ultimately become this blog. I started to do things that I missed, like socializing with my friends and going to the theater. But, theater did not offer the same escapism and diversion as it always had- I felt guilty about enjoying myself, I had too many memories of when I could not go to the theater and how difficult it was to enjoy myself when I was able to go out, and I had to accept that I would never again be able to do these things with Ben. I spent many weekends staring into space. I was hard-hit by Ben’s absence, just a year and a half after losing my dad, which was another loss of routine, and the people who had consumed my life and my heart. For the first year, I marked in my calendar every single Wednesday, the day Ben died, noting how many weeks had passed, and thinking about him even more than usual, setting aside time to reflect and remember.
Rituals have become a vital part of my being able to dive back into the world of the living. I have maintained some of Ben’s and my rituals and created new ones that honor our relationship. I continue to attend opening weekends of Disney films, as I did last weekend at A Wrinkle in Time. I go by myself because I cannot imagine being with anyone else and it is emotional for me. When I am by myself I can feel Ben with me. I know that some people think that’s strange. I have not yet returned to Walt Disney World. Although I had been there before I met Ben, it was a most special place for both of us and, after his ALS diagnosis, it was the one place where he transcended the disease and felt most free. Our favorite time of year to go was around my birthday, which coincided with the Halloween celebrations. I don’t know if I will ever be able to resume that tradition without Ben.
I have written about how I have made it a ritual to put Ben’s favorite Christmas tree ornaments on the part of the tree where he liked them so he could easily see them all day from his desk. It feels right. I continue to look over at his desk chair, which I have also kept despite its shabby condition, and I feel comforted to see his computer still in its place of honor. There are so many memories are there. I have also written about how when Ben’s computer crashed, I hired someone to restore it so that I could keep playing his music playlists from his computer (click for post). One of the reasons that Ben’s computer and its music library is so important to me is because music was so essential to Ben’s being. When we first started dating, he often gave me lyrics to Beatles love songs. On my birthday and on our anniversary, left special videos and music clips for me to play. Now, on his birthday, I play for him the Beatles “Birthday.” It makes me cry but I look forward to what I have made a ritual and in my heart I know that wherever he is, he hears it. I’m ok with tears. Sometimes the emotions have to come out, and, with them, come beautiful memories.
One of Ben’s notes with instructions for his musical anniversary surprise for me. As you can see, he always knew that Disney took priority!
I also created a special music playlist called “Ben.” This playlist contains songs that were special to us for different reasons, both happy and sad. One song, “In My Life,” was his favorite Beatles song, and a song that was played for him by a kind and talented musician on the day he died. “It’s a Small World,” because we loved that attraction and he always teased me that it was my ringtone and ringback tone on my phone. “The House on Pooh Corner,” because Ben’s doctor, in an effort to provide some level of comfort and cheer on the day Ben separated from the vent, found the video and played it on his phone for us to watch, and that touched my heart. And, there are a few other important songs. It is my routine and ritual to listen to this playlist every single morning on my way to work. No matter what happens, Ben is with me as I start my day. It gives me a sense of comfort and security and it gets me moving despite how I’m feeling.
I guess rituals and routines are sometimes interchangeable for me. But, it gives me a sense of grounding to know that I will be watching Monsters Inc, Toy Story (1,2, and 3) and The Incredibleson Ben’s birthday or even the sad milestones of his going into the hospital and his passing. They are simple and sentimental ways of honoring the unique and special parts of our relationship.
I was never like Rabbit. I am a horrible housekeeper, and I could never keep things in great order, though I did keep our lives completely organized around Ben’s care and well-being. I like to think that Rabbit would have appreciated that I am, however, insistent upon my routines and rituals when it comes to honoring Ben and the things that were unique to our relationship. No matter where life takes me, these routines and rituals give me a sense of security in the present and the knowledge that I bring the love from the past along as I move forward.
Halloween 2012 at Walt Disney World. We never met Rabbit (there was probably too much frolicking), but had fun with his 100 Acre Woods buddies.
Last weekend, in keeping with the tradition that Ben and I had for seeing Disney films on their opening weekend, I saw A Wrinkle in Time. It is difficult for this Disney fanatic to admit that I was disappointed, but I was able to see beyond the film’s reliance on special effects to be touched by powerful messages that resonated with me. The film prompted me to go home and reread Madeleine L’Engle’s book on which the film is based, and together, the book and film have been a moving experience.
In Disney’s film, A Wrinkle in Time siblings Meg and Charles Wallace are on a quest to find their father, who has disappeared as a result of a scientific experiment to cross time and space to find other planets. They are led on this quest by the guiding spirits of Mrs. Whatsit, Mrs. Who and Mrs. Which. It is a fanciful story, but one that touches on love, hope, faith, and stretching your mind to see possibilities. Not surprisingly, I saw many parallels to the role of caregivers.
