Making a Memory

abby_admin ALS, Caregiver, Caregiving, Disney, Grief caregiving, Disney, grief, Memories, Walt Disney World 4 Comments

Film clip: The Parent Trap (1961) Walt Disney Productions

In this clip from original Walt Disney Productions The Parent Trap, Sharon- actually, Susan- returns home from camp and is meeting her grandfather for the first time (he, of course, doesn’t realize this). She wants to remember everything about him, including the way he smells.

This scene touches my heart each time I watch it (and when I watch the remake, too!). Memories do give me great comfort, despite the tears they bring. So many of my memories with Ben surround going to Disney films, Disney music, Disney stores and Walt Disney World.

After he was diagnosed with ALS, our trips to Walt Disney World (WDW) really became about reliving and making memories that we could always hold in our hearts. Every experience and every opportunity to take a photo became that much more significant. Those memories are what I have now- bittersweet, and sometimes not happy, but it was life and love.

As the ALS progressed, our trips to WDW became more complicated. By the time we took our last visit there, in July 2014, we were dealing with an additional caregiver, ambulettes to travel to and from the airport, assistance on the plane, an electric wheelchair, challenges with eating, and not being able to go on his favorites rides (The Haunted Mansion and Pirates of the Caribbean). Despite the challenges, Ben was determined to have an incredible time, and he did. I loved that about him.

I was fixated on planning a trip that neither of us would ever forget, filled with all kinds of surprises for Ben. For example, we took the Pirates and Pals Fireworks cruise where we could see the Magic Kingdom fireworks and he got to meet Captain Hook. I knew Ben (and I) would miss being there for Halloween, our favorite holiday and our favorite time to be at WDW, so I worked with the fantastic Disney Floral and Gifts team to surprise him with our hotel room all decorated for Halloween. I remember his face when we arrived outside of our room and there was a big banner with a pumpkin and blinking lights that he thought was a promotion for Halloween and he got so excited. He was completely blown away when I opened the door and it was like entering the Haunted Mansion, which Ben adored. I took tons of pictures and videos for him to enjoy. We also kept all the toys and decorations to decorate our home on Halloween, and I brought them to his room in the hospital to share good memories and Halloween.

I’m so grateful that we were able to relive memories and make new ones. Although I cannot deny that there are tears for the difficulties and ugliness that ALS brought, and for the times we won’t have anymore, I am so thankful to be able to remember him smiling and laughing and being my silly, romantic Ben. I also love the simple memories of that trip: Ben playing air guitar while the band played in the England pavilion at EPCOT, his trying on character hats and choosing t-shirts in the souvenir shops, our holding hands while I walked next to the electric wheelchair or as we watched the fireworks displays, his enjoying the freedom of getting around with the electric wheelchair. Though some people look at the pictures and see how he became very thin with very swollen feet, and that he was wheelchair-bound, I see and remember the joy on his face.

It was too painful for me to decorate last Halloween- Ben had only passed away in August and it was too soon. I do love the photos, and I hope that one day I will want to decorate again and remember the way that we enjoyed it. Maybe this year. I’ll let you know.

Make a memory. Make many. They might be hard to think about or look at in the beginning, but they will be there to embrace if you choose to.

August 29, 2016

“Time Passed and Pain Turned to Memory.” True?

abby_admin ALS, Disney, Grief caregiving, Cinderella, grief, Memories 3 Comments

The narrator says this in reference to Cinderella's grief over the loss of her mother. Cinderella © Disney 2015

Only a few days ago I posted a video slide show of favorite memories of Ben. One year is a significant marker of time for me and I was very uptight as I anticipated the sadness that I did indeed feel when the day arrived. I don’t know what I expected to happen after I hit that marker, but I woke up the next day feeling so sad. I still feel down. Time has passed but pain has not turned to memory. Both are still quite strong. So, this quote from the 2015 Disney “Cinderella,” which was so powerful to me when I heard it and still remains with me, gave me pause and I had to think about it.

I relish the happy memories and cannot shake the pain of the devastating ones. If pain turns to memory, does pain go away? Is memory really complete if it does not include the pain and the joy? Is it all a matter of time? I would think that having lost my mom, my dad and my grandma- that I would be prepared for the flow of emotions that come with grief. I still feel pain at their loss, though I admit the sharp pangs have changed. But, I think that being the daily caregiver for Ben, and seeing the excruciating challenges of ALS, left an indelible mark on who I am as a person and how I see the world. I am stronger and more resourceful than I ever thought I could be, and yet, I am as much of a crybaby as I ever was. I’ve always placed a high value on being compassionate, even if I don’t know that I showed it all the time. Ben and I also were shown a lot of compassion, and it hasn’t always come from places I expected. Through this experience maybe I have a more open mind and heart. But my heart has also been somewhat broken by the cruel nature of the disease and the turmoil it caused. Maybe time will temper all of these dramatic feelings but I feel like as time passes, pain is entwined in memory but it doesn’t turn into memory.

I’m not sure of what my expectations should be of myself and how I handle my grief after a year. Should I consider the expectations people have of me and how I handle my grief from this point forward? Should their expectations influence me? If so, even if I don’t feel very different all the time, should I act like the pain has just evolved into memory? Should I speak less about Ben? Should I let people see that I still have really sad moments? Should I stop looking back?

I can say that although the bad times are still ingrained in my mind, and I do get depressed, I also do feel a change within myself. I still feel the pain of losing Ben, but I can view that pain as part of sixteen years of so many memories with him, only the last six of which involve his life with ALS and mine as his caregiver. I feel a gradual shift from continuing to live within the pain of suffering and loss, to embracing the wide range of memories, and the feelings they bring, but also trying to define my new “present.” While I am struggling with frequent episodes of drifting back to sadness and dwelling on my memories- good and bad, I have also begun to at least see a “forward.” I have to fight the idea that moving forward is disrespecting Ben’s memory and our relationship. That is an uncomfortable feeling that I have to learn to accept and navigate. Pain, sadness, joy, anger- a bevy of feelings and emotions- are all part of cherished memories and I do have faith that over time they will continue to shape me and lead me towards a bright future.

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