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The Things That Matter

There are so many things that conjure my loved ones and I hold onto those with much love and sentiment.  There is the Les Miserables sweatshirt my mom looked so cute in, along with her Paddington Bears and toy cars. I feel especially connected to my grandma when I use the rolling pins and cookie cutters that I used with her from the time I was a little girl. I hold dear the movie history book that my dad kept and updated with the death dates for the actors as they occurred. He was never interested in celebrities, so this always struck me as so odd but as endearingly funny and quirky as my dad. I love to look at his USMC cap and model of the F7 airplane he flew during the Korean War, as well as some of his books, including the book of dog breeds that we used to study when I was a girl. In my living room stands the curio cabinet that my great-uncle Davis made and my Tanta Rosie gave to me because I’d admired it since I was a young girl. Those are just some of the love-filled mementos I have of the past.

If you’ve been reading this blog, you also know that Ben and I loved to look at photos to revisit our days in Walt Disney World. I found web sites on which I could upload favorite photos and make a quilt, shower curtain and towel, so that he could always be surrounded by his favorite pictures and memories.  Now, those wonderful, magical times surround me.

Ben also had a huge and ever-growing collection of t-shirts, many of which I brought for him as little surprises. I could not part with them. I couldn’t keep that many t-shirts and wear them. I had them made into quilts for Ben’s daughter and for me. When I set mine out on the bed, it was emotional to think of what the t-shirts represented- the many Mickey’s Not-So-Scary Halloween Parties, places we visited, events we attended, and things he loved, like the Beatles. Now, it is a special feeling to wrap myself in those memories. For a while after he was gone, I continued to order t-shirts that I knew he would have loved. I’ve tried to curtail that, because without him here, they don’t bring the same joy, and I would soon need to make a new quilt!

Caregiving,Grief,ALS,Memories

A segment of the t-shirt quilt. So much nicer to wrap up in memories rather than leave t-shirts in a drawer.

The things that bring an unexpected sentimentality are the things that become most unnerving. Recently, it was Ben’s table, which was also his desk. He brought it with him when he moved into my apartment. I never liked it, and I tried to persuade him to let us get a new one. It was a somewhat beaten up, not terribly steady, unattractive folding table. He knew it was always on the verge of collapsing, but, it was comfortable for him and since he dealt so graciously with all of my dolls, how could I really argue?

Caregiving,Grief,ALS,Memories

This is Ben’s table waiting to be filled with cookie batter and lots of supplies!

Several months after he passed, I began to fix and redecorate the apartment. It felt too soon, but my tiny NYC apartment held many physical and emotional scars of ALS. I knew that it was a positive thing to do, but it also came with the guilt that making the changes, albeit necessary, might even slightly imply that I was happy he was not here and I could change things. I also wished that he could be here to enjoy it. I painted, recarpeted and got some new furniture. I also put up many pictures of Ben, continued to display his things and even framed one of his Beatles albums. He was a part of each decorating decision that I made and he remains very present here.

I thought it would be good to get a new table. I found a nice wood dining table that could be extended and I liked that idea because my intention was to start inviting people over. That was something we did not do when Ben was ill because he was self-conscious about having people see him and because the apartment was, frankly, a very cluttered disaster.

Given how much I disliked the table, I thought it would be easy to replace it. But, like the computer that sat on that table, it was like a lifeline to Ben. He sat at the table almost every day. I brought him to the table in the morning before I left for work, and brought him back to bed from the table each night. His little collection of Disney toys was on that table. He played around on the computer all day at that table. I fed him his meals at that table. I set his shaving things on that table as he taught me how to shave him (I can’t say I ever mastered it very well but Ben said I did pretty well). His birthday cakes and parties took place around that table. He looked at our Christmas tree from that table, and as I explained in a prior post, I placed his favorite ornaments on our tree so that he could see them from his chair at his table. Sometimes, after I put him to bed, I would decorate the table or place surprises for him that he would spot when he sat at the table. For example, one Halloween, I got him a Disney countdown calendar figurine and every morning, when he settled in at the table, he would see that I had moved the day closer to Halloween. The night before Halloween I put Halloween garlands and fake cobwebs all over his desk area. I also waited for him to go to bed to sit at the table and make my crafts, including making elaborate cards and gifts for him.  He knew there would be surprises and he loved to discover them.

Caregiving,Grief,ALS,Memories

Ben’s birthday, 2013, seated at his table. He loved peanut butter M&Ms but shortly after that photo was taken, he had to stop eating them.

Caregiving,Grief,ALS,Memories

Birthday cake, 2013, on his table.

There was a lot of history in that ugly table! I simply could not get rid of it. I decided to keep it, and to use it when I baked cookies and humentashen. I knew Ben would approve of that, because he loved when I baked and he even helped with the humentashen until ALS took the use of his hands. I folded the table and kept it behind my media cabinet. I placed his computer right on my new table and I continue to use it to play his music. I could never part with his computer. This Christmas, I put his fiber optic Disney tree in the same corner of the new table that he liked it to be on his table.

Caregiving,Grief,ALS,Memories

Holiday display on the new table, with Ben’s little Disney fiber optic tree in the same position that it had on his table.

