ALS

National Hugging Day- When We All Need a Hug

Who wouldn’t be happy with a big hug from Mickey!?!?! July 2014

Today is National Hugging Day. Seems there is a National Day for everything. I posted this photo on Facebook in honor of the occasion. It’s one of my very favorites. The story is interesting and, I think, worth sharing.

Ben and I were always so happy to meet Mickey and Minnie. As his ALS progressed, he still tried to walk to see Mickey. I knew that it was getting bad when he stopped trying to walk and just rode his electric wheelchair up to Mickey. After all, I was always the one who got super excited to see my friends and he generally laughed at me. In this photo, we had just entered the room and were greeted by Mickey. This was during the brief window of time that Mickey spoke (electronics, it wasn’t good). I was so shocked to hear him and couldn’t stop laughing.

What you cannot tell by looking at the pure happiness on my face is that this picture was taken on our last visit to Walt Disney World in July 2014. It was a truly wonderful visit, but stressful because Ben needed much more assistance (we brought a paid caregiver with us) and because we knew in our hearts that it would be our last visit. You can read more about that visit by clicking here. The Magic Kingdom is very accessible, but making sure that Ben had what he needed, that there were accessible bathrooms nearby and that Ben would be able to fully enjoy himself did come with stress. Getting to meet Mickey without any issue and with Ben feeling truly delighted gave me a feeling of success and relief. What you also don’t see in this picture is that I whispered in Mickey’s ear that we really needed some magic. Mickey just had to look at Ben in his electric wheelchair- unable to speak very clearly, very thin but with super swollen feet- to know there was a medical issue. Mickey held me tight and he patted my hand. He and Minnie gave Ben a lot of attention. It was emotional and it was beautiful.  I needed that hug. I needed to believe that Mickey could help.

I believe the Disney magic did help. No, it didn’t cure Ben’s ALS, but, being at Walt Disney World brought Ben such happiness, it allowed him to feel free, and, as Ben described, he forgot his problems, which is saying quite a lot. We had four years after his diagnosis during which we were fortunate to enjoy several visits to Walt Disney World. I do call that pixie dust. So was the hug.

I feel it’s an important story to tell because we never know what’s going on in someone’s head or their story. I love that this photo captured a very vibrant smile before the tears that came with the emotion. That photo reminds me that a hug from Mickey Mouse came with all of the dreams, wishes and comfort that is Disney magic. That hug was compassion. We all need to show and to feel that. Mickey didn’t have to say anything, didn’t have to offer any advice or judgment- his hug was the compassion that we needed.

Hugs were so important to us. Since the characters don’t speak, hugs were a way that they communicated. When Goofy saw Ben get emotional, he didn’t know what to do so he kept hugging Ben and then trying to make him laugh, which he did. Hugs are powerful.

This is another favorite picture of mine- Ben loved Sully, and when Sully saw Ben in the electric wheelchair, he ran over to him and offered to help him up. Sully gave Ben the biggest hug, which made Ben so happy. You can just see his inner child shining in this photo. It absolutely delights me to have these memories.

I always hugged Ben, particularly when there were no words for what he was feeling, but one of the things that upset him as his ALS progressed was that he could no longer give hugs. Ben gave great hugs! He was a big, burly guy and would just envelope me. I still remember him saying that he felt terrible that he could not hug me when I struggled with my Dad being ill and I learned that my dad died. He couldn’t hug me after I returned from the funeral.

I think that COVID 19 has shown us that we cannot be dismissive of gestures like hugs. I miss them. Tinker Bell gets lots of them, though she would tell you that she doesn’t love hugs at all.

I send everyone a big virtual hug of compassion on this National Hugging Day! Let’s hope that next year is different.

Happy Birthday, Walt Disney!

Walt Disney, Walt Disney World, ALS, Caregiver, Grief

Walt Disney was born on this day, December 5, in 1901. As anyone who knows me or reads this blog is aware, he is an idol of mine, and such a huge inspiration, for his unbridled imagination, firm belief and proof that dreams can come true, and tremendous vision. I am simply in awe of his legacy to this world.

