grief

Happy-ish Holidays! Healing Happens

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Walt Disney World, ALS

Ben and I with Santa (We know him!) in 2007, pre-ALS

It’s Christmas Day and the first day of Chanukah. I send you good wishes. NYC is pretty at this time of year. We’ve only had a bit of snow, though it got messy and ugly pretty quickly. I saw a couple of store window displays, but was not really feeling enthusiastic, and I did not visit the Rockefeller Center tree. Given its proximity to Trump Tower, I do not think I feel like dealing with the chaos. Since I put up my tree and Chanukah display right after Thanksgiving, I’ve had time to conjure some spirit. I don’t pressure myself to engage in holiday cheer, but I also try very hard not to dwell-at least for long- in sadness or let myself feel obligated to visibly show grief.  But every step I take forward comes with the risk of a setback and difficult emotions (click here for prior post).  This time, that setback came when it was time to decide on a holiday card.

For many years I’ve hand-made a card that’s usually featured a family pet.  In general, I make more of a New Year’s card, to avoid family conflict over my love of Christmas when we celebrate Chanukah. Last year, I wasn’t sure if I wanted to do a card at all, or if it was even “appropriate.”  It was only four months since Ben had been gone.  I most definitely was not feeling very cheerful.  At the same time, having lost my dad in 2014, and then Ben in 2015, I kind of wanted to welcome a new year, though my track record of bad years made me wary of much optimism.

I missed Ben terribly and I wanted people to keep him in their hearts. In grief, he certainly took center stage in my feelings. I decided to create a tribute card with some of our favorite pictures from Walt Disney World, where Ben looked so happy, even as his ALS had progressed. It felt like the right thing to do.  Disney was also very, very okay with not having to wear a Santa hat or reindeer antlers, though, oddly, she does like her Mickey Mouse pajamas! The only song that resonated with me was “Auld Lang Syne.” I was still pretty much in shock and exhaustion over the loss, and the notion of remembering loves and lives lost but not forgotten, was a comforting and peaceful sentiment.  It suggests keeping our loved ones with us in a spiritual way that, to me, is very beautiful, if also bittersweet.

Should auld acquaintance be forgot,
And never brought to mind?
Should auld acquaintance be forgot,
And auld lang syne! – Robert Burns

ALS, Disney,Grief

Holiday Card 2015
A Loving Tribute to Ben

I shared the card with old friends and new ones, with people who had known Ben for years and saw the changes as the ALS progressed, and with our Facebook friends and acquaintances, some who did not really know Ben, or know him well. I felt then, and I feel now, that it is important to share with people what ALS is and does to a person, even though a photograph only conveys some of the physical manifestations of the disease.

As this year’s holiday season approached, I was not sure how I felt about making a card to welcome 2017.  Although so much of what I do still includes photos of Ben, and he is with me in all that I do, I did not feel that I should make another tribute card. Likewise, I did not want to make a card that shouted gleeful holiday spirit that I simply do not feel. I do like to take this time of year to reach out to people to extend holiday greetings and let them know I am thinking of them and I wish them well. I think that my internal debate about whether to make a card and what it should be helped me realize that creating my cards has become an important tradition to me.

For a few years I had toyed with the idea of doing an “It’s a Small World,” card. It started when Ben gave me some of the It’s a Small World singing dolls for Christmas. I never got to make this card while Ben was still here and I decided to give it a go this year. Disney was very cooperative and I did get a cute picture. I feel that the lyrics to the song were very appropriate for welcoming a new year. Given the current political climate, it seemed especially timely.

It’s a world of laughter
A world of tears
It’s a world of hope, 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. – The Sherman Brothers

I chose some of our favorite photos from the attraction to border the center picture of Disney and friends by the tree. I enjoy playing around with Photoshop, so I enjoyed the project of making the card. I felt sort of guilty, and sad, for making a card that did not formally acknowledge Ben. When I began to sign the cards, I felt doubly sad to write only “Love, Abby and Disney.” However, I did have to chuckle as I remembered how Ben joked that he was honored that I signed his name before Disney’s!

