ALS

Walt Disney: A Legacy of More than Animation (12.5.1901-12.15.1966)

Walt Disney, Walt Disney World

Walt Disney’s legacy lives on so vibrantly and timelessly in so many ways that it’s hard to believe that today, December 15, 2018 marks 53 years since he left this earth. He’s been a part of my life for as long as I can remember. I have such vivid memories of my mom talking about her favorite Disney movies and how she loved Mickey Mouse from the time she was a child. Mary Poppins was the first movie I ever saw in a theater. It just amazes me how Mickey and his friends touch the hearts of generation after generation. Now, I love to read about him and get a glimpse into his artistic vision and the building of his business enterprises. His belief in himself and commitment to his art are things that we can all learn from. I believe that Walt Disney’s words of wisdom and legacy will live on, as Buzz Lightyear would say, “to infinity and beyond.”

My blog was inspired by the way that I was affected by Disney films, characters and lyrics in light of caregiving and loss. As much as I love to be in NYC during the holiday season, I do have a sense of melancholy. So many of my more recent holiday memories have sadness. My dad was in the hospital and then a hospice during the holiday season of 2013 and the lights I saw were from the windows of a car that took me home from visiting him or the train to and from Long Island. When Ben was ill we couldn’t go together to see the holiday displays and I rarely had the time to go on my own. When I did have a little time, I either felt guilty or couldn’t really enjoy anything. It took a couple of years before I could bring myself to visit the tree at Rockefeller Center and look at the beautiful store displays.  I guess these memories loom, although just today I went to Rockefeller Center to admire the tree and other holiday treats.

Today seems a perfect day to honor Walt’s memory by reflecting on some of his words of wisdom.  They help me to look to the future with optimism, and I think that’s especially significant as we approach a new year. Also, they make me think about the concept of a legacy. My parents left me with a legacy of kindness, loyalty and compassion and always having a sense of humor and whimsy. I hope that I will always honor them and leave a similar legacy.

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

ALS, Walt Disney World, Lilo and Stitch

The very first time we met Stitch, October 2006!

As someone who still has a lot of my childhood dolls and can’t resist adding new ones to my collection, it is obvious to everyone who knows me that I completely embrace the idea that you need to hold on to your inner child.  As I’ve said, my inner child is very much at the forefront of who I am. For me, watching a Disney film, and imagining a fairy or fairy godmother at my side, also allowed me to escape the realities of caregiving and loss. Ben always said that he loved Walt Disney World because you simply forgot your problems. With a diagnosis of ALS, his problems were huge, but immersed in that fantasy land, he was a big kid having a wonderful time, even despite his challenges. For him to be able to feel that sense of joy and excitement was a gift. Walt Disney envisioned and provided that magical setting. I never want to lose the attitude that allows me to step right into the fantasy the way I did with Ben. I never want to stop wishing on stars or forget the wonder and delight that I had as a child.

“Why worry? If you’ve done the very best you can, worrying won’t make it any better.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2011- Mickey’s Not So Scary Halloween Party. I held Ben on one arm and Minnie held him on the other!

This is absolutely true. Alas, I am a worrier, and I have to work on this, but Walt was right. I can’t say that any of my worrying helped, although perhaps thinking through worst case scenarios may have helped me prepare for a variety of situations. I’ve heard that worrying burns calories, but I’ve seen no indication that this works! I worry now about my future, particularly without much family. I worry that I will never find love again and I will be alone. But, the worrying isn’t going to affect any change, so it’s time to proceed in the best way I can, and make decisions I feel will help me to create a new life, or, rather, enhance my current one with new love, laughter, joy and peace.  I’m going to try harder to listen to Walt on this piece of advice!

“Life is composed of lights and shadows, and we would be untruthful, insincere and saccharine if we tried to pretend there were no shadows.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Epcot

2010- First use of the scooter to go to Epcot.

There is more light in my life now, and less guilt about feeling happiness, and I know that the people who love and care for me are glad to see me enjoying life again. But there are also the shadows, and I am not someone who likes to, or can, put on a show of emotions. The good and bad moments are all okay. They make me human.

“I always like to look on the optimistic side of life, but I am realistic enough to know that life is a complex matter.”

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse, Wishing Well

2011- A visit to the Wishing Well at Cinderella’s Castle to wish for a cure for ALS.