In my blog I shine the light on wonderful memories of Walt Disney World and how it makes me feel so connected to my mom and to Ben, and for that I will always be grateful.

When I first began this blog, in celebration of Walt’s birthday, I put together just a few of his quotes that are special to me. I turn to them when I need some inspiration, and I’d like to present them as an annual tribute to his brilliance on his birthday!

“That’s the real trouble with the world. Too many people grow up.”

My mom loved Disney and was also a child at heart. I got that spirit from her. I think it’s always important to retain our sense of whimsy and wonder. It helps to stay optimistic and to be creative in problem solving.

Mickey Mouse, Walt Disney World, Disney

My parents with Mickey in 1987

“People who have worked with me say I am ‘innocence in action.’ They say I have the innocence and unself-consciousness of a child.”

People might say that I am sometimes a bit of a Pollyanna in my innocence, but it’s who I am. Yes, I do get disappointed sometimes, and I have learned to balance innocence with a need to protect myself, but I believe that this quality enables me to see possibilities and to fantasize in a healthy way.

waltandmary

“Laughter is timeless, imagination has no age, dreams are forever.”

Agreed. The perfect quote. It was a mindset Ben and I needed as he dealt with ALS. It’s a favorite quote that continues to lead me forward and allows me to stay a child at heart no matter the grown-up challenges I face.

Walt Disney, Walt Disney World

“The greatest moments in life are not concerned with selfish achievements but rather with the things we do for the people we love and esteem.” 

I think that every caregiver would wholeheartedly agree with that.

Walt Disney, Walt Disney World, ALS, Caregiver, Grief

“I hope we never lose sight of one thing-that it was all started by a mouse.”

Walt Disney, Walt Disney World

“Why be a governor or a senator when you can be king of Disneyland?”

Given the current state of the country, I’d opt for a position at Disneyland!

October 2019 next to Walt and Mickey. My first time back at WDW without Ben. I still found the magic and the laughter.

Happy Birthday, Walt, the consummate child at heart!  Thank you for all you’ve given to me and the legacy you’ve left to the world.

This was my beloved cat, Disney, celebrating Mr. Walt's birthday, along with Duffy (X 2) and Eeyore!

My cat, Disney, celebrating Mr. Walt’s birthday, along with Duffy (X 2) and Eeyore!

 

On the Anniversary of The Jungle Book- A look at Caregiving, ALS and Fighting Shere Khan

Disney’s Animal Kingdom- 2001, pre-ALS. Ben was psyched to meet Baloo!

Today marks the 53rd anniversary of Disney’s The Jungle Book. I love this classic tale of Mowgli, a man-cub who is raised in the jungle, nurtured by some animals and hated by Shere Khan, the tiger who hates man and is determined to kill Mowgli. I even enjoyed the live action remake. I am moved by the sweet tale of Mowgli’s relationship with Bagheera, the wise panther who teaches and watches over him, and Baloo, the big goofy bear who is a great and caring friend. I always smile when I watch this film, because Ben loved Baloo and fancied himself a big,cuddly bear- a description with which I must agree! There is much discussion about racism in what we consider our treasure trove of classics, including many Disney films. I do believe that it is important to acknowledge and address these issues. Caregiving knows no boundaries. When I watch the film, I cannot help but reflect upon how much The Jungle Book has to say about a caregiving relationship and how Ben and I confronted ALS.