Walt Disney World, It's a Small World, Grief,ALS

Holiday Card 2016

I wrote to some people to explain that It’s a Small World was a favorite attraction of ours, and my favorite song, and that the card featured some of our most loved pictures from the ride, as well as the dolls that Ben gave me. As I wrote this explanation, I realized that whether or not his name or picture is on the card, Ben is a huge part of it. These are our photos, our memories, and his spirit and thoughts of him are right there in the card. He remains in my heart in so many ways and is with me in the less festive moments when I need comfort, but I do believe that he is also with me as I welcome this new year.  For that matter, so are my dad, my mom and my grandma.

As I think back to last year’s holiday season, I can honestly say that I could not have made this year’s card last year. The holiday season arrived too soon after losing Ben.  It was all too raw and I only wanted to share how much he was missed and how vibrant he was, even with ALS. Over the past sixteen months I have had much time to reflect. I also participated in support groups that helped me sort through feelings and emotions and brought new friends into my life. This blog has been another outlet of working through grief and the caregiving experience. When I’m feeling bad, I feel as if I have not healed, but reflecting on things like this year’s card, I realize that healing happened, is happening, and will continue to happen.

I always seek to honor and celebrate Ben, and I’m sure I always will. Some people feel uncomfortable mentioning him, or they feel that if I talk about him that I am dwelling in the past and/or grieving too long. On the contrary, I like to know that people remember and think of him and I am happy to hear their memories. There is still sadness, but I also allow myself to enjoy more and more good times in the present, as I make new, good memories.

Disney,ALS,grief,Christmas,Chanukah

Our last family Christmas/Chanukah, 2014. We got matching Mickey and Friends pajamas- even Disney! (She liked the pajamas, but not the picture-taking!)

I have begun to take steps forward to reshape my life and let in the light, and that also feels good and right, even if my paces are somewhat awkward and unsteady and I fall backwards at times. Sometimes I react to memories or to present life and thoughts of the future with tears and anxiety, at times I ask for help and support, and sometimes I smile with cautious optimism and the feeling that my loved ones are watching over me. I react on my own terms, as anyone in grief must be allowed to do. It’s all healing and it’s all okay.

Wishing you and yours happy, healthy, peaceful and healing holidays!

 

 

In Caregiving and in Grief, I Could Be All Seven Dwarfs, Sometimes in ONE Day!

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Original ad for the movie premiere.

 

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 have 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 the 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 lack her stellar housekeeping skills! Alas, I relate more to the dwarfs! I’ve written about how, as a caregiver, I often felt like all seven dwarfs in the course of a single day (click here for that post).  To mark this anniversary of the film’s premiere, it seems fitting to me to reflect on how, in grief as in caregiving, I can feel like all seven dwarfs- at times, within the course of a single day.

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 a moment in the present without feeling guilt.

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Doc– Call me Doc as I diagnose my 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”?

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 have 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 the 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 lack her stellar housekeeping skills! Alas, I relate more to the dwarfs! I’ve written about how, as a caregiver, I often felt like all seven dwarfs in the course of a single day (click here for that post). To mark this anniversary of the film’s premiere, it seems fitting to me to reflect on how, in grief as in caregiving, I can feel like all seven dwarfs- at times, within the course of a single day. 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 a moment in the present without feeling guilt. Doc- Call me Doc as I diagnose my 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”? Bashful- Sometimes it’s embarrassing to have a setback or to feel overwhelmed with sadness or tears, especially when I feel 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. It can be difficult to ask for help, and I’m growing too Bashful to ask people who have been listening to me to continue to do so. I’ve repeated the same things so many times, and I do wonder sometimes what people must think. Sleepy- There are many sleepless nights for so many reasons- recalling good and bad memories, anxiously contemplating the future and feeling the loneliness and the loss. Dopey- Being caught between the past and the present can be baffling. Sometimes I find myself buying something because Ben would have wanted it. When I get home, I am only reminded that he is no longer here, and then I do feel Dopey, and more sad. There are also 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, and Bashful, for that matter! Grumpy- The conflicting emotions of grief definitely make me Grumpy at times. Sorry! Sneezy- Still allergic to Disney, the cat! I still would not trade her for anything. She has been the greatest comfort to me. How about you? Are you more Snow White or one or more of the dwarfs?