Some people might think that my obsession with all things Disney and talk of pixie dust and wishing on stars is silly. Well, I think silly is just fine (okay, within reason.) I like to think that it is my inner child reminding me of possibilities and letting me believe in my own happy endings. But, just like Walt, I am realistic and I have experienced enough of life to know that things get complicated, and sometimes, downright ugly. In the face of life’s complexities, it helps me to stay positive if I escape for a while into a Disney frame of mind.

“In bad times and in good, I have never lost my sense of zest for life.”

ALS,Caregiving,Grief,Walt Disney World, Disney

This quote made me think of Ben and his determination to enjoy life despite ALS. He surrounded himself with music and technology, and he ventured into the world and enjoyed all that he could with a zest for life that, I believe, let him manage the disease well for about four years. It was certainly a good lesson for me.

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

Ben would not be at all surprised that this Eeyore came home with me.

This quote is my inspiration for the future. It’s allowed me to reach out to people, to travel to new places and make dreams come true- I even returned to Walt Disney World, paying tribute to Ben but also creating new memories with dear friends. Throughout these experiences, I did miss Ben. I also struggle with feeling lost and lonely. At the same time, I believe that my curiosity, desire to learn, love and compassion will keep carrying me forward to find new and more love, laughter, peace and joy. I feel cautiously optimistic about the exploration.

“All our dreams can come true, if we have the courage to pursue them.”

My buddy is Cruz. Summer 2019- finding happiness! Meeting otters- I made a dream come true!

I think that I finally have the strength to summon the courage to follow my dreams. It feels pretty great, and yet a bit scary, to say that. I do believe that pixie dust would help.

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

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2011- This is one of my very favorite pictures of Ben because he was so full of happiness and laughter. Here, he was laughing at me when I met Tinker Bell.

This is one of my very favorite quotes. Laughter, imagination, dreams and, of course, love, were the key ingredients in surviving years of caregiving and loss. They have always been there when I needed them, even if, at times, they felt out of reach. This is something to remember always. Never lose hope. Never lose the spark of a dream.

“First, think. Second, believe. Third, dream. And finally, dare.”

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Here I go!

That sounds like a good plan! I’m hitting bumps in the road and struggling with confidence, but I’m working on it. Thank you, Walt

 

Gratitude: A Super Power at Thanksgiving, but also In Caregiving, Grief and Always!

Today is 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.

Thanksgiving has become a bittersweet event for me. It is a holiday that reinforces that I’ve lost the family to which I was so close. Last night, as I walked on Broadway and reveled in the tree stands filling with trees and the wonderful fragrance on the streets, I felt a mix of excitement and sadness. Ben and I loved this time of year and we always picked a tree from one of the stands near our apartment. Though I’ve learned to coexist with a constant feeling of missing Ben, last night I couldn’t fight the tears. I came home and talked out loud to him about how much I miss him and how hard it is at this time of year.

I’m not someone who attaches a lot of sentiment to food other than baking cookies and humentashen that my grandma taught me to make using my great-grandma’s recipe, but I realize that now, foods actually carry a lot of memories for me. 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. Last week, seeing the turkey gravy display at Trader Joe’s was an unnerving reminder of the laughter and tears of my making all sorts of combinations of foods for Ben in the Vitamix as eating became increasingly difficult for him. I always had many boxes of Trader Joe’s turkey gravy because Ben liked it mixed with chicken and mashed potatoes, and I mixed it with all kinds of things to create a puree that he liked, including, if you can believe it, teriyaki chicken! 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, be present in the moment and have hope for the future. Now, 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.

My dad and I

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.

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, and I don’t think I was always good at it, 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 is in their hearts. To be able to return to Walt Disney World a couple of months ago with Monica and her daughters (click here for that post) and pay tribute to Ben and my sweet Disney, while creating new memories with most special friends was an unforgettable and heartwarming experience and celebration of friendship.

  • It is always hard to lose a pet because they are family, and it was particularly hard for me to lose Disney. She was there for me in good and bad times and she was there for Ben, too. Disney was my closest remaining connection to Ben, since she was home with him every day and she witnessed his ALS progression. I became her caregiver, as she had many medical issues, but she brought so much to my life and it was my privilege to take care of her.

    Brave Disney during her hospital stay.

Now, I am grateful for my cat, Tinker Bell. She is young- not yet three years old- and has kitten energy that I have never experienced, and which keeps me on my toes, and makes me laugh and smile. Disney and my previous cat, Tiffany, were senior cats when they came into my life. Tinker Bell has helped me through my sadness over losing Disney. She has a lot to say, loves to be next to me at all times and she listens to all of my stories about Disney. She reminds me that there will always be good things to welcome into my life.