On Christmas Eve, I took out Ben’s table to do my baking. Baking Christmas cookies gives me a lot of peace and I looked forward to doing this. As I started to set up the table, one of the legs broke off. I was devastated. In a panic, I got out my drill and tried to fix it. I took out my heavy duty glues, too. Nothing worked. I managed to secure the leg so that I could use the table anyway and just hoped that it would not collapse. I asked Ben’s friend to come over and look at the table. He did not seem too hopeful that it could be fixed but he could tell that I was heartbroken and said he could try to drill new holes. I was able to complete all of my baking and decorating, which was quite a relief. Ben would be delighted with these finished products.

Caregiving,Grief,ALS,Memories

The last batch of Santa cookies made and decorated on Ben’s table.

Caregiving,Grief,ALS,Memories

Chanukah cookies made on Ben’s table.

Caregiving,Grief,ALS,Memories

Mickey Mouse snowmen cookies. Also, the last ones made on Ben’s table.

Caregiving,Grief,ALS,Memories

The final assortment of cookies! My grandma and Ben would be proud!

On Wednesday, as I went to fold the table, the opposite leg broke off. I was utterly crushed. I realized that there was no way that the table could be repaired. Ben would not have been surprised. He knew the table was not in good shape but I think that, especially as the ALS progressed, he knew what was comfortable and manageable for him. I cried as I kept some of the nails and hardware and took the table outside to the curb. This eyesore of a table that I’d wanted to replace was the hardest thing to let go.

In caregiving and in grief, we are reminded to focus on memories that keep us connected to our loved ones and let us remember them as they were and as we were together. I’ve written about the wonderful memories that comfort me in the difficult times and memories of the ugliness of ALS. I am eternally grateful for the times that I could make my dad and Ben smile, or make their lives a little easier and more comfortable. Those moments are priceless reminders of the depth of the love we shared. The heirlooms and treasured objects also hold memories and affection. Then, there are the surprising things-the “stuff”- like Ben’s table, that touch my heart with the stories they tell. In love and loss, and caregiving and grief, all of these things matter.

Auld Lang Syne

January 1, 2017. I wish everyone a happy, healthy, and peaceful New Year. I’ve never been one to ring in a new year with lots of fanfare. Growing up, my family and I sometimes went to dinner and a movie, but celebrations were very understated and I liked it that way. With Ben, I loved to cook a fancy dinner and have a cozy night at home. Every beginning of a new year should be filled with promise. Should be.

After his ALS diagnosis, although we never really said it aloud, it felt like there was nothing good to look forward to. Being reminded of time passing is not a great feeling when dealing with a terminal illness.  There is no opportunity for a break when you’re a patient or a caregiver, so our routines were not altered during a holiday. I did want Ben to feel that things were somewhat festive, and I needed that, too. Decorating the apartment gave me a distraction but it also gave Ben a distraction, a change in his homebound environment, beauty to look at and whimsy. As his ALS progressed, there were no more fancy dinners, though we joked about my pureed creations. Our many Disney decorations surrounded us in beautiful memories. The ending of one year and beginning of another one came quietly and our only resolution could be to make the best of the time we had.

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.

 

In my previous post, I explained that Auld Lang Syne is very meaningful to me. For last year’s holiday card, I placed photos of Ben at his happiest and most vibrant around the words to that poem. I needed to see that and I wanted people to remember him laughing and enjoying life. I still find that this gives me more peace than sadness. And, in the moments that it does bring tears to look at the pictures and think about the times we will no longer have, that’s okay, too.

ALS, Disney,Grief

Holiday Card 2015
A Loving Tribute to Ben

On this New Year’s Eve, I did a bit of celebrating, which says to me that I am healing. Those feelings can be confusing, because my joy does not mean that I have forgotten Ben or any of my loved ones. Words are powerful, and I do not like healing to be described as “moving on,” because in my mind it means leaving things behind, and I have not left my loved ones behind. “Auld Lang Syne”  represents for me an opportunity to honor those I have lost and whom I miss, while I try to find my way in the present. I am very fortunate to have had these people in my life, to have felt their love and to have loved them. They have all helped to shape who I am. And so, it is with love, and joy, that I remember these special people and share some of their pictures. They will forever be with me in my heart, and will watch over and guide me as I take another step forward to welcome a 2017 that I hope will continue to find a better balance between grief and love, joy, peace, and laughter.

My mom and our Standard Schnauzer, Dulcie. My mom and I were practically attached at the hip and not a day goes by when I don’t think of her, even after nearly 25 years. Dulcie was the best and smartest girl and she is also missed very much!

My dad with our Miniature Schnauzer, Windy, at my Cornell graduation. Daddy liked to look serious, but he was quite the joker. Both of my parents instilled in me a tremendous love of dogs and animals.

(L-R) Great-uncle Louie, Great-aunt “Tanta” Rosie, Great-Aunt Lillian, Grandma Dora, Great-Uncle Larry. Mid-1980s. I adored them all.

Grandma doing my hair. She crocheted my dress. She was very talented! I get my creative streak from her.

(L-R) Great-Uncle Davis, cousin Garry, who, at age 94, passed away just one month before Ben), and Great-Aunt “Tanta” Rosie.

Happy-ish Holidays! Healing Happens

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!

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

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!”