ALS

Thanksgiving, Gratitude, And What Does It All Mean?

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Yesterday was Thanksgiving. Of course, I always take comfort in Disney, so I try to heed the advice of Walt Disney who said, “The more you are in a state of gratitude, the more you will attract things to be grateful for.”  I have really tried to embrace that attitude and, for the most part, it helps me. I also give myself permission to acknowledge the difficult moments and not force myself to deny or spin those moments.

The truth is that Thanksgiving is a bittersweet holiday for me. Yesterday, I awoke teary, thinking about the family I have lost. These were the people to whom I was closest. While I am indeed grateful to be included in the plans of my friends, I cannot escape the feeling of aloneness. Though I have learned to coexist with grief, this is one of those days when I cannot fight the tears.

I think about my last Thanksgiving with my dad, spent in the hospital, where I schlepped a full turkey dinner that he ate, mostly, to make me feel better because I had been crying and pleading with him to eat and get stronger. My last Thanksgiving with Ben was melancholy because he was understandably down about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. Although it was easy to lose sight of it at the time, we did have things for which to be thankful. Being able to feel and express gratitude for each other was indeed a superpower because it gave us perspective to see the love that was there, and even to have some laughs. The love in those memories continues to warm my heart, despite the lingering sadness.

I think of my first Thanksgivings without Ben. It is my good fortune to have friends who included me in their Thanksgiving plans. I love my friends and spending time with them, and I sincerely appreciated the invitations, but the feeling of aloneness hovered. I returned to my apartment from these occasions in tears, weighed down by the unhappiness of not having any close family anymore and not knowing where I really belonged. At this time, my aunt Eleanor’s Alzheimer’s disease had also progressed to a point where I had lost the person I knew and each visit with her was yet another stinging reminder of my loss of family.

After a couple of greatly appreciated but painful Thanksgivings, one year, I decided to ignore the holiday, declining invitations and staying at home. It did not feel good either. But hey, I tried. Even when I have an epic fail as I did that holiday, I always pat myself on the back for striving to reshape my life and address the areas that are especially troubling to me.

This year, I originally planned to travel to London to completely avoid the discomfort of Thanksgiving and immerse myself in one of my favorite places, visiting people I love, too. For a couple of reasons- all positive and optimistic, by the way- I decided to postpone my trip. Still, it left me here with my discomfort. Who knows? I might have felt discomfort in London, too, knowing that I went away because I did not especially want or need to be home. I clearly miss the dependable comfort of family. Maybe, one day I will find it again. Maybe, being in a state of gratitude will help to manifest it. Too much of the touchy-feely laws of attraction stuff? Maybe. Or, maybe not!

As I said, I do have wonderful friends, and yesterday, I spent a lovely Thanksgiving evening with them. Again, I returned home feeling a mix of emotions. I let myself feel the heaviness of grief and missing my loved ones. I also let myself feel content that I did enjoy my time with dear friends. Being honest with my feelings- the positive and the negative- helps me to reflect honestly on gratitude and the spirit of Thanksgiving. I believe that it is in my acceptance of the bad moments, or days, that I began to understand what Walt meant by being in a state of gratitude. I make a practice of acknowledging gratitude, but I do not force myself to suppress my emotions.

In the 1960 Walt Disney Productions film Pollyana, Pollyanna describes the “Glad Game.” This was a game that Pollyana’s father taught her to deal with disappointment, in which you turn every tough situation around and think about something you are glad about regarding that situation. As time has passed, I have learned that being “in a state of gratitude” is not to naively play the Glad Game (click for more). It is not to ignore the bad experiences or diminish their impact, but, instead, to draw upon the especially important superpower of perspective. I have a good cry when I need to, or when something triggers it, but I also acknowledge and welcome experiences or insights into those tough times that compel gratitude.

For me, I struggle with a lack of confidence, and I want to frame my gratitude list this year in the context of achievements, so I can document and hopefully clearly see growth.