On Disney’s “Gotcha Day,” February 18, 2019 at NYC’s Meow Parlour

  • 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! Discovering the Georgia Aquarium has brought so much joy to me as I have reshaped my life. After losing Ben, it was hard to find my own way and to feel like I was trying to find ways to enjoy our favorite things without him. Planning my first trip to the Georgia Aquarium to meet otters, dolphins and penguins was fun and yet awkward, but I realized that being close to the animals and doing the encounter programs has been a most wonderful opportunity, not only to greet, touch and feed them, but to have discovered a joy that is all mine, though I know that Ben is with me because we did love aquariums. I went back last summer, which was otterly amazing (click here to read about it) and I plan to return this summer, too.

My buddy is Cruz. Summer 2019- finding happiness!

  • 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 stories sometimes help my students share their own 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. I still have not quite figured out how to use my certificate as a caregiving consultant. However, I have enjoyed doing volunteer work and I am grateful to have met some terrific people who, tragically, are experiencing, ALS as patients or caregivers. This year, I began a club in my school that I intended for students who are caregivers for ill family members or even just for siblings. It is shaping up to be a club of caring, and somewhat shy, kids who need to find themselves and are interested in volunteering. So, in a sense, I am their caregiver! In all of these situations, sharing our experiences is emotional and powerful.
  • 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’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 old and new friends. 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. However, 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 Walt Disney and all he created for providing me with entertainment, inspiration, motivation, joy and opportunities to reflect and sort through my feelings. 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. Please feel free to use the comment space to share your own expressions of gratitude. You will likely find it comforting and encouraging.

Happy Thanksgiving.

With all good wishes,

Abby

 

Happy Birthday, Mickey Mouse!

Dear Mickey,

Happy 91st Birthday!

You may turn 91 today, but you are the eternal child who brings out the inner child in all of us. Walt Disney said to remember that it all started with a mouse, and what a special mouse you are!

In the pre-ALS days, 2006

I miss my mom and Ben today. They would surely have joined in the festivities. I must admit that I feel pretty lonely at times like these. But, I’m celebrating the long history that we have and remembering wonderful, whimsical times with and about you.

Though you’re a few years older than my mom would have been, she loved you from the time she was a child and she passed that love on to me. She was in her 50s when she and my dad went to Walt Disney World for the first and only time, and without me! I will never forget her phone call, giggling as she exclaimed, “Abby, I met Mickey!” This picture was taken on that day, and it is my favorite picture of my parents because, for me, it captures my mom at such a happy moment with her inner child aglow, and my dad was so amused. When I picked them up at the airport, my mom deplaned like the other children, unabashedly carrying a big Mickey Mouse and Epcot Figment in her arms. My mom was the consummate child at heart, and I get that from her!

Mickey Mouse, Walt Disney World, Disney

My parents with Mickey in 1987

When I first started dating Ben, he was not as obsessed with Disney as I was. That changed quickly, and our first dates often began with a stroll through the Disney Store that was near the office where we worked and met. We went to every new Disney film on opening day and we practically studied the Disney Catalogs, which, sadly, are no longer published. I found several copies that he kept because he loved the covers and I’ve kept those.

We always treasured our visits to Walt Disney World, but after Ben’s ALS diagnosis, we immediately booked a trip to Walt Disney World, and we were so fortunate to be able to go four more times. We didn’t know what we were dealing with, or how much time we had, and we wanted to go to the place that made all our worries disappear, at least temporarily.

Mickey Mouse, Minnie Mouse, ALS, Walt Disney World, Disney

Epcot, Walt Disney World, Halloween 2012

I admit that I was the one who had to greet all of my Disney friends. But, with you it was different. Ben always wanted to see you (and Minnie). And, after his ALS diagnosis, it was emotional and tear-filled. With an ALS diagnosis, we wanted and needed to feel the pixie dust, and more than once I asked you for some magic. I do remember that a sensitive cast member saw that Ben’s meeting with you was deeper than just seeing a favorite Disney friend. As we left, he quietly handed me a “ruby” that he told us was found by one of Snow White’s dwarfs in the mines, and he said he hoped it made our wishes come true. I still have it. It may not have fulfilled the wish that ALS would be cured, but I still believe that it helped us to create many wonderful memories. I thank you for that.

Mickey was always there to help Ben.

