Grief

Carl’s First Date- Adventures in Life Amidst Grief

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This ornament has such meaning for me. It holds all the dreams we had for the future, that I now encapsulate in my heart

Fall was our favorite season. Not only did Ben and I love the colorful foliage, but we loved to go to Walt Disney World for Halloween, which was also around my birthday. This season remains my favorite- sweater weather, pumpkins, and beautiful colors- yet it is also bittersweet, and sometimes even melancholy. Eight years after losing Ben, I acknowledge the darkness, but I firmly put one foot in front of the other to live in the present, while carrying in my heart the love and memories of the past and envisioning and shaping my future.

It stands to reason that I was very moved by the recent Pixar episode of Dug’s Days, called Carl’s Date. Dug’s Days is a series (on Disney+) that follows the lovable dog from UP and his human, Carl, the widower who grieves his wife, Ellie. In this episode, a woman calls Carl and asks him out on a date. Carl accepts the invitation, but after he hangs up the phone, he is hit with the revelation that this is going to be a date. His reaction is, “This is very, very bad.”  He goes to Ellie’s photo and apologizes. I totally get that. I freely admit that I talk to Ben all the time. His photo is my laptop wallpaper, and I often speak to him there, and say goodnight each night.

Two years after Ben passed away, I tried my hand at online dating and had that same feeling that this was very bad. The first date I went on felt completely wrong. Truth be told, I never enjoyed or was  especially good at dating. Ben often teased me that I did not know how to flirt and did not seem to recognize when someone was flirting with me. I left online dating and have not pursued meeting anyone, despite saying that I would like to. So, here I am.

I am pleased with the interesting, loving, and exciting things I have done as I have reshaped my life. I have created many new memories. I have found a stronger voice, for myself and as an advocate for caregivers, even on behalf of my students. Lately, I am also giving a lot of thought about how and where to spend my life in retirement. I have been actively writing and studying writing, with manuscripts of a caregiving memoir and picture books that I plan to have published. I also like to envision my future being spent with someone special. However, I am reluctant to delve into that territory. I completely relate to Carl’s lack of comfort and feeling like I would have to apologize to, or reason it through, with Ben.

As Carl says, “I don’t know how to date. What do I do?” Dug, in his adorable and compassionate way, suggests things like, “Bring her a toy.” I had to laugh, because for me, this is perfect advice! To survey my home is to see a record of Ben’s and my relationship, which was punctuated with oh so many plush and other Disney toys. Bringing me a toy went very far for Ben in our courtship, as our first dates always included a visit to a Disney Store.

Along those lines, Carl tries to look younger, even dying his hair, and Dug does not recognize him. Dug asks, “Why are you not you?” It is daunting to put myself out there again, and to be judged for my age, my looks, my experiences. I suppose I must keep reminding myself that everyone has their assets, liabilities, and baggage.

When I think about bringing new romantic love into my life, I sometimes get caught up in the grief, remembering how Ben would often point out elderly couples holding hands and say that it would be us one day. We were cheated of that. Does it betray Ben to think that indeed, it would be lovely to age while holding hands with a new and lasting love? Most people would say it does not. Intellect tells me they are correct. Alas, the heart does not always agree with the mind.

Before Carl finally departs for his first date, he talks again to Ellie and says, “I guess this is a new kind of adventure for both of us. Just know you’ll always be my girl.” I think that I am ready to have that conversation with Ben. I am still unclear about how to propel that adventure. I loved that Dug joined Carl on his date. I imagine that Ben will be with me, too. He used to joke that he would haunt me if I ever met someone. In truth, I am hoping he’ll come along as a grim, grinning ghost.

We loved to stand here, on Main Street, and look at all the Halloween decorations.

National Grief Awareness Day- What Is Happily Ever After?

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ALS,Caregiving,Grief,Walt Disney World, Disney
My silly Ben with his buddy, Buzz.

Today is National Grief Awareness Day. Of course, for anyone experiencing grief, there is daily awareness, adjusting, and coping. Grief is usually top of mind, and, at least for me, especially in the early days of grief, in those moments that it was not my driving thought, there was guilt to bring me right back to grief.

A few days ago, I posted about the eighth anniversary of Ben’s leaving this world. I posted a photo that I love of Ben in his Buzz Lightyear shirt and holding a little Buzz toy. I am posting it again here. In the photo, Ben is also wearing a button that says “Happily Ever After.” We got those buttons during a visit to Walt Disney World after Ben’s ALS diagnosis. We had no idea how long our happily ever after would be. We tried not to dwell on that.

