Walt Disney was born on this day, December 5, in 1901. He is an idol of mine, and such a huge inspiration, for his unbridled imagination, firm belief and proof that dreams can come true, and tremendous vision. I am simply in awe of his legacy to this world.
In my blog I shine the light on wonderful memories of Walt Disney World and how it makes me feel so connected to my mom and to Ben, and for that I will always be grateful.
So, in honor of Walt’s birthday, I have put together just a few of his quotes that are special to me.
“That’s the real trouble with the world. Too many people grow up.”
My parents with Mickey in 1987
“People who have worked with me say I am ‘innocence in action.’ They say I have the innocence and unself-consciousness of a child.
“Laughter is timeless, imagination has no age, dreams are forever.”
“The greatest moments in life are not concerned with selfish achievements but rather with the things we do for the people we love and esteem.”
“I hope we never lose sight of one thing-that it was all started by a mouse.”
“Why be a governor or a senator when you can be king of Disneyland?”
Happy Birthday, Walt, the consummate child at heart!
My cat, Disney, celebrating Mr. Walt’s birthday, along with Duffy (X 2) and Eeyore!
Do you remember Pollyana, the eternal optimist from 1960 Walt Disney Productions film of the same name, and based on the novel by Eleanor Porter? Pollyana always saw the bright side, and although at first, she got on the nerves of cynics, she ended up endearing herself to them and enriching their lives. As caregivers, it’s easy to lose a sense of optimism, or to see the bright side of life. I remember waking up and dreading what the day might bring. A day without a crisis was a great and welcome surprise, but I didn’t dare expect or anticipate it. I did hope for it. Grief carries that same tug of emotions. I have a lot more good days now, so it hits me hard when I am caught off guard by something that triggers tears or sadness. I sometimes try to avoid things that I think will make me sad, but I cannot anticipate what might cause the grief to surface. It occurs to me that in these down times, I need a little Pollyana in my life!
There’s always a pressure to be in the holiday spirit, and that can be stressful for anyone. I’ve been feeling a little down since Thanksgiving. It bothers me because I’ve been feeling more empowered since I went to London. I can intellectually understand the grief, I can analyze it, I can say that what I am going through is completely normal. Grief, however, is sneaky and unpredictable. And, I have become more self-conscious about grieving. People ask how I’m feeling and I’m not sure how I should react. If I say I’m fine, they either respond with “really?” as if I am betraying my loved ones or could not possibly be fine, or they have a sense of relief. Of course, there are the people who are genuinely interested and are happy for my good days, but sympathize with my bad ones. But, there are also the people who have given me a time frame for grief, and are impatient if I do not appear to have “moved on,” or those who have lots of inappropriate and unsolicited advice, and, for those people, I am never anything but superficial in my responses. I don’t see any point in foolish discussions or being defensive about my feelings. I do, when necessary, rely on the wisdom of Scar (click here for that post).
I do love the idea of the holidays, and I do love my decorations, although now they hold memories that are bittersweet. Since I was a young girl, I have loved being in NYC during the holiday season and I have so many fond memories of looking at all of the department store windows with my mom and my aunt Eleanor. The streets here are vibrant, with holiday windows, pretty lights and holiday craft markets. I try to focus on those good memories, but I can’t seem to keep my thoughts from drifting to the winter of 2014, when the only lights I saw were from the car window as the taxis brought me to and from the hospital, where I visited my dad until he went to the hospice, and then I saw lights from the Long Island Rail Road train. After he passed away, I was Ben’s caregiver, so there was little time to wander the streets. Last year, after Ben passed away, I had the time to the see the holiday windows and I even wanted to feel the excitement. However, I quickly realized that it was too soon after losing Ben and I was hurting from the loneliness of my first holiday season without him. There were simply too many thoughts of recent sad holidays. Having the time did not mean that I had the desire or the motivation to enjoy things, and certainly not in the same way. Those thoughts began to plague me again during Thanksgiving. I had the opportunity to view Bloomingdale’s holiday windows a couple of days ago and I used a little Pollyana enthusiasm, and was even proud of myself for not avoiding a potential trigger of sadness, but I found myself just going through motions without the excitement I used to have.