For as long as he could, Ben would insist on walking to stand in his pictures with you. It was truly touching when you spotted Ben in the electric wheelchair, helped him up and escorted him to the area where photos would be taken. He rode up to you when he lost the strength in his legs. It was then that I was hit with the reality of his situation. It might seem strange that this moment was a revelation, when I was living with his ALS. But, living with something didn’t mean I really reflected on the entire situation. We adapted to the issues as they arose without really looking at them as milestones in the progression of the disease. Deciding that he could no longer walk up to you was a sign that ALS was winning the battle. But, Ben also had an incredible attitude, never lost his smile and laughter, and he remained determined to engage in life, especially with you at Walt Disney World.

Mickey Mouse, Minnie Mouse, ALS, Walt Disney World, Disney

Mickey’s Not So Scary Halloween Party 2012

You and your friends brought us a lot of joy at very trying times. You welcomed us into your kingdom and gave us fantastic memories. Since he has been gone, you have continued to entertain, console and inspire me. I was so happy to see you and Minnie when I returned to Walt Disney World back in October. Although sadness loomed due to Ben’s absence, a hug from you let me connect with the past, feel secure in the present and know that I can count on you when I hit bumps in the road in the future. That’s quite a gift to me, but it’s your birthday, so I would like to shower you with tremendous gratitude, loyalty and love.

Happy Birthday, Mickey. May you always continue to be the spark of hope, inspiration and happiness for children of all ages.

I will always love and thank you,

Abby

 

 

What Edna Mode Didn’t Know About Grief

Edna Mode, The Incredibles

There are times that I know exactly what I want to write about. There are times when I have a plan but an event arises that causes me to write about something else and postpone my original post. For the past couple of weeks, with my birthday and Halloween as events that literally haunt me, I was struggling with so many thoughts and emotions that I couldn’t quite organize my thoughts and simply did not want to fight with myself to make sense of everything I was feeling. I kept rereading my posts from previous years and thinking about this year and how it is different, and suddenly this quote by Edna Mode stuck out to me: I never look back, darling. It distracts from the now. This is a quote that will always intrigue me and yet, as much as I love Edna and her indisputable fashion sense and see her point, I disagree.  Looking back has its value and significance. Rereading my blog posts and revisiting milestone dates over the years, as well as moments in caregiving and grief, has allowed me to reflect on how far I have come and also where I can continue to grow as a person. This was particularly important to me at this time.

October is always a challenging month because aside from my birthday and Halloween being a holiday that Ben and I adored, Ben even proposed to me on Halloween at Walt Disney World! I still avoid my birthday to a large degree, and I have wondered if I would ever be able to feel the fun of Halloween without Ben. I did not know if I would ever be able to return to Walt Disney World without Ben. I knew it would not have been wrong to return, but it didn’t feel right.

This was my fifth Halloween without Ben. It was last year that I was finally able to go through our collection of Halloween decorations, many from our last trip to Walt Disney World. I chose to display a couple of things, and I got a few new things in case being surrounded by the old memories was too difficult. It was interesting to me that a Halloween countdown calendar figurine, which I reluctantly displayed, proved to be very comforting. This was something that I got for Ben as a surprise. I had placed it on his desk for him to see when he woke up and was situated at his desk by his home health aide. He loved it and thought it was hilarious to count down to Halloween. I thought that I might be too unnerved by the idea of counting down time, since Ben’s battle with ALS seemed like a countdown in his life, and the memories of giving it to Ben when his ALS was progressing more rapidly. But, unpredictable as grief is, using that countdown calendar and saying a few words aloud to Ben every morning, has continued to bring a smile to my face. Then, I play the little wind-up music box that plays “Grim Grinning Ghosts,” from Walt Disney World’s Haunted Mansion, which I purchased last year because it reminded me of Ben and I know he would love it. He always said that once he was gone he would be a grim grinning ghost. These things and rituals, including writing blog posts, help me to look back on my memories and see that I am slowly and steadily gaining control of my present.

Our Halloween countdown calendar figurine

I do love to remember the many wonderful Halloweens that Ben and I spent in Walt Disney World. I am most proud of our last Halloween at Walt Disney World, because it was filled with so many surprises that I had arranged for Ben. I was July, after all, so arriving at our hotel room that was decorated like a haunted mansion was a true surprise for him! To read about that visit, please click here. I continue to play the soundtrack to the “Boo To You” parade from Mickey’s Not So Scary Halloween Party. Ben loved that parade even more than I did and I loved to watch his face at the sight of the first float. Was it living in the past? Yes, for a while, and that was important to me. I needed, and still do, to vividly hold close to my heart those wonderful, romantic and whimsical times. I also needed to remind myself that although I didn’t always do things as I would have wanted, I loved and dedicated myself to Ben and always tried to be the best caregiver that I could be. By reliving memories, I keep his spirit alive.