Since I posted the photo, I have been thinking about how I reconcile Ben’s and my happy ending. Was it really happy? We had to make it feel so. And we did, especially at Walt Disney World. In the depths of grief, I often thought about that. I still do. The ending was far too soon, but there was a lot of joy and love, even in the troubled times. Life was not fair to Ben. It was not fair to us. Still, I am here. Sometimes I am lonely, sometimes I feel very alone. I try to focus on how we filled Ben’s years with ALS with as much love and whimsy as we could. I made sure that he was surrounded by so much love and music as he left. As devastating as it was, the day he left was also beautiful, and I am proud of that. Now, the grief is a result of tremendous love that I was fortunate to experience.

Grief is tricky. It ebbs and flows. It is unpredictable. There are obvious setbacks and sharp pangs- milestone dates, holidays, and special occasions. At least we can brace for those. It is the unexpected things that set me on a downward spiral. Watching a film that has a scene with a loving mother, father, or grandmother always brings me to tears. Ironically, my tears turned to laughter when Ben, knowing exactly what would make me cry, would hand me the tissue he knew I would need without saying a word. Random events, things in stores, sightings, and anything that might pop up can bring a mix of warm feelings about loving memories and profound sadness. I have come to welcome all the feelings because I treasure the memories of my loved ones.

I co-exist with grief, but I have returned to the land of the living. I freely acknowledge that I still deeply feel the impact of grief in many ways, anticipated and unexpected, and that acceptance helps me to go with the flow and embrace the span of my emotions. Being comfortable with my feelings and reactions to grief has also taught me to be a bit guarded around people who tell me how I “should” feel and what I “have to” do to cope with grief.

Today seemed a good day to share these thoughts. I hope that when people understand that everyone processes grief in their own way and at their own pace, there will be less judgment and more compassion. Grief can be managed on our own, with the help of our loved ones, and/or through support groups or therapy. Most important, our feelings are okay, and they are our own, just as were our relationships with those we loved and lost.

#NationalGriefAwarenessDay

Eight Years- Love Is A Song That Never Ends

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Walt Disney World, Halloween
Ben and I at Walt Disney World, Halloween 2011. Good memories are always a comfort.

My Dear Ben,

Today is eight years. I miss you. Once again, as has happened every year since you left this earth, I replayed in my mind your last day. It still leaves me shaken and in tears. Once again, I was purposeful in deciding how I would spend today. I am returning from Binghamton, New York, where I spent a lovely few days visiting Dorie and Damian. Yes, I spoke of you. I was also accompanied by your baby Sully and my baby Eeyore. I took Amtrak and chose to return today. After all, you loved the train so much. We had such nice getaways via Amtrak. So here I am.

It is important to me to plan this milestone day in ways that honor you and our memories. As I glance out at the beautiful scenery, I like remembering how you enjoyed even the longest train rides to Vermont or Connecticut. I have been revisiting all of my blog posts from this date and listening to our favorite Disney theme park music through my headphones. I observe that in the first couple of years, I spent this day trying to sort through my emotions and come to terms with the grief I felt for you and for my dad. I realize that when I lost you, I was also deeply grieving the loss of my dad. I see that I have come to co-exist better with grief and I give myself permission to cry, or not. I still cannot predict how the most mundane thing will set me back. Today is hardly an ordinary day, and there have been tears, so, thankfully, I have a seat all to myself. At the same time, I am grateful to be on the train knowing that you are here with me as I think about you, us, and my life now. I think that you would love that I am using my new iPad on the train. Actually, it was very difficult for me to choose and purchase this iPad because technology was the thing that you always did. You taught me well, though. I had the skills to research devices. I am thrilled with all that I can do with my iPad, and especially delighted that my writing this while on an Amtrak train would make you happy and proud.

Ben’s baby Sully and my baby Eeyore are my travel companions now.

I think about how I spent this day a couple of years ago at my first Bruce Springsteen concert. He talked about his concerts as a time to visit with the ghosts of the loved ones he has lost. I guess milestone dates like this are my time to devote to visiting with you, even though you often send me signs that you are with me. I am certain that the visit I had from a cardinal in Central Park last week was to comfort and encourage me in anticipation of today. I know you make these things happen. You did say that you would be a grim, grinning ghost!

