Gratitude

A State of Gratitude- Not Always Easy

It seems that Thanksgiving is always a melancholy holiday for me. I wake up in tears and feel alone. I’m not alone. I know that I am loved. I feel fortunate in so many ways that I do not take for granted. Still, during this family holiday, I cannot escape the sadness that the family I was always close to is gone. I have redefined my concept of family, but holidays like Thanksgiving remain a challenge. I had a lovely day with friends, but still felt a void in my heart.

I have been thinking about the film Up, and when Ellie wrote to Carl in her journal, “Thanks for the adventure – now go have a new one!” I have opened new doors and continue to do so, I have had new adventures, and I have created a new life for myself. However, there are times that I remain shaken by even the small steps that I take.

One of my rituals is to start every day on my way to work listening to my Ben playlist of songs that were special to us for various reasons. Once the playlist ends, I choose any album that strikes my fancy. Last week, I really wanted to listen to a Christmas album. I apologized to Ben out loud and put the album on instead of his playlist. I tried once before to deviate from the playlist, but it did not feel right. This time, I got teary and unnerved but decided to test myself. I can’t say that I fully enjoyed the album, but I showed myself that I can make these shifts and it does not mean I am forgetting Ben. He is always here.

If you read this blog, you know I believe in signs. I believe that Ben sent me a sign that morning. When I exited the subway, there was a musician playing the violin. Ben loved music, appreciated street musicians, and always gave them money. I don’t think I have ever seen a musician in this particular spot, but I quickly deposited a few dollars in his container, and he smiled at me and wished me happy holidays. I felt a bit overwhelmed but comforted by what I perceived as a sign that Ben was with me and was fine with my listening to new music. Just as Ray from The Princess and the Frog found peace in his knowledge that the star he saw was his beloved Evangeline, I find peace in these signs that Ben is with me. I want Ben to show me that it is okay when I do something new or decide to part with something that has a- perhaps even vague- connection to him. The good thing is that he does send me those signs. You might be saying that I am simply interpreting events to justify my reasoning or actions. You may be right. Or not.

That event stayed with me all day. I ponder whether I handle things well. I wonder why other people proceed more quickly. I have gotten better at ignoring the directives of usually well intended friends and acquaintances. Since I have a general contentedness, I just embrace that I am who I am and the ebbs and flows of grief. That evening, I went to see one of my very favorite performers, Liz Callaway, in a concert with her sister, Ann Hampton Callaway, who has also become a favorite. I have written about Liz in the past. I have followed her career since the 1980s, when I saw her in a Broadway musical called Baby. I became aware of Ann through Liz and love her voice. They often perform at the most wonderful venue in NYC called 54Below. It is my zen location and their voices, their relationship, the arrangements and musicians are my peaceful place. Liz always manages to sing a song that I need to hear, and last night did not disappoint. She sang a song called I’ll Be Here, from  musical I never saw called Ordinary Days. It tells a story of love and loss and signs from the departed man that it is okay for her to part with some of his things, or even to fall in love again, because he would always be with her. I knew the song from one of Liz’s albums, so as soon as it began, I felt the tears start to flow. The thing is, it was what I needed to hear. It was the validation that other people also experience the same struggles that I do, but that our loved ones are always with us and that continuing to step forward is okay.

This is a recording of Liz Callaway singing I’ll Be Here.

There are things that I am not ready to change. His old desktop computer, which has his music library, is becoming obsolete and a couple of days ago there was a notification that his system will not support the current updates. I only use the computer to play music, so I don’t know that it really needs replacing. However, that computer occupies space and music that, to me, represent Ben’s presence, and I do not know if I am ready to let go of that. It is irking me to think about it, so I am giving myself time to adjust and decide.

Maybe I am testing myself by slowly or subtly making changes in routines and my apartment because I am making big life changes. In two months, I will be retiring. I am very excited about it, but also nervous. It will, indeed, be a new adventure, and although being alone gives me freedom and independence, that also comes with loneliness and insecurity. This will be a phase of my life that is not connected to Ben, though he lives within me no matter what I’m doing. It is a phase of my life that is so important, and my dad is not here to give me advice. But, the memories, the lessons, the old discussions are still part of me. As the song Liz sang said, they are still here. I am grateful for that deeply felt knowledge.

