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.
2011- It’s a Small World allows a wheelchair to board the boat, and since that was so easy (and, ok, there are not long lines) we road it frequently! YAY!
For musical accompaniment while you read this post, click below to hear the song!
It’s a Small World Lyrics and music by Richard M. and Robert B. Sherman
It’s a world of laughter, A world of tears.
It’s a world of hopes,
And a world of fears.
There’s so much that we share,
That it’s time we’re aware,
It’s a small world after all.
Chorus: It’s a small world after all. It’s a small world after all. It’s a small world after all. It’s a small, small world.
There is just one moon, And one golden sun. And a smile means, Friendship to every one. Though the mountains divide, And the oceans are wide, It’s a small world after all.
Chorus: It’s a small world after all. It’s a small world after all. It’s a small world after all. It’s a small, small world
It’s a Small World is one of my favorite songs, and the ring-tone and ring-back tone on my phone, either to the delight or dismay of people who call me. It is also my favorite attraction at Walt Disney World, and was one of Ben’s, too, and he loved that after his diagnosis, he could easily ride right onto the boat with his scooter and electric wheelchair. I do not like to get political in this blog, but I can’t help but think about how timely this song is and wish that we had more politicians who promoted this kind of unity. But, this is a blog about caregiving. As a former caregiver, and now a participant in support groups for caregivers and family members of people with ALS, I see so much judgment and the hurt it causes- from caregivers, carees, family, friends and others. Although we all wish we could dismiss the opinions of others, nobody likes to feel judged, particularly when we are already vulnerable and those judgments make us feel inept. It’s so important to remember, and sometimes to look for, the things that we share, even if we take action in different ways. Also, while we debate the efforts that we make, a simple smile is a universal act of kindness that can make a tremendous difference in our lives.
Yesterday, I was reminded of how important it is to have compassion and to be considerate, rather than judgmental, of what people are experiencing. We never know exactly what is going on in someone else’s life or how much we might have in common with a stranger.
I was waiting outside a movie theater to meet a friend, when a woman came up to me to ask for directions. I directed her back down to where she was walking from and she got very upset, saying that she had just been told to come up the block from that direction. I pointed to the street signs- Manhattan is a grid in most parts- and showed her the precise street she was looking for, which was literally one block away. She showed me the exact address she needed to find, and I confirmed my directions and told her what the cross streets would be, hoping to comfort her by explaining that I lived just below it in the same range of numbers. She was inconsolable. She told me that she was going to her friend’s apartment and was trying to call her, but her friend would only text and would not answer her phone. The woman appeared to be a New Yorker, but I could see that for whatever reason, she was distraught and seemed almost disoriented. I offered to walk her to the block and that seemed to appease her. When we got to the corner, she got upset again, saying that it was the block that she came from. She tried to call her friend again and got no answer. I didn’t understand why she didn’t text her friend but did not ask questions. Since she was so upset, I offered to walk up the block and see if I could spot the building. I quickly found the building, walked back to the corner where she waited for me, and escorted her to the building.
As we walked towards the building, she apologized for walking so slowly, saying that she had a lot of health issues. I smiled and said it was no problem and told her that my husband had ALS and I walked slowly with her, remembering how I made those accommodations for Ben, then walked beside his scooter, then his electric wheelchair, sometimes having to help him steer that vehicle. She confided that she had Parkinson’s and I applauded how well she was managing despite her worry. We smiled and wished each other a good day and she calmly went into the building.
I walked back to the theater thinking about how at first glance, she just seemed unnecessarily frantic and somewhat unreasonable. Once I understood the context of her panic, I saw that she was probably terribly concerned about walking back and forth, and maybe uncomfortable, tired, and unsteady. But, it really didn’t matter if I understood. What mattered is that I could easily lend a hand and relieve a stranger’s stress. I then wondered how her friend could be so thoughtless to insist on her texting when, with Parkinson’s, she may have found that a difficult task, especially in the severely cold weather. It seemed at the very least, terribly inconsiderate. Perhaps her friend knew little about her illness. In this case, it would be appropriate, and responsible, to ask how best to accommodate someone. The trick is to do it without making the person feel like a burden or to call great attention to their needs. In the case of someone who is reluctant, or too proud, to ask for or accept help, it can be useful to arrange to be conveniently nearby.
I have written quite a bit, even recently, about judgments that people made about Ben based on his speech or being in a scooter as opposed to an electric wheelchair (he did eventually need one). As caregivers, we know our carees, and, even at that, sometimes we have to listen to them even though we have our own opinions of how to handle various situations. I was fortunate that Ben never lost his ability to communicate, even though it became more difficult to understand him. He knew himself and his body very well. That’s not always the case, and when it isn’t there is frustration on the part of everyone involved. But, a smile and acknowledgment that we all matter can do wonders to help relieve stress and foster communication and cooperation.
I believe that we know that Eeyore is right that, “A little consideration, a little thought for others, makes all the difference.” Ben and my dad always appreciated expressions of consideration and kindness. Likewise, it meant the world to me to know that they appreciated my efforts on their behalf. Sometimes it could only be expressed with a smile and a squeeze of the hand, but that spoke volumes, especially after bouts of impatience and disagreement and, believe me, those did happen!