I wish we could have been on a getaway together. I will always be saddened that you were cheated out of so much of life and that we were cheated out of time together because of ALS. The song One Dance always makes me cry because it was the song that I listened to one evening after I returned from visiting you that forced me to face that you were never going to come home. Although lyrics do that to me, I am grateful for music that comforts me and encapsulates my feelings. Music is also significant because you loved it so much. Please know that I take you with me everywhere I go. You are a part of who I am.

I have not yet decided which of your favorite Disney films I will watch today. No matter what, today may be the day that you left the earth, but it will forever more be a day that your spirit is especially honored and celebrated with so much love. Most resonant with me is that Love Is A Song That Never Ends, from the song of that title from Bambi. Pangs of grief ebb and flow, but the love I feel for you is consistent.

I love you and miss you every day,

Your Minnie, Abby

Ben was doing his best Ricky Ricardo impression. 2007

Finding the Pixie Dust in Difficult Milestone Dates

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ALS,Walt Disney World
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

Today, July 6, marks the eighth 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 simply- or maybe not so simply- the date when everything changed. I have learned not to have expectations about how I will feel on these milestone dates, but it has remained a particularly difficult day. Even after all this time, I still wake up dwelling on events that occurred on that morning, when 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.

In a post from a previous year (click here to read it) I recalled the details of that time. For a few years, I needed to rehash every one of those moments on this day, in particular. It was part of the way I processed grief and felt that I was demonstrating my loyalty to and love for Ben. I still struggle with that, but today I realized that I am finding a better balance between recalling memories and creating new ones. I do look for signs that Ben is with me and that he is okay with how I am living my life. I often ask him for signs.

I made plans to see one of my very favorite singers- Liz Callaway- at one of my favorite venues in New York City- 54 Below. I have loved Liz Callaway’s voice since the first time I saw her in the Broadway show Baby in the 1980s. Her voice is my go-to if I’m feeling happy, if I need a good cry or just want to get lost in beautiful tunes. It still feels a little uncomfortable to plan to do something where I will enjoy myself on a day that is definitely not enjoyable. But, as I have explained, I have begun to push myself and embrace however I feel. I actually went by myself, and although this highlighted my loneliness and aloneness, I liked the idea that I could just listen and relate to the music without being social or bringing anyone else into my thoughts. I don’t want to hear from anyone the cliches that I should keep living, that I should distract myself, or that Ben would want me to be happy. Sure, it’s all true, but it doesn’t matter.

As I said, I look for signs that Ben is with me and that I am making good choices that Ben would approve. Liz gave me several at this concert of “Screen Gems.” She began with “When You Wish Upon a Star.” A beautiful Disney song and one I have blogged about! I knew I was in the right place and Ben was right there with me. Liz also sang “Singin’ in the Rain,” which conjured such fun memories. Ben and I loved that film and it was one of the first two DVDs he gave me when he gifted me my first DVD player when we were dating. Ben loved to imitate Lina Lamont, saying “And I caaaan’t stand ‘em,” whenever I would complain about someone. If you haven’t seen the film, or it’s been a while, please treat yourself! Surprisingly, she sang a song that I love, from one of my favorite films- “It Might Be You” from Tootsie. Ben knew that it was my number one film when I needed to cheer up and it always made him laugh that I could even hum the score and would start laughing uncontrollably before the funny lines were even said, also saying them along with the film. It made him laugh that my dad and I made each other laugh quoting the film. I was happy to learn that Liz and her husband considered the tune “their” song. Another gorgeous song she sang was “The Place Where The Lost Things Go” from Mary Poppins Returns. That song, and the film, were very meaningful and poignant for me, as they were for Liz. She talked about the loss of her mom, which touched my heart, particularly emotional now because my mom’s birthday would be July 8. After I saw the film for the first time, I wrote a blog post about this song, which you can read by clicking here.

There was a lot of other beautiful music, laughter, joy and memories. In fact, Liz sang “The Way We Were,” evoking all I was thinking about the many memories that live in my heart.

As the happy, bittersweet and sad memories played in my head while I enjoyed the music, I realized that I was actually making a new memory by going to the concert. I feel the comfort of Ben when music- one of his true passions- brings up a memory of our relationship. Disney will always be ours. Ben knew how much I loved Liz Callaway and I know that he would be happy that this evening, I found peace in her music. The past was with me in my heart, but I am living in the present. As I see it, that’s a lot of pixie dust.

I miss and love you every day, Ben.