Despite the hovering sadness and “unknowingness,” this is the time of giving thanks. Walt Disney said, “The more you are in a state of gratitude, the more you will attract things to be grateful for.”  I agree with this, and I counter the moments when I feel like I’m floundering by reminding myself of the many things for which I’m grateful. I have come to realize that Thanksgiving is a time when I deeply feel the losses. At the same time, I am grateful for the memories and love that fill my heart. I am grateful that like Peter Pan, I “have faith and trust” and will see the signs that my loved ones are watching over me as I venture into my new adventures.

Holidays can be difficult times. Be gentle with yourselves.

Gratitude is a Superpower on Thanksgiving and Always!

2011- The first time we went to Fantasmic!

I have to admit that even thinking about Thanksgiving gives me anxiety. But here it is. Thanksgiving is a very difficult holiday for me because it reinforces that I’ve lost the family to which I was so close. I have flashbacks of 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’d 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. And yet, 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 gratitude was indeed a super power, because it gave us perspective that allowed us to always see the love that was there. At these more challenging times, reminding myself of the many things for which I’m grateful continues to warm my heart, even if those memories come with tears.

Of course, I always take comfort in Disney, so 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 can’t shake the hovering sadness that I don’t have my family. Much of the family that I do have is religious and judgmental, and I don’t feel comfortable with them. Ben’s daughters are not in touch with me, so that is another lost connection.

However, I am grateful to have amazing friends, and I will celebrate with them today. I am so fortunate to be included in the families of my friends and my friends are my family. And, 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.

Every year, I talk to my students about the importance of gratitude, whether or not you celebrate Thanksgiving. When things are not going well, it helps to think of even the tiniest thing for which to be grateful- be it a favorite song or snack. I do validate the need to have a pity party from time to time, but said that once you begin to think of those little things for which you’re thankful, you may very well find that there are many of them. I could see that what I was saying resonated with many of them, and I could see them perk up when I said that I have done that myself when Ben and my dad were ill. Some of them have sad lives, especially at such young ages, so I like to see them respond to the idea of feeling grateful to receive a text that makes them smile, or that someone in class made them laugh, intentionally or not! It was nice to watch their faces light up as they raised their hands to share things they are grateful for- in Spanish, too! (well, I am a Spanish teacher!) Family is a sore spot for some of them, so they are happy that our vocabulary list includes music, candy, videogames, cell phones and other assorted things that they love.

Indeed, feeling and expressing gratitude has been a super power that’s helped me throughout caregiving and grief and emotions that have turned me Inside Out. What more appropriate time to summon gratitude than Thanksgiving?!

  •  At the top of my list is gratitude to have been the caregiver for two supremely important people in my life. Caregiving surely was not easy, but it was the most important, valuable, loving and rewarding thing I have ever done. I could not save them, but they knew that I was completely devoted to them, and that I would love them, care for them and provide a sense of security to them until they left this world. I treasure the knowledge that they loved me.
  • I am grateful for my cat, Disney. She has been there for me in good and bad times. When Ben was in the hospital, and I knew that he would never come home again, it was a priceless comfort to return home to her. Disney always loves to be hugged and I know that she was attuned to my sadness. I am now her caregiver, as she has many medical issues, but she has brought so much to my life and it is my privilege to take care of her. I’m grateful for my love of animals, as they are often more intuitive, honest and more humane than humans. And, they completely delight me!

Brave Disney during her hospital stay.

