The Many Adventures of Winnie The Pooh Walt Disney Productions
Friday, January 18 was Winnie the Pooh Day, and it was ironic, because on Thursday, I had an “Oh, Bother” moment.
I have written a lot about grief and how incidents unexpectedly trigger setbacks. Last week, after four days of horrible dizzy spells, I decided to go to the doctor. It takes a lot for me to agree to go to the doctor. I am afraid of doctors, afraid of pain, afraid of the anticipation of anything and everything related to the visit, especially if blood tests are involved.
As I described my symptoms, the doctor said it was an inner ear issue, benign positional vertigo. He gave me some tests of my coordination. They were the same things that Ben’s doctor did when he had his ALS visits. I had not thought of those in a long time. Suddenly, I was back in those days of watching ALS take away Ben’s abilities. I found myself lamenting the ensuing setback, but I tried to intellectualize the process, recognizing the trigger and foreseeing the bad feelings. I was back in a funk. “Oh, bother!”
Since Thursday, I have not been able to shake the memories of those ALS clinic appointments. Ben liked going to the appointments because the ALS chapter sent an ambulette for him and he liked getting out of the apartment, but he began to almost resent the appointments because he felt like the team got their data but he got nothing because they really could not help him. ALS has no cure. During those appointments, I watched him do the exercises that I was asked to do. I did them with ease, but with Ben, his abilities kept diminishing. He was always disappointed, and I was heartbroken to see him look so defeated and to know that things were getting worse. Reliving those days and already literally feeling shaky, the grief took away my emotional steadiness. “Oh, bother.”
I know these feelings will subside and I know that at some point, some other trigger will set me back. Like the vertigo, there will be episodes where, in the midst of a normal day, I will feel lousy and all of my memories and emotions will spin uncontrollably and uncomfortably, but I will also find my footing. It occurs to me that grief is not curable but it has become more manageable. I realize that it is predictably unpredictable. “Oh, bother.”
Crystal Pavilion at Walt Disney World, May 2010. We took this trip right after Ben received his ALS diagnosis.
Sometimes you just need some Bibbidi Bobbidi Boo. This is one of those times for Disney and me.
Cinderella (1950) Walt Disney Productions
In my last post I was worried about Disney as I faced 2019. My worries have escalated. I took her to the veterinarian during the week. The vet believes that she has cancer that is affecting her spine and that’s why her legs are weakening. There is nothing that can be done for her because medications would damage her already failing kidneys and cause her diabetes to go out of control. Her veterinarian, Dr. Napolitano, is wonderful, and she described Disney as an impressive girl- at 17 years old and with so much wrong with that little body, she is a fighter. But, she’s still my baby. Disney was given an injection, and I was given a prescription, to help with the inflammation that might ease her walking. Now, it’s a matter of time.
Visiting hours for Disney during one of her hospital stays.
I see a very slight improvement in her walking, and she is persistent. She climbs onto the sofa and the bed and likes to be near me. Her appetite is good and she was very excited to eat turkey, probably her very favorite treat. She’s not quite herself, but she is not as withdrawn as she had been, so maybe the medication is helping. Dr. Napolitano says these are good signs. I am spending a lot of time giving Disney attention and love, but the sadness looms.
Watching Disney, doting on her and worrying about her certainly has me pretty stressed. I find that I am not only dealing with the impending loss of my sweet Disney, but I am also reliving the terrible parts of caregiving and anticipatory grief that I experienced during Ben’s battle with ALS. On Friday, I spent the day at work preoccupied with how Disney was doing at home- if she had fallen, if she was in pain, if she was scared to be by herself if she didn’t feel well. That brought back memories of the years of being at school with my phone in hand, hoping that my phone would not ring with an alert that my dad or Ben were having a crisis. Yesterday, I did go to the theater with a friend, but I was distracted by thoughts of how Disney was doing at home. I felt the same guilt about going out that I felt when I arranged to go out while Ben was ill. Once again, there is no relaxation at home. The pain of those memories, which has dulled but has not been forgotten, has once again become vivid.
Also, I feel like I have once again stepped back to being Abby who is caring for an ill loved one. When I started working at my new high school, no one, except for a few teachers who knew me prior to this position, knew about Ben and my dad. I could shed my reputation as the caregiver or the griever. But, here I am again. I do appreciate the concern shown by my friends, I just don’t want to be “that” Abby again.