  • I have said it before, but can never say enough, that I am grateful for my friends, who have shown me such kindness, generosity, compassion, and encouragement. I am grateful that I emerged from the darker days of grief to be able to enjoy creating new memories with them.
  • I am grateful for my love of animals, as they are often more intuitive and genuine than humans. And, they completely delight me! Doing animal encounters and interacting with animals gives me such a sense of fulfillment. It connects me to my dad because he also deeply loved animals. I did plan to do a penguin encounter with Ben, but a winter storm made travel in an ambulette and with his wheelchair too daunting. I did feel guilty doing my first penguin encounter without Ben. But, I have learned that I take Ben everywhere with me, and even when that is not enough, it is something. For this, too, I am grateful.
  • I am grateful to be working with Hope Loves Company, facilitating online “hangouts” for kids who have a family member with ALS, leading crafts workshops at the organization’s online camp event, and participating in the development of new endeavors. I am sorry to meet these young people at this devastating time in their lives, but grateful when I can bring them some laughs, maybe some insight, and an opportunity to socialize with other young people who share the experience of ALS in their families.
  • I originally began a club in my school intended for students who are caregivers for ill family members or even helping to raise their siblings. It has shaped up to be a club of caring, and somewhat shy, kids who want to find themselves and support others in school, in the local and global community. I am grateful that my club has worked to raise awareness in our school about student family caregivers and their struggles. We have conducted events for November’s National Caregivers Month. I have also been leading professional development sessions for teachers and staff that focus on addressing the needs of student family caregivers. I am grateful and proud to have made caregiving a part of our school’s dialogue.
  • I am grateful to find comfort in the arts and in my creative endeavors. Blogging has been tremendously helpful, and I am grateful to know that readers find comfort in my words and I am thankful to have connected with many people.
  • I am grateful to have been working diligently on my writing. I take classes and joined writing groups to help hone my skills and learn about the publishing world. I have a caregiving book and picture books in progress. I mustered the confidence to share drafts with beta readers and have gotten positive feedback and constructive criticism. I am hopeful and optimistic about being a published author.
  • I am grateful to Walt Disney and all he created for providing me with entertainment, inspiration, motivation, joy, and opportunities to reflect and sort through my feelings. I am grateful to believe that wishes can come true and that there will one day be a cure for ALS and all devastating and terminal diseases. I am grateful for my sense of whimsy and belief that if you wish and dream enough, your wish will come true. It lets me know that I will have even more to be grateful for next year!

There are and there will likely continue to be setbacks and I remain consumed with feelings of wanting to be respectful to Ben’s memory and to make my dad, mom, and grandma proud. My memories will accompany and guide me on my journey and will always be a part of me, and that gives me great comfort and peace. And, I keep reminding myself of what Christopher Robin said to Pooh: “You are braver than you believe, stronger than you seem and smarter than you think.” I know that I will be okay because I have the superpower of gratitude that allows me to embrace all my emotions and seek a balance between positive and negative moments and thoughts.

Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief. I always welcome you to share your own in the comments.

With all good wishes,

Abby

Wishing Well at Walt Disney World July 2014

Ten Things I Learned About Caregiving From Mary Poppins

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Since today, October 1, marks the birthday of Julie Andrews, I will devote this post to Mary Poppins, the consummate nanny who taught me many things about caregiving. “Mary Poppins” was the first movie I saw in a theater and it remains a favorite, as does Julie Andrews.

A kind yet stern and always magical nanny, Mary Poppins added whimsy to life while addressing all of its practicalities and mishaps. She got Jane and Michael Banks to use their imaginations and see beyond the confines of their nursery.  They were safe in her care, learned the importance of rules but also how to challenge them, and, because she knew just how to step in, they built and strengthened relationship with their father. She knew how to meet the needs of the Banks family better than they did. Now that’s what I call a great caregiver!