  • 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, while I was caregiving and then, in grief. Their spirit extended to Ben as well. When family didn’t step in or made empty promises to him-and there were indeed disappointments and dramas-Ben and I could always count on friends. I consider it a precious gift to have these wonderful people in my life and to know that I am loved and that Ben remains in their hearts.
  • 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.
  • I’m grateful to have settled into my life, enjoying many of the things I always loved, like going to the theater and spending time with friends, particularly friends I have not been able to see in quite some time. Yes, there is still loneliness and aloneness, but I never lose sight of how fortunate I am to be surrounded by wonderful people, a lot of love, and to carry with me in my heart very beautiful memories.
  • I’m certainly not grateful to have had a romance cut short by ALS and to have to try to date and look for love again. The online experience is not really working for me, but I’m grateful to have met some nice people who give me hope that someone may very well be out there for me! And, it’s nice to feel the excitement of a little crush or at least the possibility of romance from time to time!
  • I am grateful to be teaching in a wonderful public high school. Not only is it a healthier environment than my prior school, but it allowed me to start fresh, away from my old school and the memories it held of the crises, illnesses and, ultimately, the losses of my dad and Ben. Those memories certainly follow me, but it’s good to see that I can move beyond being seen only as Abby, the person everyone marveled at and felt bad for because I spun in circles juggling caregiving and teaching; Abby the caregiver and the Daddy’s girl who lost her dad and then her husband, even though those experiences are an integral part of me. My school plays music instead of ringing bells to signal the beginning and end of a class period, and my kids always love when I smile at the playing of “Twist and Shout,” sharing that it is the first song that Ben and I danced to- well, they’re teenagers- they love romantic stories! My stories sometimes help them share their stories, and we build a strong sense of community and compassion.
  • As I’ve said, I lost myself in caregiving but I also found myself. I discovered that I am a caregiver to my core, and last summer I earned my certificate as a caregiving consultant. I am grateful to have met some terrific people who, tragically, are experiencing ALS as patients or caregivers. Sharing our experiences is emotional and powerful. I’m 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’m 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!

Wishing well at Walt Disney World
July 2014

At this time of year in particular, I think about Pollyana, her wonderful world view and the “Glad Game” in the 1960 Walt Disney Productions film of the same name, and based on the novel by Eleanor Porter. (click to read my original post about that). This was a game that Pollyana’s father taught her to deal with disappointment, in which you turn every bad situation around and think about something you’re glad about regarding that situation. As time has passed, I’ve learned that being “in a state of gratitude” is not to naively play the Glad Game. It is not to ignore the bad experiences or diminish their impact, but, instead, to draw upon the very important power of perspective. I have a good cry when I need to, or when something triggers it, but I can also shift my focus to aspects of these experiences that compel gratitude. That said, I don’t like when people tell me that things happen for a reason with regard to my Dad and Ben and their experiences- there is no reason for those kinds of illnesses. The lessons could have been learned without that kind of suffering and loss.

Film clip: Pollyana, 1960, Copyright © Walt Disney Productions  For those of you who remember the TV series Bewitched, the woman in this clip, Agnes Moorehead, was Endora!

There are and there will be setbacks and I am consumed with feelings of wanting to be respectful to Ben’s memory and to make my dad 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 I’ll be okay because I have the super power of gratitude that gives me a positive perspective.

Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief. Try the “Glad Game.” And watch Pollyana. Please get back to me and post your comments in the space below.

Happy Thanksgiving.

With all good wishes,

Abby

 

 

 

Gratitude- It’s A Super Power!

 

2011- The first time we went to Fantasmic!

I spoke to my students yesterday about the importance of gratitude, whether or not you celebrate Thanksgiving. When things are not going well, it helps to think of even the tiniest thing for which to be grateful- be it a favorite song or snack. Once you begin to think of those little things, you may very well find that there are many of them. I could see that what I was saying resonated with many of them, and I could see them perk up when I said that I have done that myself. Indeed, feeling and expressing gratitude has been a super power that’s helped me throughout caregiving and grief and emotions that have turned me Inside Out. What more appropriate time to summon gratitude than Thanksgiving?!

Grief is filled with ebbs and flows of emotion, and at times, I give into the loneliness and memories of the ugliness of cancer and ALS, the messiness- emotional and physical- of caregiving, as well as the profound sadness over my losses (A little more than two years have passed since Ben left this world, and it’s almost four years since I lost my dad.) The sadness is magnified around a holiday like Thanksgiving, which reinforces that I’ve lost the family to which I was so close. Thoughts also resurface of Thanksgivings spent in the hospital with my dad or at home with Ben, when he was understandably down about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. And yet, although it was easy to lose sight of it at the time, Ben and I did have things for which to be thankful. Being able to feel gratitude was indeed a super power, because it gave us perspective that allowed us to always see the love that was there. I have been feeling down and alone lately, and reminding myself of the many things for which I’m grateful continues to warm my heart, even if those memories come with tears.

