November 28, 2016

‘Tis the Season to be Emotional

abby_admin ALS, Caregiving, Disney, Grief, Uncategorized ALS, caregiving, Christmas, Disney, grief 2 Comments

Thanksgiving has come and gone. My second Thanksgiving spent without Ben. My second holiday season now begun without Ben. I’m sad to say that I’m finding this year to be getting off to a very rocky start. I wasn’t expecting that. I guess I also wasn’t expecting to feel worse the day after the first anniversary of Ben’s “leaving,” as he would say (click here to read that post), so I guess I need to abandon my expectations.  Grief. If only it came with an instruction manual. I understand some of it, and can predict and gear up for bad days like anniversaries of various events.  But, when I’m unprepared, the sadness really shakes me.

I am grateful for so much, including having wonderful friends who include me with their families. But, I think that last year I went through motions and was either sad, numb, distracted, or any combination of those feelings. This year, I took the time to think about what I would like to do over the long holiday weekend, and I chose to decorate my apartment for the holidays and to get together with friends.

Thanksgiving is a family holiday, and I’ve lost my parents, closest relatives, and Ben. My aunt Eleanor has Alzheimer’s disease, and although she seems to recognize me as familiar and we relate very much as we always did, I’ve lost her, too. My friends are my family, and I am so fortunate for that, but it’s also been a harsh reality and an adjustment. I think it’s also part of the process of grief, and of life.

Last year, I set up the sparkly pink and silver tree that Ben got me a few years ago, when a real tree and the lights became too much to deal with, given his caregiving needs and our limited space. Ben always left decorating the tree to me, because he said he’d never seen anyone get so excited about decorating a tree. But, he would occasionally chime in on where he thought ornaments should be placed. I missed him while I was decorating, but I missed him no matter what I was doing. I didn’t get any new ornaments and kept everything as it had always been. I even put his favorite ornaments in the same places on the tree, where he was able to see them from his desk. I remember that the tree did not bring me a lot of joy, but it didn’t make me especially sad either. I was struggling with so many emotions at that time that the holidays were just one more emotional episode to add to my list.

This year, although I miss having a real tree, I felt like I wanted to keep the pink one again because it was a gift from Ben. I expected to set it up on Thanksgiving with our ornaments, most of which are from Walt Disney World. Last winter and spring, I repainted, recarpeted and got some new furniture and I was actually looking forward to seeing my holiday decorations in my “new” setting. It didn’t turn out to be the positive experience I thought it would be. Instead, I’m feeling down and defeated because decorating has been a laborious and sad process. The bride and groom Mickey and Minnie ornaments that we got when we became engaged just reminded me of a happily ever after that didn’t happen as planned. On the other hand, I still love to look at the photo ornaments that we had made after each trip. I can see the way he changed over the 6 years that his ALS progressed, and yet I also feel so grateful that we could make those trips after his diagnosis and that we are so happy in each photo. And, I remember how we pored through photos to pick the ones that would become ornaments.

Again, I placed his favorite ornaments on the tree where he would have been able to see them from his desk. It’s where they belong.  I did get some new ornaments in London. I thought they would be nice, new additions to reflect a favorite place and new things in my life. But, when I placed them on the tree, I immediately felt that they didn’t belong. They interfere with my memory of what is still, in my mind, our tree.  My tree is a wonderful visual representation of my life- the wonderful memories of times with Ben meshed with the addition of new memories I’ve created as I’ve taken my first baby steps on a new path. By including my visit to London, which was a big step for me (click here for that post) I’ve also shown that I’ve made progress in my grief and my life. However, I did not anticipate that I would also see a jarring clash of past and present. I spent so much time trying to keep things the same- even continuing to arrange things for Ben the way I used to- but things are not the same. The beautiful ornaments that I found in London change what I seem to want to keep frozen in time, as if Ben is still here. I did not realize that until I saw all the ornaments hanging on the tree.

This year, I feel sharply the pain and the loss, while I’ve also accepted that I need to shape a life. It’s a difficult balance, and maybe that’s why this year is harder. I have heard that sometimes the second year is harder but I don’t think there is a steadfast rule. That’s the problem with grief. There is not a one size fits all way to experience it. Last year everything was a mess. This year, just as I felt I’ve made some progress in adjusting to life, I was caught off-guard with tears and loneliness when I was doing something I looked forward to doing.

I wrote this blog post because I thought that sharing my own experience might help other people in grief and struggling with not knowing how to handle the holidays or where they belong. Maybe you can relate or maybe this is not your experience. I do think that part of grief is accepting that there are going to be good and bad days. I am grateful that I do have more good days now. My very whimsical tree still shouts a love of Ben and our memories and love of Disney. I have faith that as the season progresses and I continue to adjust to my tree, and, beyond the holidays, my life, that I will find a balance that respects my memories and traditions but also welcomes new ones.

Feel free to share your experiences or ideas or advice in the comments section below.