Here are ten lessons about caregiving that I learned from Mary Poppins:

  1. “In every job that must be done there is an element of fun.”
Mary Poppins 3

There were days where there was nothing fun in the actual tasks required in Ben’s care due to ALS. But, those silly moments that made us laugh amidst the sadness are the ones that still stand out.

  1. “Worrying won’t help anyone.”
Mary Poppins 4

Even as a worrier, I know it’s true. It doesn’t help. But, if it helps you to picture worse case scenarios and create plans if necessary, go for it. Just don’t dwell! Trust Mary Poppins. It doesn’t help.

  1. “Just a spoonful of sugar helps the medicine go down, in the most delightful way!” 

Lyrics to live by! I was there for a reason, and that reason was love and compassion. There’s the sugar. It made the awful, embarrassing tasks “swallowable.”

Click to play:

  1. “Never judge things by their appearance…even carpetbags. I’m sure I never do.”
Mary Poppins 7

Because a person needs a caregiver does not mean they become irrelevant. When people would come to see Ben and talk to me as if he wasn’t there, I would redirect them to include him in the conversation, even if I had to explain what he was saying as his speech became more impaired. His brain was still very active. He mattered. I did not let anyone make assumptions about his capabilities or ideas. Always let the person know they matter. Because they do.

The same goes for people who judged our relationship. Whatever people thought of me, or of Ben, and our caregiving situation, we were the only two who were actually in our relationship for sixteen years. In any caregiving situation, particularly within a family, there are dynamics that only those involved can really understand. You can have opinions, but tread gingerly when it comes to offering advice, even if it is requested.

  1. Sometimes a little thing can be quite important.
Mary Poppins 1

A smile, a thank you, a kiss, remembering something special. I’ve written about how Ben and my relationship felt like it shifted from husband and wife to patient and caregiver. It was in little things like holding hands, sharing memories, or “inside jokes” that we were brought back to who we really were as a couple before ALS.

  1. Best foot forward. Spit spot.
Mary Poppins 6

It’s all you can do. And, when you’re dealing with a lot of crises, you can’t take a lot of time to ponder. As I’ve said in prior posts, I often had to “just keep swimming,” even though I belly-flopped, but I always put my best foot (or fin?) forward!

  1. Let’s go fly a kite

All at once you’re lighter than air
You can dance on the breeze
Over houses and trees
With your fist holding tight
To the string of your kite

Mary Poppins 5

OK, we couldn’t really do that. But, we had to maintain a sense of fantasy and whimsy that could take us outside of our reality, at least for a few moments. The trips we took to Walt Disney World were always magical, and they took on a special meaning after his diagnosis. Those trips were the kite that took us briefly away from reality. Now, I can look back on those memories with gratitude and a bittersweet delight.

  1. It’s a jolly ‘oliday with Mary

Oh, it’s a jolly ‘oliday with Mary
Mary makes your ‘eart so light!
When the day is gray and ordinary
Mary makes the sun shine bright!
Mary Poppins 2

Ben teased me that I loved to use the word “whimsical.” But, I enjoyed bringing whimsy into his homebound life. I often arrived home with shopping bags of “treats”- new tshirts for his collection, a gadget that I thought might help him, a new ingredient for our culinary adventures into pureed concoctions. It always made him smile and laugh. That made the “sun shine bright” for both of us!

  1. Supercalifragilisticexpialidocius

It’s a great word. Covers a lot of territory. It especially made me chuckle to myself when a bevy of not such nice words were going through my head!  Try it.

Click to play:

  1. “Mary Poppins. Practically perfect in every way.”
Mary Poppins 8

I tried, and often beat myself up too much for feeling that I was not a good enough caregiver. It’s a great goal, and always important to remember that we all define “perfect” differently, and that the definition may vary by circumstance. I hope that, at least at times, I was Ben’s Mary Poppins.

Happy Birthday, Julie Andrews! Thank you for all of the joy you’re brought!

All photos: Mary Poppins (1964), Walt Disney Production

#Caregivers #Caregiving #ALS #MaryPoppins #Disney

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.

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