“The more you are in a state of gratitude, the more you will attract things to be grateful for,”
said Walt Disney. It certainly feels good to conjure gratitude, though when you’re facing a terminal illness like ALS or cancer, it seems almost disingenuous to think that you can put yourself into a state of gratitude and that you can attract things to be grateful for.  Ben lived in a state of denial about the progression of the disease, and I lived in a state of bracing myself for what might come our way, more relieved than grateful for any day without crises. As time has passed, I’ve learned that being “in a state of gratitude” is not to naively play the Glad Game and turn situations around like Pollyana did. It is not to ignore the bad experiences or diminish their impact, but, instead, to draw upon the very important power of perspective. I have a good cry when I need to, or when something triggers it, but I can also shift my focus to aspects of these experiences that compel gratitude. Once I’m thinking about things to be grateful for, I realize that I have quite a nice list. That’s a good and humbling feeling.

At the top of my list is gratitude to have been the caregiver for two supremely important people in my life. Caregiving surely was not easy, but it was the most important, valuable, loving and rewarding thing I have ever done. I could not save them, but they knew that I was completely devoted to them, and that I would love them, care for them and provide a sense of security to them until they left this world. I treasure the knowledge that they loved me.

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, while I was caregiving and then, in grief. Their spirit extended to Ben as well. When family didn’t step in or made empty promises to him-and there were indeed disappointments and dramas-Ben and I  could always count on friends. I consider it a precious gift to have these wonderful people in my life and to know that I am loved and that Ben remains in their hearts.

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, since today is the anniversary of the release of Toy Story, I must note that Buzz Lightyear was Ben’s very favorite Disney super hero. I am so grateful that even when Ben was feeling weak and somewhat defeated by ALS, Buzz brought him so much joy and laughter. This video clip is one of my very favorite memories. I am so grateful to have these memories.

 

Walt Disney also said: We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.

I’m grateful to have settled into my life, enjoying many of the things I always loved, like going to the theater and spending time with friends, particularly friends I have not been able to see in quite some time. Yes, there is still loneliness and aloneness, but I never lose sight of how fortunate I am to be surrounded by wonderful people, a lot of love, and to carry with me in my heart very beautiful memories.

As I’ve said, I lost myself in caregiving but I also found myself. I discovered that I am a caregiver to my core, and I am pursuing my certificate as a caregiving consultant. I am grateful to have met some wonderful people who, tragically, are experiencing ALS as patients or caregivers. Sharing our experiences is emotional and powerful. I’m 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 to be teaching in a new and wonderful public high school. Not only is it a healthier environment, but it allowed me to start fresh, away from my old school and the memories it held of the crises, illnesses and, ultimately, the losses of my dad and Ben. It is also an opportunity to redefine myself beyond being seen only as Abby, the person everyone marveled at and felt bad for because I spun in circles juggling caregiving and teaching; Abby the caregiver and the Daddy’s girl who lost her dad and then her husband, even though those experiences are an integral part of me. Not exactly who I am now, but as Walt said, I’m opening new doors and finding my way down new paths.

There are and there will be setbacks and I am consumed with feelings of wanting to be respectful to Ben’s memory and to make my dad proud. I am cautiously optimistic about starting down a new path to see where it leads. 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 I’ll be okay because I have the super power of gratitude that gives me a positive perspective.

Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief.

Happy Thanksgiving.

With all good wishes,

Abby

Halloween 2010
Walt Disney World. Cinderella’s Wishing Well. Always wishing for a cure!

 

 

 

 

 

Superheroes of Caregiving and Grief: Gratitude and Perspective

Ben and I at Walt Disney World, July 2014

Ben and I at Walt Disney World, July 2014

A little more than a year has passed since Ben left this world, and it’s almost 3 years since I lost my dad. Grief is filled with ebbs and flows of emotion, and I do, at times, unapologetically allow myself to give into the loneliness and memories of the ugliness of cancer and ALS, the messiness- emotional and physical- of caregiving, as well as the profound sadness over my losses. The sadness is magnified around a holiday like Thanksgiving, which reinforces that I’ve lost the family to which I was so close. Thoughts also resurface of Thanksgivings spent in the hospital with my dad or at home with Ben, when he was understandably down about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. And yet, although it was easy to lose sight of it at the time, I did have things for which to be thankful. I still do.