Bagheera has all the qualities of a good caregiver: patience, the ability to listen and reason, understanding of Mowgli as a man-cub within the jungle environment, willingness to let Mowgli test himself, reliability, intelligence, common sense and loyalty. Who could ask for more in a caregiver? Baloo is a great buddy, and he and Mowgli have a deep friendship and love, but Baloo also needs the guidance of Bagheera. When Baloo resists the reality that Mowgli needs to return to the “man village” and be around people like himself, Bagheera needs to remind Baloo that although he loves his little buddy and thinks of him as a son, he has to see the big picture in caring for Mowgli and that he has to think about what was best for Mowgli and not just for himself. Those are tough choices and I remember them well. Caring for Ben meant never losing sight of what our priorities were. Like Baloo, there were many times when I felt Ben deserved to indulge in any of his whims because I did not know how long he would have that luxury. And, we knew that time was not on his side. Taking him to Walt Disney World for one last visit was a very joyful indulgence. There were also the gut wrenching realities. I remember that after Ben repeatedly said that he wanted to go home from the hospital, I just wanted to honor his wishes and I asked his doctor if it would be possible to bring him home. His doctor, who proved to be my Bagheera, provided the wisdom and the reasoning, and then I had to have those heartbreaking conversations with Ben. There were stressful times when, just like Baloo and Mowgli, we argued and sulked. But, the caring in caregiving never went away and neither did the love.

I suppose that ALS was our Shere Khan. The wolves who raised Mowgli from the time Bagheera found him knew that they could not stand up to Shere Khan. They did not stop loving Mowgli, but they knew that he could not continue to live with them or Shere Khan likely would have killed all of them. Caregiving also comes with these difficult decisions. Sometimes it’s a matter of caregiving becoming so difficult that it poses physical and emotional risks to a caregiver. In Ben’s case, had he not chosen to go to the hospital’s hospice unit and separate from the vent, he would have had to go to a facility because he could not have lived in our apartment with a tracheostomy and needing 24/7 nursing care. This was not an option we liked but it was one we had to accept.

I could also relate to the battle in which Shere Khan seriously wounds Baloo- the fight to protect and care for Ben did take a toll on me in many ways that have still left scars, but love and devotion kept me at his side and I have no regrets about that. Just like Shere Khan, ALS was a deadly force, but, unfortunately, in our true story, it was one that we could not outwit or defeat.

I don’t know that I would run to Baloo for help in a crisis, though he might be great comic relief! Still, Baloo was protective of Mowgli and he has a good message. As caregivers, we don’t often get to “forget about your worries and your strife” and life seems much more complicated than “the bare necessities.” However, it is so important to take the time to cherish and remember the simple and wonderful aspects of our relationships and life prior to caregiving. These are the things that let you remember who you were before you were in a caregiving relationship.

As for me, I think I was a combination of Bagheera and Baloo- a dedicated, thoughtful caregiver, acquiring skills and perspective during on the job training, with a sense of humor and incredible klutziness. Importantly, Ben always felt safe and secure with me. Some caregivers choose the role and others are thrust into it. In any situation, it’s important to know ourselves and to honestly assess the dynamics of our relationships and the shifts over time. Are you more Bagheera or Baloo? How do you define a good caregiver? Are there other characters in your story in supporting roles? These are all part of “the bare necessities of life” in caregiving.

 

Five Years- Was Fairy Godmother Right About Pain and Memory?

My dear Ben,

Today is five years. Five years. It’s been a difficult day, as it always is. I went to sleep reliving our last night together. I woke up reliving that last day. I’m still grateful that you left this earth surrounded by love and music. It still hurts to my core. I have repeatedly watched this video, which I made on the anniversary of my first year without you. I hope you feel the love. I believe you do.

Five years. Should those memories still be so debilitating? It seems like a milestone increment of time that should come with some kind of revelation. Should. I hate those “shoulds.” I think about the quote from Disney’s 2015 live action Cinderella: “Time passed and pain turned to memory.” Does it? “Should” it? For me, the pain is still here. It is not just a memory. Yes, it has shifted and it isn’t as acute on a daily basis. Triggers like this date are huge setbacks. I think that the quarantine period due to the pandemic has brought back so many of the caregiving memories. Although removed from those responsibilities and worries, with every excursion outdoors I have found myself dwelling on how it would have been if you were here and there was a constant threat of COVID on top of ALS.