The spirits tell young Meg that they are in search of “warriors” who will “serve the good and light in the universe.” I could not help but think that this is a fitting description of caregivers. We are there to help our carees with their physical and emotional needs, to advocate for them, and to make life as positive as it can possibly be. My support of Ben encompassed all that would enhance his quality of life and support his wishes. That’s what a caregiver does. It took me a long time to understand why people called me brave when they described my experience with Ben. But, as caregivers, indeed, we are brave. Although ordinarily fairly shy, I was a fierce warrior when it came to advocating for Ben. I could not see it at the time, but now, I look back at that experience with pride and love.
As fierce as I could be, and as joyful as my demeanor usually was, so that I could almost always make Ben laugh, Mrs. Which hit the nail on the head when she said, “The only thing faster than light is the darkness.” In A Wrinkle in Time, the “It” was the darkness, the negativity, the hate. For us, the “It” was ALS. As much as we wanted to be hopeful and I wanted to be a cheerleader, after any kind of scary incident, we would quickly fold under the darkness of ALS as it took away Ben’s ability to walk, to use his hands, to chew and swallow, to speak and to breathe. We had good, loving and silly moments, but each struggle and crisis cast the shadow of an inescapable darkness. We fought to keep those positive moments and attitudes, but it was a constant battle.
As Meg, Charles Wallace and their friend Calvin embark on the journey to find their father, Mrs. Witch cautions them that, “You’re going to be tested every step of the way. Have faith in who you are.” This is a caution for every caregiver. The tests never end. I was tested with every issue that arose along the way as Ben’s ALS progressed. As life got more difficult for Ben- and his tests were never-ending and impossible to fathom- it became more difficult for me, too. My physical strength was first tested when Ben began to fall. Lifting him was quite a challenge and did eventually sometimes require my emotional strength in insisting to Ben that I had to call 911 for assistance. Transferring Ben from his chair also tested my physical and emotional strength. I had to overcome my generally squeamish nature to tend to Ben’s daily living needs. It was exhausting and devastating to see him struggle with the physical challenges and the way that they made him feel, to juggle a full-time job with full-time caregiving, to deal with the fact that he was going to die and to help him deal with that fact. Navigating these issues constantly tested our patience, as we experimented with accommodations, mishaps, disappointments and frustrations. Faith in each other, maybe even more than in ourselves, allowed us to find the strength within ourselves to pass all the other tests. At times, however, we kept Finding Nemo‘s Dory’s mindset to “Just keep swimming.”
Meg’s mom tells her, “My love is always there, even if you can’t see it.” Ben and I had to have that faith, and to be perfectly honest, it was not always easy. We lost patience with each other, hurt each other’s feelings, and went through phases of hopelessness and helplessness. We could see past our disconnects, impatience and frustrations because even when it was not apparent, the love we had for each other was always there without a doubt.
Meg was able to reunite with her dad and bring her back to Earth. Of course, I could not “wrinkle time” and bring Ben back to this dimension. I’ve written so many times that Ben is with me in my heart. I know without question that although he has gone, his love is always here. Even though it does not always compensate for his physical presence, I feel him in so many ways. This film let me realize and embrace the unexpected gifts that Ben left with me. Through this experience, I gained a certain confidence, and I believe that Ben was happy to see that because he never lost confidence in me. Now, I have begun to acknowledge the quiet warrior within myself who, despite a bumpy road, is forging a new path, guided by the spirits of Ben, as well as of my mom, dad and grandma.
The film A Wrinkle in Time did remind me of those beautiful and important messages that I hope will support, comfort and motivate other caregivers. However, my suggestion to you, which may be particularly helpful if you cannot get out to a movie theater, is to read the book while you wait for the film to become available on DVD/Blu-Ray/Digital.
On the heels of January 13 being the anniversary of my mom leaving this earth, February was filled with anniversaries- my dad’s birthday and the day he died, Ben’s birthday, the date of my grandma’s death, and two and a half years since Ben died. I didn’t mark the 6-month date in a blog post, but I was keenly aware of it. March began with my Grandma’s birthday. All of these events made all the more resonant Widow Tweed’s words to Tod in The Fox and the Hound: “Goodbye may seem forever, farewell is like the end, but in my heart is a memory and there you’ll always be.”
Each year, when I am hit with this block of dates, I relive all over again the losses and how they happened- the hospitals, the VA, the hospices, the crises, the goodbyes, the sadness and fear and even anger. I lament the many ways that life changed with each of these losses, and I think about how I have lost the family that was my bedrock. At a time when I have begun to feel more joy and comfort in memories, and I am gaining perspective on my relationships and my experience with grief, this block of time definitely feels like a setback.
I think back to when my mom died of a sudden massive heart attack, and it completely uprooted my world. My mom and I spoke many times each day, spent so much time together, and when she died I simply did not know how I would go on. For quite some time, every morning I awoke, sat on the sofa trying to decide how I would spend each day, until evening fell, and I could just get back into bed. When I did go outside, something would invariably remind me of my mom and I would break into tears. It was unbearable. Family events without my mom were traumatic. During that time, I was completing my Master’s Degree and I was hired to work with children in a hospital. I relished that time because I had to put my own grief aside for a few hours to focus on the needs of the children, which was rewarding and purposeful. Other than that, the only thing present for me was her absence.