As you can tell, Ben preferred to take my pics with the dwarfs!

Bashful– Sometimes it’s embarrassing to have a setback or to feel overwhelmed with sadness or tears, especially when I feel 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. It can be difficult to ask for help, and I’m growing too Bashful to ask people who have been listening to me to continue to do so. I’ve repeated the same things so many times, and I do wonder sometimes what people must think.

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Snow White and I love Bashful!

Sleepy– There are many sleepless nights for so many reasons- recalling good and bad memories, anxiously contemplating the future and feeling the loneliness and the loss.

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Walt Disney World Halloween Electrical Parade

Dopey– Being caught between the past and the present can be baffling. Sometimes I find myself buying something because Ben would have wanted it. When I get home, I am only reminded that he is no longer here, and then I do feel Dopey, and more sad. There are also 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, and Bashful, for that matter!

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Not sure which of us is the real Dopey!

Grumpy– The conflicting emotions of grief definitely make me Grumpy at times. Sorry!

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Ben (pre-ALS) and Grumpy, Walt Disney World, 2001

Sneezy– Still allergic to Disney, the cat! I still would not trade her for anything. She has been the greatest comfort to me.

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

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.

Working Through Grief with Faith, Trust and Pixie Dust

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Ben playing the drums at Walt Disney World’s Animal Kingdom. He loved listening to and making music.

Sometimes, in grief, it seems like pixie dust is sprinkling down on me 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. Let me share an experience I had last night.

I went to see the Paul Winter Winter Solstice Celebration at the Cathedral of St. John the Divine in Manhattan. It was something I have wanted to do for years. 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 playing and listening to the soprano saxophone, which is Paul Winter’s instrument. We just never seemed to make it to a concert. After he was diagnosed with ALS, it was too difficult to get there. I would never have gone without him.

I’ve been slowly getting used to doing things that I could not do while Ben was ill. I still experience a feeling of guilt- that Ben is not here to enjoy things, that I should not enjoy life if he cannot- but I am pushing through that to find that balance of continuing to live while I keep him with me in my heart. It’s not easy, and it comes with tears, but I can also say that even six months ago, I would not have been able to do something like go to a concert that Ben would have loved and that I wished we had been able to attend together.

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 concert experience. I listen to music differently and more intently because of Ben’s love and understanding of it.

It’s hard to even describe the concert, other than how incredible it was- it was a winter solstice celebration, with the participation of the Forces of Nature Dance Theater, vocals by Theresa Thomason and, of course, the brilliant consort musicians. The production elements were visually stunning, and we were mesmerized.

Grief

The Cathedral of St. John the Divine, NYC- Paul Winter ‘s Winter Solstice Celebration

I did not know that this year, there was 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. My immediate reaction was that Ben should have been there to hear this and I did shed some tears.  However, there was also a deep feeling of comfort, and 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 this first time, this kind experience did not devastate me and overwhelm me with guilt. 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.

Grief,ALS

Lyrics of “In My Life” on the card I designed to send to people for their expressions of sympathy.

Maybe it was not mystical, but a fortunate, lovely coincidence. Of course, that’s possible. But, my reaction of feeling comfort and even joy indicates a growth in my own spirit, and a shift in my grief. It feels like I have made some progress to believe that I am ready to have this kind of experience and move beyond profound sadness to look for messages of love and hope and connectedness. 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 love, and that feels like pixie dust to me.

