December 25, 2016

Happy-ish Holidays! Healing Happens

abby_admin ALS, Disney, Grief, Uncategorized ALS, caregiving, Chanukah, Christmas, Disney, grief, Holidays 1 Comment

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

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!

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.

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!