Eleven Years- Always With Me

abby_admin ALS, Disney, Grief, Uncategorized 2 Comments

My Dear Ben,

Today marks eleven years since you left the earth. It is one of the days that remains difficult. Late last night I recalled our last night in Mount Sinai Hospital’s hospice unit. My memories remain vivid yet also surreal, as they were then. I awoke today feeling sad with the weight of the day. Dolly Parton died yesterday, and hearing talk of it as soon as I put the news on, while also summoning the energy to navigate this day, put me immediately in tears. But, I’m okay with tears.

Summer always carries the memories of your last summer. That has not changed. Having to proofread Pixie Dust For Caregivers: A Disney Fan’s Reflections on Caregiving, ALS, and Honoring Your Story brought all of the memories to the forefront. Still, I was reminded of how right Christopher Robin was when he assured Winnie the Pooh that, “If ever there’s a tomorrow when we’re not together, there’s something you must remember…You are braver than you believe and stronger than you seem and smarter than you think…. But the most important thing is, even if we’re apart, I’ll always be with you.”

I am able to immerse myself in life and the present while keeping you close in my heart. My dream of being a published author is coming true—the book will be released in about a month— and I am able to genuinely delight in that. You are the reason I will be a published author. This tangible product keeps you with me always. At the same time, reading my words about my caregiving experience and your battle with ALS conjured the sadness and frustration while highlighting that I have grown stronger and maybe a tiny bit braver. My emotions did, indeed, turn me Inside Out.

I had the wonderful opportunity to return to our treasured Vermont. This was another time that I took you with me while creating new memories with new friends who are fellow writers and my critique partners. I did talk about you and recall our adventures. It did feel bittersweet to be there without you, yet I felt comforted to be in this place that was special to us, and add a new dimension with other wonderful and supportive people. I did buy a little pirate ghosty ghost in the Weston Christmas Store because we so loved that store, we loved Halloween (I still do) and you loved pirates so much. I will never stop hurting for the time that ALS stole from you and from us. But, I know that you are with me. I am consoled by the feeling of your presence. I am also feeling a bit more confident and capable in my life.

I feel like I have reached a point where I embrace my life and accept that feelings of grief are just a part of it. You remain a huge part of who I am, as do my mom, dad, grandma and Ellie. I do like to be intentional when it comes to days like today. I already decided that next year, I will see the new Broadway show, Paddington: The Musical on my mom’s birthday to honor her love of that adorable little bear. I saw it in London last November in her honor, too. For the past few years, I have been on an Amtrak train on this day to honor your love of train rides and our many fun getaways, and I do think that suits my mood. This year, however, I spent the day here. I decided to spend time in Central Park, a place that we enjoyed and a place that has grown to be so important in my life. You were with me as I chose how to spend the day among our memories. I bought berries to bring to the turtles, and I let them know they were from you. I stopped to feed my buddy squirrels as I headed to a place we always enjoyed, the Central Park Zoo. My first stop was the Penguin House. I still have our penguin trinkets and I watched the cuties through your eyes. I also hung out watching the seals as we always did. In the Children’s Zoo, I fed the sheep and goats. You never quite understood how much I loved feeding the animals, but you always indulged me and we shared a lot of laughs. Animals make me so happy, so this visit was a way to conjure you and also give me peace of mind and joy on a difficult day.

I took myself to lunch at the diner you loved, where we had so many meals. I was keenly aware that rather than making me sad, it felt good to be there and to be able to acknowledge things that were ours, even though you’re not physically here. I guess that’s another shift in grief.

Finally, I settled in at home and watched Monsters, Inc. with your Sully plushy beside me. I wish I was as lucky as Sully and could find that little piece of the door that would bring you back to me.

Arranging these days allows me to feel close to you and to remind me of Christopher Robin’s quote. You’re always with me. I spent a lot of time feeling like I was keeping myself in a relationship that no longer existed because you’re not here anymore. I think it gave me a sense of security. I’m doing a better job of keeping you in my heart while accepting my life on my own. But, I miss you. I love you. I hope that you feel my love, not just on days like this, but every day. And I hope that wherever you are, you are eating, running, playing music, and doing everything that ALS took away from you. You are forever my loving grim grinning ghost.

All my love,

Your Minnie, Abby

This clip has the whole sweet conversation between Christopher Robin and Pooh, from Pooh’s Grand Adventure: The Search for Christopher Robin (1977), Walt Disney Television Animation

Not Your Typical International Kissing Day Thoughts

abby_admin ALS, Disney, Grief, Uncategorized 0 Comments

A PhotoPass photographer caught this moment in front of the Castle at Walt Disney World. It was actually the first time we returned after Ben’s ALS diagnosis in 2010

The narrator (Fairy Godmother) of Disney’s 2015, live-action Cinderella said, “Time passed, and pain turned to memory.” This is one of the Disney film quotes that always gives me pause. I can look back and say that after more than a decade, I still feel the pain of losing Ben. While pain has not turned to memory, there has been a gradual shift from being immersed in deep suffering and floundering, to embracing a wide range of memories of our life together, and also to accepting and even enjoying my “present”. 

Today, July 6, marks the eleventh anniversary of the day that Ben had a respiratory crisis and we ended up in the Emergency Room at Mount Sinai Medical Center. For me, this is the date when everything changed. The painful memories surrounding this day begin to surface with the end of June and the arrival of July.