Five years. I don’t know where I expected to be. I try not to concern myself about what others think about it. There are times when I feel like I’ve come far and times whenI feel that I am too consumed with our experiences and still in a relationship that I must face can now only exist in the form of a spiritual connection. I recently printed out all of my blog posts from the past four years. I spent the past several days reading them- 695 pages of thoughts, memories, regrets, concerns, wishes, successes, failures, steps forward and steps back. I can see that over the past five years I have ventured more purposefully into life. I have done a lot of reflecting. I have carved out a nice life for myself. I have also given myself permission to feel however I’m feeling. I find it satisfying to find ways to support other caregivers. I am proud that I have contributed to fostering a caring community within my school and I still intend to reach more caregiver kids. I have good friends- old and new- and I do things that I love. I even wore a wet suit to get in the water with beluga whales. Yes, I actually bought and wore a bathing suit. Early in my writing I expressed a reluctance, but also a sadness, that I did not know if I could ever enjoy Walt Disney World without you. Last year, I was able to return with Monica, Andi and Snappy (Abby 2.0) and we honored you while we also created new memories. It was heartwarming and empowering. So, there has been growth. Is it enough?

I feel a sense of bittersweet pride when I take delight in the new memories. I flounder when I think about the future, especially when I consider that I am alone. Yet, I know it’s time. I even bought a new set of picture frames to capture the new memories and give them a special place beside ours. When I say it’s time, it’s not because of the five year marker. If it had happened after two years, that would have been fine. If it didn’t happen for another five years, that would have been fine, too. Walt Disney said, First, think. Second, dream. Third, believe. And finally, dare.” Thinking and dreaming are easy for me.When I say it’s time, it’s because I’m feeling prepared to try to believe in myself enough to dare to find my way. I think that’s a good thing, even with the pain.

I am not sure where I want to go from here, which is one of the reasons that I printed out my blog. Merida says we need to look inside ourselves to see our destiny, and caregiving and grief resonate so clearly within me. I think that this five year mark is a good time to look at this period of time and my evolving perspective. It gives me great comfort to know that you remain so vibrant in my treasure trove of memories. I feel that those memories propel me to further explore and discover my destiny. The pain is not just a memory. It is a palpable reminder of how much love there was and how much those experiences are shaping my life in positive ways. You will, of course, join me in this exploration. Please help me to confidently travel the new paths in work, life and love.

Five years. I continue to miss you every day. I’m getting more accustomed to finding ways to keep you with me as I continue my own journey. I do often feel alone. Sometimes, I think I keep you close to avoid those feelings. Thank you for sending me signs that you’re with me. I know there are people who don’t believe in that, but we always did. Thank you for letting me feel supported when I step out on my own. I will always feel a sense of anger that you were cheated of so much life and we were cheated of so much time together. I hope that you can feel that I often look at life through your eyes to experience things for both of us. I feel the pain of your absence, but I do strongly feel your presence, too. You are still so deep in my heart, woven into the fabric of who I am. Our relationship is not baggage, but rather experience that offers the important reminder that love isn’t always easy but it is, as they say in Bambi, a song that never ends.

I spent a lot of today looking at our videos and photos. There were a lot of tears but also many smiles. I have told Tinker Bell about you. Interestingly, she spent a lot of time on your Monsters, Inc blanket. She’s been very attentive, too. Maybe you had a little visit with her. Each night, we look at your picture which is my screensaver, and we say goodnight to you.

I do take every opportunity to honor you, my Ben. I hope you feel that. I hope that you are enjoying what I believe is your constant presence at Walt Disney World as the grim grinning ghost you wished to be, and that you are, as you always dreamed during your battle with ALS, walking, running, talking, singing, eating and playing music.

I love you,

Abby

February 2020 Calendar Page

 

In Grief, Do We Move Onward?

Copyright © Disney Pixar 2020

I do not like the expression “moving on” with regard to my grief. To me, it implies leaving something behind. I have not left Ben behind. I am particularly sensitive to that as the five year anniversary of his “leaving” approaches.

