New Year, Old Conflicting Emotions on Life and Loss

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New Year’s Greeting for 2019

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.

ALS, Disney,Grief

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.

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!)

Moving Forward 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, 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.

Grief

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.

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, 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!”

Magic Kingdom, 2006- pre-ALS days

Snow White and the Seven Dwarfs – Kindred Spirits in Caregiving, Grief and Beyond

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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 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

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

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

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

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

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

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!

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

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

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

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

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

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

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!

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.

 

Walt Disney’s Legacy- More than Animation (12.5.1901-12.15.1966)

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Walt Disney, Walt Disney World

Walt Disney’s legacy lives on so vibrantly and timelessly in so many ways that it’s hard to believe that today, December 15, 2018 marks 53 years since he left this earth. I’ve shared some of his quotes that have resonated with me, and I continue to love to read about him and get a glimpse into his artistic vision and the building of his business enterprises. His belief in himself and commitment to his art are things that we can all learn from. He’s been a part of my life for as long as I can remember. I have such vivid memories of my mom talking about her favorite Disney movies and how she loved Mickey Mouse from the time she was a child. Mary Poppins was the first movie I ever saw in a theater. It just amazes me how Mickey and his friends touch the hearts of generation after generation. I believe that Walt Disney’s words of wisdom and legacy will live on, as Buzz Lightyear would say, “to infinity and beyond.”

My blog was inspired by the way that I was affected by Disney films, characters and lyrics in light of caregiving and loss. The same can be said about many of the quotes I’ve read by Walt. It seems to me that this is a good day to reflect on some of his words of wisdom that have consoled, guided, intrigued, and entertained me.  They help me to look to the future with optimism, and I think that’s especially significant as we approach a new year. Also, they make me think about the concept of a legacy. My parents left me with a legacy of kindness, loyalty and compassion and always having a sense of humor and whimsy. I hope that I will always honor them and leave a similar legacy.

“That’s the real trouble with the world. Too many people grow up. They forget.”

ALS,Caregiving,Grief,Walt Disney World, Disney

As someone who still has a lot of my childhood dolls and can’t resist adding new ones to my collection, it is obvious to everyone who knows me that I completely embrace the idea that you need to hold on to your inner child.  As I’ve said, my inner child is very much at the forefront of who I am. For me, watching a Disney film, and imagining a fairy or fairy godmother at my side, also allowed me to escape the realities of caregiving and loss. Ben always said that he loved Walt Disney World because you simply forgot your problems. With a diagnosis of ALS, his problems were huge, but immersed in that fantasy land, he was a big kid having a wonderful time, even despite his challenges. For him to be able to feel that sense of joy and excitement was a gift. Walt Disney envisioned and provided that magical setting. I never want to lose the attitude that allows me to step right into the fantasy the way I did with Ben. I never want to stop wishing on stars or forget the wonder and delight that I had as a child.

“Why worry? If you’ve done the very best you can, worrying won’t make it any better.”

The Dapper Dans were very cool! Ben always loved them.

This is absolutely true. Alas, I am a worrier, and I have to work on this, but Walt was right. I can’t say that any of my worrying helped, although perhaps thinking through worst case scenarios may have helped me prepare for a variety of situations. I’ve heard that worrying burns calories, but I’ve seen no indication that this works! I worry now about my future, particularly without much family. I worry that I will never find love again and I will be alone. But, the worrying isn’t going to affect any change, so it’s time to proceed in the best way I can, and make decisions I feel will help me to create a new life, or, rather, enhance my current one with new love, laughter, joy and peace.  I’m going to try harder to listen to Walt on this piece of advice!

“Life is composed of lights and shadows, and we would be untruthful, insincere and saccharine if we tried to pretend there were no shadows.”

Ben even had fun on the Magic Express wheelchair lift!

There is more light in my life now, and less guilt about feeling happiness, and I know that the people who love and care for me are glad to see me enjoying life again. But there are also the shadows, and I am not someone who likes to, or can, put on a show of emotions. The good and bad moments are all okay. They make me human.

 

“I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter.”

At the Walt Disney World Wishing Well at Cinderella’s Castle- Making a wish!

Some people might think that my obsession with all things Disney and talk of pixie dust and wishing on stars is silly. Well, I think silly is just fine (okay, within reason.) I like to think that it is my inner child reminding me of possibilities and letting me believe in my own happy endings. But, just like Walt, I am realistic and I have experienced enough of life to know that things get complicated, and sometimes, downright ugly. In the face of life’s complexities, it helps me to stay positive if I escape for a while into a Disney frame of mind.

“In bad times and in good, I have never lost my sense of zest for life.”

ALS,Caregiving,Grief,Walt Disney World, Disney

This quote made me think of Ben and his determination to enjoy life despite ALS. He surrounded himself with music and technology, and he ventured into the world and enjoyed all that he could with a zest for life that, I believe, let him manage the disease well for about four years. It was certainly a good lesson for me.

“We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.”