Timon from the The Lion King was right when he told Simba, “Sometimes bad things happen and there’s nothing you can do about it.” I know the realities. Disney is seventeen years old. She’s been ill for quite some time. She was diagnosed with diabetes about a week after Ben died. Since then, it’s been one medical problem after the next. Despite this, she’s had a really good life and she’s brought me so much happiness and comfort. She is simply a very sweet cat – beautiful inside and out- without any of the negative qualities attributed to cats. She’s kind of like a needy toddler who always needs her Mommy. She was always there for cuddling when things were awful with my dad and Ben and when I looked in her big green eyes I knew she understood what was in my heart. When Ben was in the hospital for those six weeks, I was so grateful to return home to her. Importantly, she is, actually, my one remaining connection to Ben. Disney was here as Ben’s ALS progressed. She watched intently as his walking became unsteady. She went to him when he could no longer go to her. She was even in the hospital to say good bye and watch over him. And, here I am, watching over Disney in the same way, trying unsuccessfully to simultaneously ignore and accept what I know is happening.
Disney watched Ben throughout their visit in the hospice, even when he slept, as pictured here.
I have pushed through the bad days as I navigated the Inside Out of emotions in caregiving and grief (click here for prior post) and I am constantly reminded and reassured that I can step back into life. Writing these posts helps me to sort through issues as they arise. Maybe that’s why I am so shaken by the way this event has thrown me so far back into the depths of grief.
Ben made the choice of how he would live and die with ALS. I will have to make the choice for Disney. I want to be sure that she is comfortable and that I am not being selfish and keeping her here when I should let her go. Maybe I am too obsessively following her, lifting her so she does not have to climb, keeping a close eye on her and listening to every sound, talking to and cuddling her. I wish I had a fairy godmother who could bring us some Bibbidi Bobbidi Boo, but maybe Disney and I are each other’s fairy godmothers, and even though we don’t have actual magic, we are always there for each other with all the love in the world.
Disney and I in our recent holiday photo. She was very patient about my enthusiasm for the Santa hat.
Another New Year’s Eve. It was never a big deal for me. I’m not a party girl and Ben was not into partying. I enjoyed finding a new recipe and making a nice dinner and then we would settle in and watch a movie.
Everything changed when Ben was diagnosed with ALS. New Year’s Eve became depressing for us. I would try to hide my tears at midnight, and Ben couldn’t muster enthusiasm. For us, we didn’t look forward to a new year and what it might bring. We wondered if it would be our last new year’s eve together.
There was no way to know that our last New Year’s Eve would be December, 31, 2014. But, how wonderful it is that I can look back now and say that it was a very fun night that reminded us of the romantic, fun, and nutty times that defined our relationship. I ordered matching Mickey Mouse and Friends pajamas for us and even for Disney (from Pajamagram.com) Ben always loved the fireworks at Walt Disney World, and I found a toy that supposedly simulated fireworks, with sound effects and LED light “fireworks” that were activated by a remote control. We played the soundtrack to the “Wishes” Magic Kingdom fireworks show and Ben chose the sequence for our fireworks show while we had our photos scroll on his computer. It was pretty hilarious to pretend we were at the Magic Kingdom as we watched these pretty unconvincing fireworks splash on the wall. There is a brief video below. Don’t think it’s the video quality or the color calibration on your monitor, the fireworks really were that bad! It felt almost magical to laugh and enjoy the evening. And, it touches my heart still, that Ben woke up the next morning smiling and saying that he had so much fun. That silly celebration is now part of my treasure trove of beautiful memories of moments sprinkled with pixie dust. It’s a good lesson to let, or make, good times happen and to cherish happiness and smiles.
Now, New Year’s Eve is a time to reflect. The first year after Ben passed away, I busied myself making a tribute card and featuring “Auld Lang Syne.” It was a positive way to keep Ben with me and keep him in the hearts and minds of others, give myself a purpose, and focus on happy memories as I sorted through our many photos to pick the perfect ones for the card. The second year, I struggled with how to make a card that did not include Ben. It was truly heartbreaking and I didn’t know what felt appropriate. My solution was to include photos that he loved. Last year, I simply had little holiday spirit. I took a picture of Disney but did not even print any out for mailing. I just wasn’t up for it and didn’t want to put on a happy face.