Thinking about ALS and Independence on July 4th

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Today, here in America, we celebrate Independence Day. In our challenging political climate, I cannot help but reflect on how our independence seems so fragile. I think about my dad on holidays such as these, and how he, the proud Marine, lamented that less and less families displayed a flag. As much as I miss him, I am relieved that he is not living through these times because I firmly believe that it would make him physically ill. He would be worried about my future, but at least now he is watching over me.

Daddy loved to visit the Cradle of Aviation museum and relive his USMC days.

I also can’t help but think of independence as it relates to ALS. It was on July 4, 1939, now known as Lou Gehrig Appreciation Day, that the renowned Yankee player stated at Yankee Stadium: “For the past two weeks you have been reading about a bad break. Yet today I consider myself the luckiest man on the face of the earth.” I think I will always be in awe of his grace and dignity. Of course, I saw it in Ben, too.

ALS,Lou Gehrig,Yankees

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that ultimately results in the loss of voluntary muscle action. Patients are affected differently in terms of progression, but people may lose the ability to speak, eat, move and breathe in any order of events. Ben’s initial symptoms were weakness in his legs and lack of balance. Next, he struggled with the use of his arms and hands, then his ability to chew and swallow. His speech was impaired though he did not lose it until he had a tracheostomy, and he got a feeding tube at the same time.

Imagine the loss of all of those abilities that we take for granted. The Project ALS Don’t Talk-a-Thon underscores physical speech while calling attention to its dramatic impact of a loss of self-expression on our psyches. People with ALS cannot independently take care of daily life activities. That is a physical and emotional struggle. I was always struck by Ben’s sense of humor and determination to devise strategies for managing on his own. He was quick to purchase things like adaptive zipper pulls and computer accessories that allowed him to function at least somewhat independently. He loved his scooter and electric wheelchair because they gave him the freedom to get around and be outside. As he lost dexterity in his hands, it became more difficult for him to steer, but he could be out and about.  He tried hard to avoid, for as long as possible, his loss of independence.

July 2014 Walt Disney World

As Ben’s caregiver, as he became increasingly dependent on me, I, too, lost independence. This was an emotional battle for both of us. Even within couples and families, each person maintains a certain level of independence. Ben and I lost that independence, albeit in different ways. I witnessed Ben’s struggle and was consumed with trying to accommodate his efforts to maintain some level of independence. In the process, I compromised my own independence. Ben and I were dependent on each other in this world in which our relationship was shifting beyond our control and we desperately wanted to maintain some semblance of who we were at our core, before ALS. After I lost Ben, I was frequently told that it was good that I could now reclaim my freedom.

For a long time, I could relate to Megara from Hercules, who said, “I’m a damsel, I’m in distress, I can handle this. Have a nice day.” Sometimes, I feigned independence and being “fine”  to try to convince others that I was okay, either for their peace of mind, because I did not want to confront their judgments and unsolicited advice. Sometimes, it was to convince myself. I owned my pain- I still do- but I have also learned to be unapologetic for my timetable and ways of processing grief. Independence originally felt like loneliness. It felt like I had no purpose, and I did not want to be my own purpose. Only now, nearly eight years later, am I more comfortable with the concept of independence. My experience left me with some battle scars, but it also left me with a tremendous appreciation of and perspective on independence and to support others who struggle with this. I blog, volunteer and do freelance consulting to maintain my deep connection to people who are experiencing ALS, as patients or caregivers. I am writing a memoir and workbook for caregivers and introducing in my school small initiatives to assist students who are family caregivers. Although Megara used her independence as a way to fend off people and not admit that she was vulnerable, I feel that embracing my independence has made me more able to communicate, admit when I need help, and build a new loving relationship. The challenge is finding the perfectly imperfect prince!

Walt Disney said that “Mickey Mouse is, to me, a symbol of independence.”This was said in the context of the success that it brought him and his company, and the freedom to pursue his dreams. “Independence” is vital to our existence in many literal and figurative ways. On Independence Day, we honor this country and its founding principles. Let’s be grateful for independence. Let us take this time to honor and support those who struggle with independence. Let’s fight to preserve those values that are currently under attack and being chipped away and could potentially impact on the medical care and research that strives to help make ALS more manageable and, ultimately, to eradicate this cruel disease. In my Disney way, I continue to wish for and dream about a cure for ALS and all other diseases.

Wishing well at Walt Disney World July 2014

Happy and Hopeful Independence Day.

Tinker Bell and I wish everyone a happy and hopeful Independence Day

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