I was feeling good this morning. It was a feeling of knowing that Ben was with me and that I was being watched over. It snowed a bit in NYC and it was nice to see when I went out. Ben and I loved the snow. I turned the corner onto Broadway and enjoyed seeing the Christmas tree stand where Ben helped me pick my first real tree, and where we got all of our subsequent trees. I had to smile when I saw there at the stand a huge inflatable penguin. Ben and I absolutely loved penguins, and we had quite a fun collection of penguins. You can call it a coincidence and a typical icon of winter and the holidays. I call it a sign from Ben. I think Peter Pan was right when he said, “All you need is faith, trust and pixie dust!”

  Ben in healthier days in Woodstock, Vermont, 2001. We loved it there.

Inflatable penguin at the Christmas tree stand on Broadway in NYC.

“All you need is faith, trust and pixie dust!”

 

 

 

 

One Dance

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This beautiful song by Chris Martin, and performed by Jodi Benson, never made the final cut of “The Little Mermaid.” I discovered it on “The Essential Collection of Disney Love Songs” and it also appears on other Disney albums. Unlike many other Disney memories that I share on this blog, this song was not one that held a specific meaning for Ben and me, and it did not represent a special time in our lives or relationship. It was not even associated with our time spent at Walt Disney World. But, it is the song whose lyrics spoke to me at a critical time when Ben was in the hospital. Given Ben’s profound love of music, I believe that he would appreciate that it was the lyrics to a song that proved to be so powerful to me.

As the title of the song might imply, Ben and I loved to dance. Nothing fancy, but we would put on music in the apartment and just dance. And, when we worked together at The Little Orchestra Society, we always danced at the organization’s events. It was romantic, silly, fun- it was us.

Before he ever went to a doctor, much less was diagnosed with ALS, Ben started having trouble with his legs. It took him a long time to admit to me that he had fallen down the steps in the subway and on the street, though he had told me that he was perplexed that I could do my Zumba routines better than he could- coordination and grace are not my strongest suits!

The first and last pictures on this slide show were taken at the Bar Mitzvah of my good friends’ son. Ben’s legs were bothering him but he wanted to dance. We were having so much fun at this happy event. As it turned out, this was the last time we danced together. Who could have guessed? I am so grateful to have this photo!

As it became more difficult for Ben to stand on his own, music and dancing still played a part in our lives. While he could still walk several steps, sometimes I would just help him up and we would hug and sway to the music. It felt like dancing, and like old times, and that felt good.

I remember that during our first visit to Walt Disney World after his diagnosis, I was helping him to stand up from a rather low sofa in our hotel room. I counted to 3, but then, remembering the song “1,2,3” by Gloria Estefan, I added the song lyrics, “4, come on baby say you love me!” From that point on, we rarely just counted to 3 and he often laughed as I reached “3,” waiting for me to add the rest. As the ALS progressed, Ben was less and less mobile, but our counting and that song continued to make us laugh. Transferring a person is not easy, and it can be stressful because there is always a risk of falling, or dropping, so it was good to have these little moments of levity.

Our lives changed drastically, but because it happened over a period of almost six years, maybe some changes felt more subtle. ALS slowly took away Ben’s ability to use his legs, his arms, his hands, his voice. He couldn’t eat foods unless they were pureed. He had difficulty breathing. But, he was still Ben and he had determination (at times, stubbornness) and a good sense of humor. He was also clever and he loved gadgets and technology. For example, he used an app and an on-screen keyboard to use his computer and to send texts through his computer when he could no longer handle the phone. He figured out how to organize some of his things so he could make them accessible. These are just a few of the things that were part of living with ALS. We adapted as best we could.