Watching Walt Disney Productions’ Pollyana recently, I was reminded of her wonderful world view and of the “Glad Game.” This was a game that Pollyana’s father taught her to deal with disappointment. You turn every bad situation around and think about something you’re glad about regarding that situation. What a gift to be able to always see a good side of things, even if it signals a bit of naivete. I was inspired by watching this sweet little orphan tirelessly bring cheer and optimism to everyone.
Given my current less than upbeat mood, I decided to play the “Glad Game” like Pollyana, and here are a few things I learned:
Being a caregiver was difficult and heartbreaking, and the memories of those experiences continue to weigh on me. There were times of high tension, anger and resentment on my part and on Ben’s, which time has helped me to better understand, but which have also left me somewhat scarred. But, I’m glad to have been able to take the opportunity to show so much love and caring to him and to have had such a profoundly loving and rewarding experience. And, I’m glad that over the course of our 16 years together and while he was in the hospice that we shared great love and appreciation for each other.
I’m still sad that my dad isolated himself and did not let himself enjoy life while he could. I always hear that I was his whole world, and that means everything to me, but it was also a huge responsibility as well as an exhausting task to always try to motivate and cheer him up (I think my dad would even have been a challenge for Pollyana). But, I’m beyond glad that I made him so happy with the books and gadgets I brought him, our many daily conversations, hearing about my adventures, and my constant presence, caregiving and love. That’s a uniquely special feeling.
I’ve lost the people in my family I was closest to in this world and I miss them every single day. But, I’m glad to have had those deep and meaningful relationships and, in the case of my dad and Ben, that I could be the person they turned to as caregiver. I carry all of them with me in my heart and I know that their strong influence is reflected in the person I am.
During these family holidays, I have very little sense of family and very big sense of not belonging anywhere. But, I am very glad to have wonderful friends who include me as part of the family, and they have become my family.
My holiday ornaments bring back memories that are beautiful, but are also reminders of memories I can never relive. But, I’m so glad and lucky to have had the experiences that created those memories. I am glad that I am still able to smile when I look at them, even if I smile through tears. I’m also glad I found the strength and zest to begin to create new memories, even though I have not quite worked through how to weave together past and present.
My emotions are all over the place and I feel very vulnerable and unsettled. But, I’m glad that am a creative and resourceful person who can blog to help myself and engage with other people who struggle as caregivers or grievers. I’ve been inspired and comforted, as well as validated, by much of what I’ve read, and I hope that my words have a positive effect on other people.
So, did the “Glad Game” help me? For me, I think that the notion of “glad” is a little simplistic, and it’s more about gratitude. But, to get myself into the habit of trying to look at things from a different perspective, as the “Glad Game” does, serves me well. I think it would serve most of us well. And, it might help caregivers get through difficult circumstances. When I was a caregiver, my feelings and emotions were very conflicted- I was satisfied yet frustrated, strong yet weak, giving yet resentful, optimistic yet pessimistic. Coming out the other side of that experience, and now in grief, I see that caregiving has changed me at my core. Some of the positive and negative ways are visible and I believe that there are other aspects that I have yet to discover. I feel that in some ways I found myself and for that I’m glad, or grateful. I see that I am comfortable as a caregiver and maybe that’s why I always loved the field of education and teaching. I do not romanticize the experience, or forget the extreme hurdles, but I treasure the unique relationships that developed as a result of caregiving. I am even pursuing certification as a caregiving consultant beginning in January 2017. I have a heightened sense of gratitude that has improved my outlook and sense of myself. I am a compassionate person, and the compassion I’ve seen in others has shown me that compassion will reveal itself where least expected. I am most assuredly glad about that, because that is the kind of magic that keeps me believing in pixie dust and wishing on stars. Maybe I do have a little bit of Pollyana in me after all!