This quote is my inspiration for the future. It’s allowed me to reach out to people, to travel to new places and make dreams come true- in the past year I’ve gone to see the cherry blossoms in Washington, DC and I’ve greeted otters, penguins and dolphins- all things I have wanted to do. Throughout these experiences, I did miss Ben. I also struggle with feeling lost and lonely. At the same time, I believe that my curiosity, desire to learn, love and compassion will keep carrying me forward to find new and more love, laughter, peace and joy. I feel cautiously optimistic about the exploration.

“All our dreams can come true, if we have the courage to pursue them.”

I think that I finally have the strength to summon the courage to follow my dreams. It feels pretty great, and yet a bit scary, to say that. I do believe that pixie dust would help.

“Laughter is timeless, imagination has no age, dreams are forever.”

ALS,Caregiving,Grief,Walt Disney World, Disney

This is a comfort to me. Laughter, imagination, dreams and, of course, love, were the key ingredients in surviving years of caregiving and loss. They have always been there when I needed them, even if, at times, they felt out of reach. This is something to remember always. Never lose hope. Never lose the spark of a dream.

“First, think. Second, believe. Third, dream. And finally, dare.”

ALS,Caregiving,Grief,Walt Disney World, Disney

That sounds like a good plan! Thank you, Walt

 

Wisdom from Walt Disney on Moving Forward

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Walt Disney, Walt Disney World

“We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.”- Walt Disney

I guess with December 5 marking Walt Disney’s birthday, and the anniversary of his death just a week away, his quotes have been on my mind. This quote seems to resonate a lot with me this holiday season. This is my fourth holiday season without Ben. During the first holiday season without him, his loss was very raw, and on top of feeling that devastation, I found myself caught up in the memories of the holiday season of 2013, right before my dad died. That year, I observed the holiday season from car and train windows on my way to and from the hospital and then the VA Hospice in Northport, NY. Though I did decorate the apartment for Ben and me, there was nothing festive about our lives. The truth was that I did not get to really grieve for my dad because I was preoccupied with caring for Ben. At the same time, Ben and I both felt the immense weight of my dad’s loss.

My first holiday season alone was painful. I had always made a silly holiday card starring my cat, Disney, but I wasn’t really in a festive frame of mind. I decided to make a card that was a tribute to Ben, using the lyrics to “Auld Lang Syne.” Since then, I have kind of gone through motions around the holidays. I always put up my tree. I continued to put the tree ornaments that Ben loved exactly where they were when he was here, placed where he could see them from his desk. I have gone to see a couple of the holiday store windows, which are usually such a treat in New York City. But, it left me feeling empty and alone. I walked through the holiday markets around the city but felt sad, remembering how I rushed through them looking for something to bring Ben but not wanting to waste time because I had to get home to him. I have not gone to see the Rockefeller Center tree in all this time. These things didn’t feel fun and happy to me. They were painful reminders of my caregiving days and how Ben could not get outside to enjoy things with me and how I did not have time to myself. Last year I simply could not muster the enthusiasm to make a holiday card. I did take a photo of Disney, as I frequently do, and I emailed it to a few people, but I could not put on a happy face and pretend that I was feeling the holiday spirit.

This year feels different. I had to get a new tree- it’s purple, but Ben’s favorite ornaments still have their places of respect in tribute to him. Last weekend, on my way to meet a friend, I walked through one of the holiday markets- I was not terribly enthusiastic, but I also did not dread it. Yesterday, on my way home from school, I decided to go to Macy’s to see the windows. I was keenly aware of this change in my mindset. I also made the usual mental note that I am now able to make spur of the moment decisions to do things that I’d like to do, and although it didn’t exactly feel good, I did not feel the guilt that used to surround me whenever I did something that I was not able to do when I was caregiving or that I enjoyed with Ben. I still feel the loneliness, but it’s a feeling that I’ve integrated into my life that no longer keeps me from pushing forward.

Today, I took an “ugly sweater” cookie decorating class. Baking and decorating cookies is one of my favorite things to do. It’s like my therapy- usually a three-day epic event which thoroughly engages my attention and sense of whimsy. I’m happy that my friends love them. Ben delighted in watching me because it made me so happy and because his daughter was thrilled to get them. We carefully counted the number of each design, remembering how my grandma always counted the matzah balls she made because my dad would sneak into the kitchen to eat them. As I was walking to the class, I thought about how my life has changed. I can freely take classes now. I can feel the excitement of the holidays. Tomorrow, I am going to try to make time to see the Rockefeller Center tree. I am used to missing Ben, at the same time knowing that he is with me. I am more purposeful in my planning and more energetic. There are times when I get overwhelmed and I allow myself those moments of tears and loneliness. But, I am also able to enjoy activities and occasions and I welcome and embrace that joy, too. It’s a kind of emotional juggling act that I seem to be mastering.

The paths won’t be the ones I planned. Right now, I don’t have the purpose that I had as a caregiver. I don’t really know what awaits me, though I know that I would like to find love again and I would like to pursue my blog and pet business ideas. I know there will be bumps, and since I am a klutz, I don’t know how well I will navigate them. I have learned, however, that I will be okay. The good thing is that, as Walt said, I keep moving forward and discovering new things about myself and life.

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