“The more you are in a state of gratitude, the more you will attract things to be grateful for,” said Walt Disney. In theory, I agree with Walt (OK, so no surprise there!) But, when I was watching my loved ones deal with ALS and cancer, and I was struggling with caregiving, and then grief, although I was appreciative of people and things, I can’t say that the state of gratitude was where I lived, or even where I wanted to be. It took too much effort. Ben lived in a state of denial about the progression of the disease, and I lived in a state of anxiety, more relieved than grateful for any day without crises. To me, saying I was in a state of gratitude would have implied a sense of peace and contentedness that I did not have. As time has passed, however, I’ve learned that “being in a state of gratitude” did not mean to naively ignore or diminish the impact of the bad experiences, or to try to “push Sadness into a corner,” like Joy from “Inside Out” (click here for that post.) To be in a state of gratitude gives me the very important power of perspective. There were times that I could not get beyond the chaos and sadness, and that was and is fine and genuine, but I can also shift my perspective to focus on the many aspects of these experiences that were filled with love, compassion and caring, and those do compel gratitude and invite more of these thoughts. That’s also genuine, and it’s a good and humbling feeling.

My dad and I

My dad and I

I feel very fortunate to be able to share some things I’ve discovered in my state, or perspective, of gratitude.

At the top of my gratitude list is gratitude to have been the caregiver for two supremely important people in my life. Caregiving was the most heartbreaking and challenging thing I’ve ever done, but it was also the most important, valuable, loving and rewarding thing I have ever done. I could not save my dad or Ben, and I wish we did not have to take these journeys, but I am so thankful that they knew that I was completely devoted to them, and that I would love them, care for them and provide a sense of security to them until they left this world. It didn’t always feel like it, but it was a gift to be able to feel and express that depth of love in such tragic circumstances. And, I treasure the knowledge that they loved me.

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, while I was caregiving and then, in grief. Their spirit extended to Ben as well. In Ben’s situation, when family didn’t step in -and there were definitely disappointments and dramas- we  could always count on friends. I consider it a precious gift to have these wonderful people in my life and to know that I am loved and that Ben remains in their hearts.

I am grateful that in June I was offered an opportunity to present at the annual memorial service of Mount Sinai Medical Center’s Visiting Doctors Program a public tribute to Ben and to the people from that program and the hospital who were so fantastic to him, and to me. ALS is a rare disease, and although it is difficult for me to speak publicly, I feel it is important to take any occasion to share Ben’s experience and, hopefully, contribute in some way to an overall understanding of what it is to live with ALS and why there must be tireless efforts to find a cure. If you’d like to read my tribute, click here.

I am grateful to find comfort in the arts and in my creative endeavors.  Blogging has been tremendously helpful, and it touches my heart to know that readers find comfort in my words. I’ve gotten back into my craft work with miniatures and into Pets en Voyage, the pet souvenir business Ben and my dad helped me develop and launch. I’ve also created displays of photos and memorabilia around my home, and looking at these things always makes me smile, if sometimes through tears.

I am grateful to Walt Disney for giving us all things Disney. I am simply in awe of his imagination and vision. I am grateful to Disney for amusement, consolation, comfort, life lessons, belief that dreams come true, perspective and incredible memories. And, because I am so grateful, I even named my cat Disney. I am thankful for her every single day for the love, cuddles and laughs that she gives me and for the love she showed to Ben, especially when she visited him in the hospice.

photo-7

I am grateful to be resourceful, and to have sought out support groups and resources that have guided, encouraged and motivated me, and let me know that I am not alone in my feelings.

Walt Disney also said, “We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.”

I’m grateful that for the first time in a long time, I am cautiously optimistic about starting down a new path to see where it leads as I reshape my life, though there are and there will be setbacks. My memories, and desire to respect Ben and my dad and make them proud, will accompany and guide me on my journey and will always be a part of me, and that gives me great comfort and peace. This would also be a good place to add that I am grateful to have my mom’s child-like wonder and spirit, with an inner child that cannot be contained. It allows me to continue to wish upon stars for dreams to come true. I just keep reminding myself of what I learned from Christopher Robin and Winnie-the-Pooh: “You are braver than you believe, stronger than you seem and smarter than you think.” I know I’ll be okay.

Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief. I hope that if you are reading this, and you’re struggling with gratitude and the holidays, that you will be true to your feelings but also consider a perspective that allows you to see and be grateful for love, compassion and good memories to carry you forward. And, take a bit of time (I do realize that time to yourself can be a luxury) to think, write, draw or in some other way acknowledge yourself.

Happy Thanksgiving.

With all good wishes,

Abby