Try the “Glad Game.” And watch Pollyana. Please get back to me and post your comments in the space below.
For those of you who remember the TV series Bewitched, the woman in this clip, Agnes Moorehead, was Endora!
Our last family Christmas/Chanukah, 2014. We got matching Mickey and Friends pajamas- even Disney! (She liked the pajamas, but not the picture-taking!)
Thanksgiving has come and gone. My second Thanksgiving spent without Ben. My second holiday season now begun without Ben. I’m sad to say that I’m finding this year to be getting off to a very rocky start. I wasn’t expecting that. I guess I also wasn’t expecting to feel worse the day after the first anniversary of Ben’s “leaving,” as he would say (click here to read that post), so I guess I need to abandon my expectations. Grief. If only it came with an instruction manual. I understand some of it, and can predict and gear up for bad days like anniversaries of various events. But, when I’m unprepared, the sadness really shakes me.
I am grateful for so much, including having wonderful friends who include me with their families. But, I think that last year I went through motions and was either sad, numb, distracted, or any combination of those feelings. This year, I took the time to think about what I would like to do over the long holiday weekend, and I chose to decorate my apartment for the holidays and to get together with friends.
Thanksgiving is a family holiday, and I’ve lost my parents, closest relatives, and Ben. My aunt Eleanor has Alzheimer’s disease, and although she seems to recognize me as familiar and we relate very much as we always did, I’ve lost her, too. My friends are my family, and I am so fortunate for that, but it’s also been a harsh reality and an adjustment. I think it’s also part of the process of grief, and of life.
Last year, I set up the sparkly pink and silver tree that Ben got me a few years ago, when a real tree and the lights became too much to deal with, given his caregiving needs and our limited space. Ben always left decorating the tree to me, because he said he’d never seen anyone get so excited about decorating a tree. But, he would occasionally chime in on where he thought ornaments should be placed. I missed him while I was decorating, but I missed him no matter what I was doing. I didn’t get any new ornaments and kept everything as it had always been. I even put his favorite ornaments in the same places on the tree, where he was able to see them from his desk. I remember that the tree did not bring me a lot of joy, but it didn’t make me especially sad either. I was struggling with so many emotions at that time that the holidays were just one more emotional episode to add to my list.
Ben loved Sully (top right). The high-four balloon had symbolism (see my birthday post). The French girl from It’s a Small World was also a favorite- ooo la la!
This year, although I miss having a real tree, I felt like I wanted to keep the pink one again because it was a gift from Ben. I expected to set it up on Thanksgiving with our ornaments, most of which are from Walt Disney World. Last winter and spring, I repainted, recarpeted and got some new furniture and I was actually looking forward to seeing my holiday decorations in my “new” setting. It didn’t turn out to be the positive experience I thought it would be. Instead, I’m feeling down and defeated because decorating has been a laborious and sad process. The bride and groom Mickey and Minnie ornaments that we got when we became engaged just reminded me of a happily ever after that didn’t happen as planned. On the other hand, I still love to look at the photo ornaments that we had made after each trip. I can see the way he changed over the 6 years that his ALS progressed, and yet I also feel so grateful that we could make those trips after his diagnosis and that we are so happy in each photo. And, I remember how we pored through photos to pick the ones that would become ornaments.
It’s a Small World (my favorite song!) at the top and to the left of our photo ornament is the Hawaiian girl from that attraction- we loved her.
Again, I placed his favorite ornaments on the tree where he would have been able to see them from his desk. It’s where they belong. I did get some new ornaments in London. I thought they would be nice, new additions to reflect a favorite place and new things in my life. But, when I placed them on the tree, I immediately felt that they didn’t belong. They interfere with my memory of what is still, in my mind, our tree. My tree is a wonderful visual representation of my life- the wonderful memories of times with Ben meshed with the addition of new memories I’ve created as I’ve taken my first baby steps on a new path. By including my visit to London, which was a big step for me (click here for that post) I’ve also shown that I’ve made progress in my grief and my life. However, I did not anticipate that I would also see a jarring clash of past and present. I spent so much time trying to keep things the same- even continuing to arrange things for Ben the way I used to- but things are not the same. The beautiful ornaments that I found in London change what I seem to want to keep frozen in time, as if Ben is still here. I did not realize that until I saw all the ornaments hanging on the tree.