I was not sure what to expect from Disney’s film, Onward. As it turned out, I thought it was an ambitious and sweet effort to approach the death of a parent, and death, in general. The story has good messaging that could be helpful to children. It was even validating to me. But, I still don’t like the title.

Onward tells the story of two elf brothers, Ian and Barley. They have lost their dad, but it appears that he died before Ian was born. The mom reminds them of how loved they were, pleased to see Ian wearing his dad’s sweatshirt. Ian so much wants to know about his dad. For his birthday, he has a list of things that will define him as the “new me,” and that list includes being like his dad, but he really doesn’t know what his dad was like. Barley has few memories of his dad that he does not seem to want to talk much about, and he finally admits that he felt bad that when his dad was in the hospital and had lots of tubes in him, Barley was too afraid to see him. Having lost that last chance to see his dad, from that point on, he vowed never to be afraid again.

Ian wants memories. He plays a tape recording of his dad talking, conversing with his dad as if it is an actual conversation and finding such comfort in hearing his dad’s voice. It’s a heartbreaking reminder that we can never bring back these experiences. I can relate to that feeling of trying to watch videos and put myself back in time to those moments. I am lucky that I have a lot of memories. I’m grateful that I was there for Ben during the bad ones. As a teacher, I have met many students who have lost a parent and do not have memories. Films like this show them that they are not alone. And, they tackle the material that can be hard for remaining parents to discuss, opening doors for discussion. For Day of the Dead, I show Coco in my Spanish classes, and I have had more than one student ask to watch it alone or with me during their lunch period, because it helped them to process their losses and they liked to talk with me about the comfort of feeling that their loved ones were still there for them on some level.

In Onward, the boys’ mom is the support and encouragement that the boys need. She recites a mantra that there’s a warrior inside as a reminder to herself. This is a mantra that could help anyone throughout their experiences in caregiving and in grief. She not only needs to help her sons in dangerous situations, but also in their grief. On Ian’s sixteenth birthday, their mom gives them a gift per their father’s wishes. Even mom makes a discovery about her late husband. He was a wizard! He leaves the boys with a special wizard’s staff and a spell that would bring him back for a day to see how they have grown up. Imagine such a spell! What I wouldn’t give for a day with Ben.  As it turns out, the spell gets messed up and they only bring back their dad’s legs and feet. They are determined to fix the spell to be able to spend the time with him. This leads to a series of mishaps. Oddly, after traversing the land in search of the missing gem to fix the spell, they end up exactly where they started. Such is grief. We go through all sorts of motions to make sense of loss and to allow ourselves to feel the person is still with us. In the end, we cannot recreate the person or the experiences. We find ourselves back at the pain of loss. However, the journey allows us to explore our memories, our emotions, and even to gain better understandings of others and ourselves.

During their adventures to bring back their dad, Ian sees that it’s Barley who has a lot to say to their dad. Barley misses the man he knew. Ian misses having and knowing his dad and realizes that Barley has been that father figure for him. All of the things Ian lamented not doing with his dad- laughing, learning to drive, taking walks- he actually did with Barley. Ian knows that Barley is the one who deeply needs to have those moments with their dad. He lets Barley have that last hug. I still wish for that hug. It’s gut-wrenching to acknowledge that this cannot really happen (unless I come across a wizard’s staff). If I thought I could, like both boys, I would fight for an opportunity to reunite with Ben to ask him questions and to hug him. Just like the boys, I would want to know that he is happy for and proud of me.

I often write about the signs I see that Ben is with me and how they console and inspire me. I also take comfort in revisiting our memories, especially through photos and videos. As I’ve been organizing my apartment this summer, my breath has been taken away as I’ve rediscovered cards, gifts, ticket stubs and other mementos of our time together. Navigating grief does sometimes feel like a quest, but I don’t see it as one in which I forge “onward” and triumphantly defeat grief. Instead, carrying in my heart deep love and memories, as well as the belief that Ben is with me, I humbly step forward in life.