We all have our routines, our world views, our opinions. We run across so many strangers in our lives. We have no idea what’s going on in their lives. Even when we do, we are not part of the dynamics of other people’s relationships. People who knew me thought that I should handle things differently and got frustrated and concerned about what they thought was my inaction but was sometimes an emotional paralysis. I’m sure that there were occasions when I was frantic and people thought I was unnecessarily high strung. Strangers didn’t know that I was the caregiver of a man with ALS at the same time that I was helping my dad who had cancer. They did not know that I was in tears as I rushed past them because I was scrambling to make a train to avert a crisis. Undoubtedly, some of these strangers had their own stressful situations. In those moments when there is the inclination to judge and offer an uninformed opinion, or lose patience, please remember what Eeyore said, and also that “There’s so much that we share that it’s time we’re aware, it’s a small world after all.”
To all who now cannot get that tune out of their heads, I apologize- well, sort of. After all, it is my favorite song! These are a couple of favorite pictures from the attraction.
Love these girls!
We never passed these girls without shouting “ooo la la” along with them!
Some of you may feel like this right now. The sign was on the attraction one year but we never saw it again.
The beginning of a new year should be a positive time of looking ahead, setting goals, and optimism. For me, I kind of dread January and February because of the anniversaries- my mom died in January, my dad’s birthday and death occurred two days apart in February, and Ben’s birthday was in February. All I can do is sigh. I guess the melancholy that looms conjures for me of the uglier and sadder caregiving memories, and strengthens the waves of grief.
Last year, I was thrown when Ben’s table collapsed during the holidays and I had to throw it out (click here to read about the things that mattered). I still miss that ugly table because it held so many beautiful memories of Ben. Then, I was unnerved when I added new ornaments from London to the tree because everything about the tree represented Ben and me. This year, I was prepared for the conflicting emotions as I decorated the tree. I still put the Ben’s favorite ornaments exactly where he liked them, so he could see them from his chair at his table.
When I plugged in the pre-lit tree I saw that the lights didn’t work in several places. Another heartbreak. Ben got that sparkly pink Christmas tree for me when having a real one became too complicated given our space. I admit that I get sentimentally attached to a lot of things, as evidenced by my home filled with mementos from loved ones and special times. Therefore, it is hard for me to part with things that Ben gave me, because represent parts of our relationship. I kept the tree up for the holiday season, feeling that the lack of brightness reflected my mood, and I procrastinated about taking it down. I knew that dismantling the tree meant throwing it away.
Yesterday was the day I had to take the tree out to the curb. As I looked at it, the sadness I felt was not just about letting go of the tree, but of how small and insignificant the tree looked on the tree. Nobody passing this discarded tree would know what that tree represented, how it brought joy during holidays that were not joyful. They would not know that it was the last tree Ben ever saw and how it was decorated according to his wishes and delights.
Although I now feel particularly vulnerable, and I was thrown by the loss of our silly, sparkly pink tree, I also realize that Aladdin’s Iago was right when he said, “You’ll be surprised the things you can live through.” That’s a good life lesson and an important reminder. Although losing the tree doesn’t come close to the tragic and frightening events that occurred as I watched my dad and Ben succumb to their illnesses, it conjured many of those bad memories. The tree was yet another symbolic loss that amplified that loneliness and makes me wonder when and if all of this will end. I do know that somehow, I keep going.
Throughout my life, I have generally thought of myself as a crybaby, very squeamish, and not physically or emotionally strong. I had a hard time comprehending why people told me that I was brave, when I was not the one facing death, though I have come to understand what was perceived as my bravery. I will always believe that caregiving was the most important and loving thing I have ever done, but it was also intensely difficult, devastating and exhausting. This is probably why I relate to Christopher Robin’s quote, “You are braver than you believe, stronger than you feel and smarter than you think.”
During caregiving for my dad and Ben and then, in grief, despite the times that I felt so close breaking down and so incapable of meeting the challenges, I must remind myself that lived through it. In fact, I did more than live through it because Ben and my dad knew that I did my best for them, advocating, caring for and loving them. And, although there are still unexpected triggers that cause me to stumble in grief, I know that Iago was right and I’ll continue to get through the waves of sadness and floundering. After all, I don’t want the worst times in my experiences to be what define me or the deeply loving relationships I had with these people whom I love and miss so much. It’s taken time, but I have come to realize that integral to getting through these times is my finding ways to honor my Ben and my mom and dad every day- even through my blogging- and keeping them in my hearts, letting them guide me as I reshape my life, embrace the present, and look to the future.
Our last family Christmas/Chanukah, 2014 with our sparkly pink tree. We got matching Mickey and Friends pajamas- even Disney! (She liked the pajamas, but not the picture-taking!)
Disney ornaments, one of our photo ornaments, one from Liberty and one from Harrod’s in London. There’s also a Schnauzer I got with Ben- I grew up with Schnauzers.