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.
This year, I feel sharply the pain and the loss, while I’ve also accepted that I need to shape a life. It’s a difficult balance, and maybe that’s why this year is harder. I have heard that sometimes the second year is harder but I don’t think there is a steadfast rule. That’s the problem with grief. There is not a one size fits all way to experience it. Last year everything was a mess. This year, just as I felt I’ve made some progress in adjusting to life, I was caught off-guard with tears and loneliness when I was doing something I looked forward to doing.
Ben’s little Disney fiber optic tree. It was always on the corner of his desk. I got a new table, but I still keep the tree in the same place.
I wrote this blog post because I thought that sharing my own experience might help other people in grief and struggling with not knowing how to handle the holidays or where they belong. Maybe you can relate or maybe this is not your experience. I do think that part of grief is accepting that there are going to be good and bad days. I am grateful that I do have more good days now. My very whimsical tree still shouts a love of Ben and our memories and love of Disney. I have faith that as the season progresses and I continue to adjust to my tree, and, beyond the holidays, my life, that I will find a balance that respects my memories and traditions but also welcomes new ones.
Feel free to share your experiences or ideas or advice in the comments section below.
Today is the 25th anniversary of the release of Walt Disney Pictures’ Beauty and the Beast, one of my all-time favorite films. I am reminded of the 2012 release of the 3D version of the film. Ben and I had made a tradition of attending opening days of the Disney movies. As his ALS progressed and getting out and about was more difficult, we could not maintain the tradition, but we did continue to see the films. Ben knew that I was eagerly awaiting Beauty and the Beast 3D because I couldn’t even imagine how they could make it more beautiful (they did.) I did not mention going on opening day and I thought it would be too exhausting and complicated to get him dressed and down the stairs after a day of work. That release date was also the anniversary of the passing of my mom, and I was not in the best frame of mind. No problem. We’d see it at some point. When I got home, Ben was waiting for me, all ready to go. It touched my heart more than I can express in writing. His dexterity and motor skills were already compromised, and it took him all day to get dressed, but he wanted to have our date night. And, because my mom and I shared a love of Disney, he thought that going to a Disney film on that day would be a lovely way to honor her. That was Ben- always romantic. We had a beautiful evening. And, now I have another special memory.
A little more than a year has passed since Ben left this world, and it’s almost 3 years since I lost my dad. Grief is filled with ebbs and flows of emotion, and I do, at times, unapologetically allow myself to give into the loneliness and memories of the ugliness of cancer and ALS, the messiness- emotional and physical- of caregiving, as well as the profound sadness over my losses. The sadness is magnified around a holiday like Thanksgiving, which reinforces that I’ve lost the family to which I was so close. Thoughts also resurface of Thanksgivings spent in the hospital with my dad or at home with Ben, when he was understandably down about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. And yet, although it was easy to lose sight of it at the time, I did have things for which to be thankful. I still do.
“The more you are in a state of gratitude, the more you will attract things to be grateful for,” said Walt Disney. In theory, I agree with Walt (OK, so no surprise there!) But, when I was watching my loved ones deal with ALS and cancer, and I was struggling with caregiving, and then grief, although I was appreciative of people and things, I can’t say that the state of gratitude was where I lived, or even where I wanted to be. It took too much effort. Ben lived in a state of denial about the progression of the disease, and I lived in a state of anxiety, more relieved than grateful for any day without crises. To me, saying I was in a state of gratitude would have implied a sense of peace and contentedness that I did not have. As time has passed, however, I’ve learned that “being in a state of gratitude” did not mean to naively ignore or diminish the impact of the bad experiences, or to try to “push Sadness into a corner,” like Joy from “Inside Out” (click here for that post.) To be in a state of gratitude gives me the very important power of perspective. There were times that I could not get beyond the chaos and sadness, and that was and is fine and genuine, but I can also shift my perspective to focus on the many aspects of these experiences that were filled with love, compassion and caring, and those do compel gratitude and invite more of these thoughts. That’s also genuine, and it’s a good and humbling feeling.