With each subsequent loss, I went through a similar process, though, sadly, I knew more of what to expect. With Ben, the levels of grief were particularly layered and they began during his battle with ALS- loss of the life as we knew it, shifts in our relationship, and, ultimately, supporting his decision to go off life support and preparing to be there for and with him as he left this world on his terms. Experience did not ease the pain of my losses by any means, but maybe it helped me to understand it and adjust more quickly to coexisting with the pain of grief.
Although I did question it when I heard it, I now believe that Cinderella’s Fairy Godmother was right that “Time passed and pain turned to memory” (live action Disney Cinderella, 2015. Click here for that post). I do remember those awful days of grief. At this time of year, in particular, but also at other times, anticipated or unexpected, I still get hit by waves of grief, sadness and missing everyone. But, I also have vivid, beautiful memories of these beloved people. I look at myself and know that they have all helped to shape the person I am today. The memories are loving, and also truthful, and they have offered me a better understanding of myself and those relationships. They have led me to want to offer comfort and support to other caregivers and people in grief and to want to find and keep love in my life.
I’ve come to realize that although I said goodbye, our relationships did not end. Now, I carry our memories in my heart, where they will always be to guide and inspire me and to surround me with love. It is not the same as having them here, but it is a lot.
By the way, The Fox and the Hound is a truly touching story that I highly recommend. It has sweet messages about friendship, loyalty and acceptance.
Today, February 21, is Ben’s birthday. I woke up feeling so down that I didn’t want to get out of bed. This is the third birthday without him, so I asked myself how many of his birthdays I am going to feel like this. The truth is that I have gotten used to the waves of sadness and loneliness. I didn’t know how I would feel today but I go with the flow of my emotions. I don’t convince myself that I have to be miserable, I don’t punish myself, and I don’t anticipate anything other than that I don’t know how I am going to feel and that I will be okay with whatever mood hits. The sadness and loneliness don’t paralyze me the way they did, but the bursts of tears remain.
I miss Ben and I think that’s okay. I miss making a fuss on his birthday. When he was homebound, I decorated our apartment after I put him to bed so he would have a fun surprise in the morning. He knew I was decorating but never knew exactly what he would find, and that delighted him.
In an effort to continue to make a fuss over Ben, I made a plan for today to honor him and our relationship. Making a plan was a way to prepare for the day, too. Since next week is the Jewish holiday, Purim, I decided to bake humentashen, the triangle-shaped, fruit-filled cookies. I knew Ben would like that. He loved them and was very good at shaping the cookies! Ben actually enjoyed a lot of Jewish holidays and traditions- often more than I did! He got a kick out of helping me, particularly because I used to tell him that he was better at it than my mom, who could not make that shape no matter how hard she tried. It always made me laugh to see my big, Puerto Rican man delicately making the humentashen! Grandma would have been proud of him!
Ben and Grandma would be proud of this batch of humentashen.
I am also in the midst of a Disney movie marathon of Ben’s favorites- Monsters, Inc., Mulan, Toy Story (1,2,3) and The Incredibles. It’s a quiet day filled with lots of memories.
I also looked at the video that I made last year on his birthday, which I’ve placed here once again. There are photos of his birthdays and other happy occasions, and, of course, some Walt Disney World photos. Some were taken when he had ALS and some in the pre-ALS days. The love was always there, so I embrace all of the memories. I guess it will always be jarring but sweet to hear The Beatles’, “Happy Birthday.” Ben woke me up with that song every year on my birthday. Now, I am playing it for him. I find it comforting to revisit beautiful memories. That doesn’t mean that it doesn’t come with tears, but tears are okay. So are smiles.
I want anyone reading this to know that, at least in my opinion, there is no “right” way to deal with events like this. If I had felt like I did not want to do anything special for Ben’s birthday, and just share a quiet thought of him, that would have been fine, too. I feel no compulsion to defend myself. That, in itself, feels like progress! Although I made this plan for today, I didn’t know if it would be right for me until I was in the moment. It began shakily, but I did get myself out of bed to accomplish my goals. Thankfully, though having a “Ben day” alone with my memories and baking did not make me happy, it still felt right, and that gave me a feeling of contentment. And, Ben (and Grandma) would be thrilled that the humentashen came out very well!
As I wrote last year, there is no candle on a cake now, but always wishes that he is comfortable, and running, singing and eating to his heart’s delight. And, wishes for a cure for ALS, because wishes do come true. As Cinderella’s Fairy Godmother says, “even miracles take a little time.”
2011- A visit to the Wishing Well at Cinderella’s Castle to wish for a cure for ALS.
When Ben proposed to me at Walt Disney World, he asked me to be His Minnie. So, on his birthday, I say