I have learned not to have expectations about how I will feel on milestone dates, but this has remained a particularly difficult day. I woke up this morning, as I have each year, with vivid memories about how I woke up on this date eleven years ago and Ben said he could not breathe. I think of how we waited for the ambulance, not knowing what would happen. How ironic it is that today is International Kissing Day, because on that day he was connected to a ventilator and his mouth was covered with a Bipap mask. For the next few weeks, before he agreed to a tracheostomy, our way of kissing was to blink our eyes tight and then I would throw him a kiss- he couldn’t use his arms or hands to throw one back.

I remember that in the midst of the frenzy of an Emergency Room, it did not occur to me that I could lose Ben at that time. I was kept busy as the health care proxy and the only family member present. I emailed and texted his family and our friends and answered a lot of questions. I tried to stifle resentments towards his family, a few of whom had lots of questions, absurd suggestions and judgments but had never been there for him as his ALS was progressing. I was surrounded by people but felt very alone. I talked to Ben but had difficulty reading his lips through the mask. And he slept a lot, leaving me to my own thoughts about what would happen next. I shared all of this in a previous year’s post.

It’s an odd feeling that nobody else would even remember this date, and I wouldn’t expect them to. That does, however, underscore that when this crisis hit, it was just Ben and me. And, as awful as it was, I was there for Ben, he knew he could rely on me, and there was much love and trust. We may not have been a real Disney prince and princess, but the profound love and caring that we expressed throughout his experience with ALS gave special meaning to the song title So This is Love, from Disney’s original, animated Cinderella.

Today, I just want to think about Ben, and that day. I will watch Monsters Inc and think of how he loved Sully. This evening, I will host two online chat groups for Hope Loves Company, where children who are impacted by ALS because they have or lost a family member to the disease can informally hang out. It’s important to me to support caregivers, particularly young people. I might facilitate the groups, but the kids inspire me with their resilience, insight, and spirit.

Summer has never been my favorite season because I dislike warm weather, and now summer is filled with the memories of Ben’s last summer. This date may always be a difficult day. In my mind, it will always be thought of as the beginning of the end. I see all kinds of social media posts about International Kissing Day and I think that it was the first day when I couldn’t kiss Ben.

But, there is always pixie dust and Disney magic. This morning, I received an email from the Theme Park Press book designer of my soon-to-be-published book, Pixie Dust for Caregivers. I should see layouts this month. Later this month, one of my poems will be published by Little Thoughts Press, a magazine for and by children. This morning, I received a link to share where the issue can be preordered. If you would like to learn more about the issue and this wonderful magazine, click here.

Sorry Fairy Godmother, pain is not just a memory. Now, I find that the pain is in managing the memories in the context of the present conflicting emotions of joy and sadness (Inside Out is real!). Still, I like to think that Ben aligned the stars so that I would have these positive moments on what continues to be, after all these years, a rough one. Disney magic indeed. Ben, I hope that you know that I am thinking of you today and sending kisses, with love “to infinity and beyond.”

Walt Disney World, 2002
The pre-ALS days.

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Happy Birthday, My Mickey

abby_admin ALS, Disney, Grief, Uncategorized 0 Comments

Today, February 21, is Ben’s birthday. Yet another hard February day. I found myself resigned to the day rather than dreading how I would feel. I seem to find comfort in planning to spend the day immersed in the memories. I was able to spend a little time with a friend of ours, which was nice. It makes me happy when I know that Ben is remembered.

For the past few years, I have made a point of traveling on a train on what I call “Ben days.” This year the weather has been so precarious that I decided to stay home. I did miss having a little retreat. Last year, while on my little journey, I enjoyed writing, and I even wrote a poem about Ben that reflected on my train journeys. I’m reposting it here.

I began today by watching the video that I made for my Ben’s birthday post on the blog the year after he left the earth. So many happy memories, even though many photos reflect how Ben was changing as his ALS progressed. When I think back to starting this blog I remember how much time I spent creating these videos. I don’t think I realized how important the process was in coping with grief. It hurt to look through all of the photos, but the memories were what I had and they were everything. Also, Ben and I loved to master computer programs and I knew he would be very proud of my products.

Another “Ben day” tradition is to watch Ben’s favorite Disney films. I watched Monster’s Inc. Ben loved Sully so much. Sully was one of the first “people” we told about our engagement. He also made such a fuss over Ben when Ben was in the wheelchair. It was truly touching and adorable. I am always most moved by the scene in the film where Mike reconstructs Boo’s door and Sully provides that one piece he saved, which allows him to reunite with Boo. I wish I had that little piece of a door. It seems that these milestone days open the door, with the realization that my loved ones are not really there. Just the memories. They simply are not always enough. Especially in February, when that’s all I have.

I am no longer paralyzed on days like today, but February will likely always be a melancholy month filled with anniversaries of the loss of Ben, Daddy, Grandma, and my cat Disney. I have learned to coexist with grief and be intentional in dedicating the day to good memories and focused reflections. That feels right to me.  

Happy Birthday, My Mickey! I hope that you are eating birthday cake, playing music, and dancing- free from the constraints of ALS. No candle on a cake, but as always, the wish for a cure for ALS.  Love, Your Minnie