Ben adjusted to the things he could and could not do as the ALS progressed and I adjusted to new tasks to help him. When I think of Ben’s very serious challenges, it may seem silly to lament an inability to dance. But, dancing was one of the things that was so special, so intimate, so us. In the chaos of the disease, I can’t say that I thought to analyze how much the changes in our lives were affecting us beyond our daily routines. I can’t say that either of us even had, or took, the time to dissect the dynamics. We just kept going. But, losing something like dancing made more painful the shift in our relationship from husband and wife to patient and caregiver. Impromptu moments like dancing to a favorite song were replaced with the more immediate tasks of caregiving. To mention missing things like dancing meant the possibility of upsetting Ben, and making myself sadder, because things were not going to get better and we could not change that fact. Sharing a memory was wonderful, but expressing sadness about our losses was not.

Eventually, yet in a pretty rapid and intense decline, Ben began to have more and more difficulty breathing and eating. His feet were also swelling very badly. He opted to get a feeding tube. However, just before the arrangements were made, Ben ended up in the Emergency Room and he got a feeding tube and a tracheostomy. It felt like it happened in a whirlwind and yet it felt like time stopped. So many decisions to make, and so many adjustments. Suddenly, we could not even communicate in the same way. It was frightening and devastating, but he was so incredibly brave and calm. It was clear that he was not going to be able to come home because he would need 24-hour nursing care, and, intellectually, I understood that. But, I believe that my mind was spinning too much to think about what it really meant. Ben was frustrated and upset about not coming home, and that broke my heart. I was worried about him not being home and my not being able to be with him constantly, but I was also dealing with logistics and his medical teams, and simply being present for him as we determined next steps.

I spent every day and several nights with him during the nearly two months that he spent in the hospital. I usually got home very late at night and sometimes relaxed with music, using Ben’s computer for his playlists, which I found comforting. One evening, I remember sitting at his desk when “One Dance” played. I thought about the fun times that Ben and I had dancing in the apartment and I realized just how much I missed those moments. I had done pretty well with recreating memories, especially when we returned to Walt Disney World for our last visit. But, in that instant of hearing the lyrics to the song, the realization came crashing down on me that we would never dance again, and he would never be home again, and he really was going to die. Maybe you’re thinking that he had ALS, so, of course, he was going to die. Yes, I did know that, but that does not mean I truly accepted it or the fact that the time was nearing. But somehow, hearing those lyrics was a jolt of reality that I had not yet faced.  On that quiet night, listening to this song, I finally accepted and reacted to what I had not until that moment let myself fully believe–that Ben would soon leave this earth and nothing would ever be the same.

There are stars that fill the night, can you see them? 
There are two, or three or gee, a million more 
And I see you in their light 
Oh, me? A dance? All right. 
Just to move and glide with you across the floor 

I would change who I am 
Leave the sea for the sand 
Just to stand with you 
I would leap at the chance 
For a glimpse of a glance 
Of one dance with you 

I still listen to the song even though it always makes me cry. In fact, sometimes I play it when I need a good cry, because, yes, there are those times. I have become unapologetic about embracing sadness, because, frankly, there will always be the tears over the loss of Ben, and how much he and we lost. At this point in time, however, I think it’s a matter of my finding the balance between grief and life. It’s not an easy balance to find, but I do feel a steady shift in my perspective that’s allowed me to bring more joy back into my life while I keep Ben in my heart.

It makes perfect sense that the clearer memories are the more recent ones, during Ben’s ALS, when the physical and emotional issues and tension were center stage. Those issues were not unique to us or even to ALS. They certainly are not the memories I want to define us. However, they are important in their own way, because they represent a strength of heart, love and compassion that saw us through such terrible experiences.

I also want to let myself get transported back to those dances and special times that made us who we were together. The memories I cherish, and that belong only to Ben and me, are simple joys like dancing and, of course, anything related to Disney! I will always miss those times, and I will always know that I am fortunate to have had them. I am pretty sure that I also always will believe in happy endings, pixie dust and Disney magic, too.

One dance, just you and me 
Beneath the moon, beside the sea 
One dance and it’s happily ever after 

Get Some Pollyana In Your Life with The Glad Game!

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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!

Film clip: Pollyana, 1960, Copyright © Walt Disney Productions

 

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