New Year, New Directions?

ALS, Disney,Grief

Holiday Card 2015
A Loving Tribute to Ben

Aside from having a bad cold and cough during the holiday week, I found myself feeling glum. Ordinarily, I busy myself with taking a photo of Disney that I make into a holiday card and mail to friends and family. This year, I just couldn’t get into the spirit. I always loved making the holiday cards, but since Ben has been gone, making a holiday card has become an emotional and somewhat overwhelming endeavor. The first holidays came just a few months after Ben left, and, after much thought, I created a card that was a tribute to him, accompanied by the words to Auld Lang Syne, which is meaningful to me because it talks of remembering those we’ve loved and lost. Last year, I was torn about making a card, because I did not feel festive but felt that I should honor the tradition, and even send a message to others (and to myself) that I was starting to at least try to embrace life. In my mind, Ben had to be present in that card, so I chose the Disney song, “It’s a Small World,” which is my favorite song and a song and attraction at World Disney World that always made us happy. I included some of our favorite pictures from the attraction, all of which Ben took when he was well. It felt like he was helping to make the card. (click here to read last year’s New Year’s day post)

This year, I am still not sure if I felt like I should or if I genuinely wanted to keep the tradition of making the card, but I kept procrastinating. It’s the third holiday season without Ben and I didn’t feel like the card should specifically be a tribute to him. I suppose that a part of me thought that people would also find it strange, and maybe depressing, that I would continue to visibly include him in the card. On the other hand, I was heartsick at his not having a presence in the card.

Does grief keep finding new ways to shake up my efforts to forge ahead in life?

What I’ve realized is that grief gave me a sort of purpose- it was to share memories of Ben and keep him in everyone’s hearts, which I did when I made the other cards. I wholeheartedly believe that he is watching over me and I want him to know that I honor him in every step that I take. Making my first holiday card that was not a blatant, well thought out tribute to Ben and to us, from only Disney and me, made me feel alone and without purpose.  Of course, the memories are always there, and, as I put Disney’s pajamas on her for the picture, I remembered how Ben laughed and commiserated with Disney as the three of us posed for a photo in our matching pajamas.  I finally got a picture I liked and wrote a caption. But, this card came with confusion and conflicting emotions because it was not a card about Ben or us. It did not feel right, and yet it also felt appropriate.

Welcoming 2018

This experience brought to mind the lyrics from a beautiful song from Pocahontas II, called Where Do I Go From Here? (Written by Marty Panzer and Larry Grossman) 

But where do I go from here?
So many voices ringing in my ear
Which is the voice that I was meant to hear?
How will I know?
Where do I go from here?

My world has changed and so have I
I’ve learned to choose
And even learned to say goodbye

The path ahead’s so hard to see
It winds and bends but where it ends 
Depends on only me

In my heart I don’t feel part of so much I’ve known
Now it seems it’s time to start, 
A new life on my own

For so long, my purpose was taking care of Ben. It’s gone on to be sharing memories of him and of caregiving and grief, and that helps me sort through feelings and emotions while it offers insights and maybe, hopefully, comfort to other current and former caregivers. So, who am I without Ben and these experiences?

I have gotten back to life. I enjoy my time alone and with friends. I do surround myself with good memories, but I look forward, too. I even started online dating and, difficult as that is, I am trying to be optimistic that I will find love again. New Year’s Eve was never a big deal for Ben and me. We generally stayed in and I cooked a special meal, until he could not eat much anymore. Last year, I went to the movies and an early dinner with a friend, which was not joyous but also not sad. So why has this year gotten me down even more than the prior two years? I guess that trying to make a card with a simple festive greeting and without a message about Ben showed me that I have not yet come into my own.

Although I have taken steps towards a new life, it’s hard to face head on that although Ben is always in my heart, I am on my own with an identity independent of him, caregiving and grief. I have established routines and have become more accustomed to life without Ben, but I constantly think about and even talk to him. I’m doing things that I always loved to do, often seeing things through his eyes. I would never have thought that making a card would be such a glaring reminder that I am now doing things just as myself and not as part of the couple that was Ben and Abby. It’s not yet comfortable. I cannot anticipate waves of profound sadness and loneliness, so when they hit me they hit me hard. I have to let the tears fall as they will and I know that I will push through it.

I’m not sure where I go from here in life and love, though, in my Disney way, I am hopeful and optimistic. I hope that in this new year I continue to establish a balance between past, present and future. I read many things from those in grief who wonder where they should be in the grief process and if they are okay. I hope this helps those in grief see that grief is its own journey, experienced at our own paces, filled with memories, insights, reflections and learning that will ultimately propel us forward if and when we let them, when we are ready. It’s not easy, but I find comfort in knowing that Ben and the other loved ones I have lost are somehow guiding me.

I wish everyone a new year of love, laughter, peace, good memories and the creation of new ones, and, of course, good health.