Holiday Card 2015 A Loving Tribute to Ben
This year has been another setback. Disney is not doing very well. I find myself in the same position I was with Ben- wondering if this is our last New Year’s Eve. I did make a card this year but it was bittersweet because I found myself making the card because I feel like it may very well be our last card. It’s breaking my heart. While some people might find it outrageous that I could put a cat in the same category as Ben, I assure you that Ben would understand, as any animal lover would, and as Ben understood how my family was about our furbabies.
I’m angry, sad, frustrated. I have largely gotten to a good place in my life, balancing past and present and looking to the future with cautious optimism. Watching Disney struggle as her legs weaken and administering all her medications makes me so sad. I promised myself and her that I will not let her be miserable. We aren’t there yet, but I am worried about her. I am trying to balance optimism with realism but I already recognize the anticipation of grief and I’m trying to replace it with love in the present for this little girl who has been through so much with me.
[bctt tweet=”I am trying to balance optimism with realism but I already recognize the anticipation of grief and I’m trying to replace it with love in the present.”]
So, I’m sitting here tonight not looking forward to the stroke of midnight. But, I will wish Disney a happy new year, hug her tight, and make our time as meaningful and good as possible. I will spoil her even more, if that’s even possible! I will try to remind myself of the good New Year’s Eve that Ben and I shared and of how much I have grown as I’ve come through the worst part of grief. And, I will wish, in my Disney way, that 2019 brings some kind of peace.
I hope that everyone will conjure good memories and good thoughts, and create the most meaningful, if not happy, new year’s eve. I wish you and yours peace in 2019.
Our last family Christmas/Chanukah, 2014. We got matching Mickey and Friends pajamas- even Disney! (She liked the pajamas, but not the picture-taking!)
Ben playing the drums at Walt Disney World’s Animal Kingdom. He loved listening to and making music.
Sometimes, it feels like pixie dust is sprinkling down to let me know that Ben is watching over me to give me hope and inspiration for engaging in life. Maybe you don’t believe in that, but my belief in the magic lets me see and feel it and know in my heart that, at least for me, it’s true. In my last post about Snow White and the Seven Dwarfs, I said that I am my own Doc (click here for that post). Last night, as I assessed my emotional growth, I had yet another reassuring reminder that Ben stays with me as I immerse myself in life.
Last night, I went to see my third Paul Winter Winter Solstice Celebration at the Cathedral of St. John the Divine in Manhattan. It has become a tradition since Ben passed away. To give a little background: I knew of Paul Winter from many years ago, when my uncle took me to hear a concert. Ben was intrigued, and he liked the Paul Winter CDs I played. Ben loved music and he was a talented, self-taught musician and music orchestrator. He especially loved the soprano saxophone, which is Paul Winter’s instrument. We just never seemed to make it to the annual Winter Solstice concert. After he was diagnosed with ALS, it was too difficult to get there. I would never have gone without him.
After Ben died, it took a lot of adjusting, with a lot of emotional stress, to get used to doing things that I could not do while Ben was ill. I still struggle with some guilt- that Ben is not here to enjoy things, that I should not enjoy life if he cannot- but I have been steadily pushing through that to find the balance of continuing to live while I keep him with me in my heart. Last night, I realized that this concert is a kind of pixie dust for me- I look forward to it because it reminds me that Ben is with me and that, although it’s not the same without him, the concert envelopes me in thoughts of Ben and what he loved, and it brings me a unique comfort and assures me that it is okay to keep going and shape a new and vibrant life.
The winter solstice celebration is more than a concert- it includes the participation of the Forces of Nature Dance Theater, vocals by Theresa Thomason and, of course, the brilliant consort musicians. The Cathedral of St. John the Divine is a magnificent building, and one of the five largest churches in the world. The acoustics and the magnificence of the building enhance the whole experience. The production elements were visually stunning, and my friend and I were mesmerized. I listen to music differently and more intently because of Ben’s love and understanding of it and that’s one reason the concert is a profound experience for me.