ALS,Caregiver,ALS Awareness Month,Walt Disney World, Mickey Mouse

2011- Mickey’s Not So Scary Halloween Party. I held Ben on one arm and Minnie held him on the other!

Something that stood out to me from a post I wrote in 2017 was that I referred to myself as more of an observer than a participant in Halloween. That was something profoundly true about my entire life after Ben left this world. For a while, I went through motions and floundered, not engaged in life. I accepted invitations to socialize but ended up feeling terribly alone and lonely. When Halloween arrived, I lived in my memories and grieved the Halloweens that Ben would not have and that we would not enjoy together. I lost myself in our photos and videos, just as Ben had done throughout his illness, crying for the loss of Ben, the life we had and the life we would never know. I brought candy for my students and enjoyed seeing the costumed kids on the streets, but I did not take part in any festivities. Last year, I baked my signature Halloween cookies, something Ben enjoyed watching (and eating!). Baking and decorating cookies is like my therapy, so I was able to get lost in memories and the deep connection to Ben and to my grandma, who taught me how to make my great-grandma’s recipe. Grandma really would be delighted by how much I have done to decorate them. Still, emotionally, I was not a part of the holiday. I was trying to keep my Halloween spirit by recreating rituals that existed for Ben and me, but past was conflicting with present. I don’t know what I even expected or wanted. As I reflect on the past few years, I think I can say that the fact that I did question how and when I would step back into the world of the living indicates that I did not want to stay in the past. The fact that I do look back at my posts to see if there have been some shifts, and hoping to see them, says that I am ready to make those shifts. Edna makes a point in that if I had only lived with my memories, I would not have even begun to consider how to tiptoe back into the world of the living and thoughts of reshaping my life. I had to find a way to look back, be present AND look ahead, and in grief that is a daunting task. It could only be accomplished in my own time and that’s always my advice to those in grief who ask when things will change or how long they should grieve in any manner. I went with the flow of my emotions (and, truth be told, the flow of the tears). I didn’t fight feeling bad and I didn’t fight feeling okay. Now, I don’t fight feeling downright happy either.

My photo collage calendar is filled with Halloween memories, especially for the October-Halloween memories!

I came to terms with not knowing if I would ever return to Walt Disney World for Halloween and being okay with leaving it as a treasured memory that just belonged to Ben and me. However, last month, thanks to my friend Monica and her two amazing daughters Abby (my namesake!) and Andi, I was able to return to Walt Disney World and to Mickey’s Not So Scary Halloween party. Please click here to read about that experience. I was nervous about how I would feel being back without Ben, but I was looking forward to having a very different kind of experience with friends who are family. We did have a truly magical and, for me, a kind of spiritual experience. There were many times that I shared my memories and there were times that I took some quiet moments to pay tribute to Ben. I even took the opportunity to thank Mickey, Minnie and Buzz for giving Ben such joy during his battle with ALS when we visited Walt Disney World. There were laughs about our silly adventures, as well as tears shed for missing him and grieving the time he was cheated on this earth and we were cheated of being together. There were photos I enjoyed having with everyone else, and a few that I needed to have by myself because I had them with Ben and I needed to show myself that although things were different, I was still okay and Ben was still with me. What I learned was that it was a comfort to be able to conjure Ben and once again be a part of Walt Disney World and its most special Halloween celebration. I was part of the planning and the choices, I laughed and had fun, and saw things through the eyes of my friends, knowing that Ben was still a vital part of our trip. Although at times I felt like I was watching myself as I reacted to the experiences, I was not just a spectator, I was one of the happy partygoers. I was back in the Disney magic, singing and dancing along with “It’s a Small World,” just as I did with Ben and still having a fantastic time in honor and in memory of him and of us but also in celebration of life and the gratitude I have for such wonderful friends.

Looking back and being happy in the now!

I was not certain before I boarded the plan to Orlando, but I was ready to return. I was also well supported. Being able to look back and take that love and those memories with me allowed me to embrace the now rather than just watch it go by.

Sorry, Edna, darling, you may understand fashion, but you don’t understand grief.

Never losing sight of that I’m really not alone (and I don’t just mean those ghosty ghost buddies).

Happy 52nd Anniversary to The Jungle Book- With Thanks for Its Lessons on Caregiving and Fighting the Shere Khans

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

Today marks the 52nd 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! 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. How about you? What do you consider the important skills of caregiving? Are you more Bagheera or Baloo?