My dad and I
I feel very fortunate to be able to share some things I’ve discovered in my state, or perspective, of gratitude.
At the top of my gratitude list is gratitude to have been the caregiver for two supremely important people in my life. Caregiving was the most heartbreaking and challenging thing I’ve ever done, but it was also the most important, valuable, loving and rewarding thing I have ever done. I could not save my dad or Ben, and I wish we did not have to take these journeys, but I am so thankful that they knew that I was completely devoted to them, and that I would love them, care for them and provide a sense of security to them until they left this world. It didn’t always feel like it, but it was a gift to be able to feel and express that depth of love in such tragic circumstances. And, I treasure the knowledge that they loved me.
I have said it before, but can never say enough, that I am grateful for my friends, who have shown me such kindness, generosity, compassion and encouragement, while I was caregiving and then, in grief. Their spirit extended to Ben as well. In Ben’s situation, when family didn’t step in -and there were definitely disappointments and dramas- we could always count on friends. I consider it a precious gift to have these wonderful people in my life and to know that I am loved and that Ben remains in their hearts.
I am grateful that in June I was offered an opportunity to present at the annual memorial service of Mount Sinai Medical Center’s Visiting Doctors Program a public tribute to Ben and to the people from that program and the hospital who were so fantastic to him, and to me. ALS is a rare disease, and although it is difficult for me to speak publicly, I feel it is important to take any occasion to share Ben’s experience and, hopefully, contribute in some way to an overall understanding of what it is to live with ALS and why there must be tireless efforts to find a cure. If you’d like to read my tribute, click here.
I am grateful to find comfort in the arts and in my creative endeavors. Blogging has been tremendously helpful, and it touches my heart to know that readers find comfort in my words. I’ve gotten back into my craft work with miniatures and into Pets en Voyage, the pet souvenir business Ben and my dad helped me develop and launch. I’ve also created displays of photos and memorabilia around my home, and looking at these things always makes me smile, if sometimes through tears.
I am grateful to Walt Disney for giving us all things Disney. I am simply in awe of his imagination and vision. I am grateful to Disney for amusement, consolation, comfort, life lessons, belief that dreams come true, perspective and incredible memories. And, because I am so grateful, I even named my cat Disney. I am thankful for her every single day for the love, cuddles and laughs that she gives me and for the love she showed to Ben, especially when she visited him in the hospice.
I am grateful to be resourceful, and to have sought out support groups and resources that have guided, encouraged and motivated me, and let me know that I am not alone in my feelings.
Walt Disney also said, “We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.”
I’m grateful that for the first time in a long time, I am cautiously optimistic about starting down a new path to see where it leads as I reshape my life, though there are and there will be setbacks. My memories, and desire to respect Ben and my dad and make them proud, will accompany and guide me on my journey and will always be a part of me, and that gives me great comfort and peace. This would also be a good place to add that I am grateful to have my mom’s child-like wonder and spirit, with an inner child that cannot be contained. It allows me to continue to wish upon stars for dreams to come true. I just keep reminding myself of what I learned from Christopher Robin and Winnie-the-Pooh: “You are braver than you believe, stronger than you seem and smarter than you think.” I know I’ll be okay.
Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief. I hope that if you are reading this, and you’re struggling with gratitude and the holidays, that you will be true to your feelings but also consider a perspective that allows you to see and be grateful for love, compassion and good memories to carry you forward. And, take a bit of time (I do realize that time to yourself can be a luxury) to think, write, draw or in some other way acknowledge yourself.