The Cathedral of St. John the Divine, NYC- Paul Winter ‘s Winter Solstice Celebration
As I sat at the concert last night, I thought about the first concert I attended, back in 2016. At that time, I did not know that there would be a special guest, Gary Brooker, of Procol Harum and A Whiter Shade of Pale fame. He also has connections to the Beatles and to Sir George Martin, producer of most of the Beatles’ recordings, as does Paul Winter. Ben was a huge Beatles fan. Gary Brooker talked about when John Lennon was shot, and as a tribute, he sang In My Life. This was very emotional for me because it was Ben’s favorite Beatles song, and a song that was even played for him on the day he left this earth. It was unexpected and shook me to tears, anguished that Ben should have been at the concert to hear it in this setting. At the same time, there was also a deep feeling of the universe at work. It seemed meant to be that after all of the Paul Winter concerts that I missed, that I could finally make it to this particular concert on this particular evening, thinking so much of Ben because of the music, to hear this song and see Gary Brooker, whom Ben would have been so happy to see and hear performing this song with Paul Winter on the soprano sax. Somehow, I just knew that Ben was with me and was part of it. For the first time, this kind experience did not devastate me and overwhelm me with guilt and a huge setback in grief. Instead, it comforted me because it conjured Ben and what he loved. The fact that there was a Beatles connection and Ben’s favorite song was performed was an unexpected but such a special, almost spiritual surprise.
Lyrics of “In My Life” on the card I designed to send to people for their expressions of sympathy.
Maybe it was not mystical, and simply a fortunate, lovely coincidence. Of course, that’s possible. But, feeling that the universe was working for Ben and me gave me tremendous comfort and even joy, and symbolized a growth in my own spirit and a shift in my grief.
I realized last night that I have come to look forward to this traditional event because I find symbols of love and hope and feel great connectedness with Ben and life. It has not been a quick and easy process. It is ongoing and unpredictable. But, moments like last night are positive and empowering, and, also filled with messages of love and encouragement. That feels like pixie dust to me.
“All you need is faith, trust and pixie dust!”
I believe that Peter Pan was right when he said, “All you need is faith, trust and pixie dust!”
On this day, December 21, 1937, Walt Disney’s first full-length feature, Snow White and the Seven Dwarfs premiered at the Carthay Circle Theatre in Los Angeles. I wish I could say that I navigated caregiving and grief like Snow White, the graceful princess who happily sang her way through taking care of the seven dwarfs to a happy ending. I do believe that at times I was that person to Ben and my dad. I was very much their cheerleader and the person who tried to keep them entertained. I was also the nurturing person who managed the details of their care, the way that Snow White kept her household together, except that I seriously lack her stellar housekeeping skills! Alas, I have always related more to the dwarfs!
One of my first blog posts addressed how, as a caregiver, I often felt like all seven of the dwarfs within a single day. In the earlier stages of grief, I also had drastic ups and downs and could feel like any and all of the dwarfs within moments. Now, more than three years after losing Ben to ALS and almost five years after losing my dad, I still feel a kinship with those seven cuties. Here’s how.
Sleepy
Walt Disney World Halloween Electrical Parade
During my caregiving days, as Ben’s ALS progressed, he often required assistance throughout the night. I am a NYC public school teacher, and there were days that I could barely keep my eyes open at work, and a classroom is a place where you need to be on your toes. My dad also called many times in the middle of the night if he didn’t feel well, and I would travel about 45 minutes either to his home or to meet him at the Emergency Room late at night or early in the morning.
In the early phases of grief, there were many sleepless nights for so many reasons- recalling good and bad memories, anxiously contemplating the future and feeling the loneliness and the loss.
Now, I continue to have sleepless nights, though less consistently. I worry about being alone for the rest of my life, feel anxiety about dating, and sometimes I simply get caught up in memories and my mind gets the best of me. It’s also exhausting to deal with the ups and downs of emotions while adjusting to a new lifestyle, trying not to revert to staying by myself and becoming too comfortable alone.
Dopey
Not sure who the real Dopey is!
When juggling Ben’s needs, I did not necessarily know what to do or how to help him, and, indeed, I did feel Dopey. The medical jargon was also confusing to me at times. Simple things just seemed out of reach for me because I became so overwhelmed or was just so tired. I broke things, dropped things, locked myself out of the apartment, and a bevy of other Dopey things.
For the first couple of years after I lost Ben to ALS, I found it very difficult to be caught between the past and the present. Sometimes I found myself buying something because Ben would have wanted it. When I got home, I was only reminded that he was no longer here, and then I felt Dopey, and more sad.
There are still times when, in the middle of nowhere, something will trigger great sadness and I will break into tears. People are generally understanding, but I still feel kind of Dopey.
Trying to step back into a social life, reaching out to old friends and new people has me feeling awkward and yes, a little Dopey. I feel most Dopey since I have delved into online dating. I feel like I never do the right thing, take things personally from people who don’t even really know me, and like there are codes and strategies that I am too Dopey to understand!
Bashful
I love Bashful!
When I was a caregiver, asking for help and not even knowing exactly what to ask for was embarrassing. Having to explain to professionals, or even friends, some things I would have preferred not to discuss, or even know about, was definitely cause for me to feel Bashful!
Throughout the early days of grief and even now, it’s been embarrassing to have a setback or to feel overwhelmed with sadness or tears, especially when I have felt that people are judging how I’m grieving, how long I’m grieving, and what I am doing to continue living and reshape my life.
As I’ve stepped back into life, I have had to overcome my general shyness to create a new social life. I have reached out to old friends and made some new ones. I have also joined some online dating sites in an effort to find love again. It’s very difficult for me. And, it’s been very disheartening, amplifying the feeling that Ben is the only person who would ever really “get” me. But, despite embarrassment and vulnerability, I press on.
I also feel Bashful about things that are not going as well as I would like them to go, like online dating. I don’t feel like my life is where I want it to be, though I am proud of myself for taking many steps forward, but I am self-conscious and sometimes want to withdraw and stay by myself.
Grumpy
Staying cheerful, positive and focused when my dad and Ben were Grumpy was difficult. They were understandably Grumpy, but their taking it out on me sometimes only made for more Grumpiness! When I had been through all of the scenarios that I just described, sometimes in a single day, it was pretty easy to be Grumpy!
Ben (pre-ALS) and Grumpy, Walt Disney World, 2001
Now, it’s usually the setbacks that have me feeling Grumpy. The events dim my mood, like when I went to the Georgia Aquarium and my immediate reaction as I walked through that magnificent facility was anger that Ben did not live to join me and have that experience. Sadness and devastation were familiar to me, but the anger was new and it left me feeling Grumpy. I am also Grumpy when I receive unsolicited advice and judgments about how I should handle my life and how I should feel.
To anyone who has seen that side of me, during caregiving and as I’ve traveled through and emerged from the other side of grief, I do apologize!
Happy
Walt Disney World Parade, July 2014
Even in the worst and “grumpiest” days of caregiving, when Ben and my dad were struggling and patience ran thin, there was still happiness, albeit bittersweet at times. Sharing good times, making each other laugh, seeing Ben or my dad enjoy something, and successfully meeting their needs, were all positive and joyful experiences that definitely made me Happy!
In the early days of grief, you could call me Happy in those moments when I was lost in good memories or I woke up without dreading the day and the thing that would trigger my sadness.
Now, you can color me Happy when I realize that I am not just going through motions, and I actually am enjoying the present without feeling guilt. I realized this holiday season that I have once again found my genuine smile. I enjoy myself and immerse myself in life and activities I love. In the back of my mind is always the feeling that I wish Ben was with me, but I am usually more comfortable with that. I still have my setbacks, but I can be happy again and it feels good.
Sneezy
Well, this might not apply to everyone, but I’ve got allergies, even to my cat, whose name, by the way, is Disney! I love her and would not trade her for anything, so I deal with the allergies! Some of my allergies actually subsided after I lost Ben and my dad, leading my doctors and me to think that stress exacerbated my problems.
Doc
As you can tell, Ben preferred to take my pics with the dwarfs!
As their caregiver, although Ben and my dad did have medical care, when either of them didn’t feel well, sometimes it was up to me to figure out what might help. Sometimes, what we thought could be symptoms of a big problem would just go away. Sometimes I had to seek more advice or help. This is as close to a Doc as I will ever be!
Call me Doc as I have diagnosed my experience with grief. Am I doing ok? Will people think I’m doing ok? Do I care if people think I’m doing ok? Should I care? Where should I be right now in this process? Am I “normal”?
Even now, as I feel that I have stepped back into life, and I’ve even felt that I found my smile and childlike enthusiasm for the holiday season again, I assess my progress in coping with grief and my emergence from the very dark days. I read posts from the days when I just started the blog in 2016 and analyze what has and has not changed, what triggers setbacks and what’s healthy or potentially troubling.
I am happy to say that I feel that, overall, I’m doing well. This Doc rests assured that healing happens.
How about you? Are you more Snow White or one or more of the dwarfs? Please share in the comments section below. If you don’t see the comment box, just click on the title of this post.
