Happy 52nd Anniversary to The Jungle Book- With Thanks for It’s 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?

 

Reflections on Returning to Walt Disney World, Friendship and Getting Unstuck From Grief

It’s taken me a while to sort through my feelings and experiences during my return a couple of weeks ago to Walt Disney World for the first time since I lost Ben to ALS. The last time Ben and I went there together was in 2014, and he passed away in 2015. My very dear college friend, Monica, and her two daughters very generously gave me the opportunity to return and to pay tribute to Ben and to my cat, Disney. While some might find it odd to include Disney with Ben, it is important to note that the way I was raised, pets are family, and Disney was there for me throughout Ben’s illness and beyond. In addition to being her loving Mommy, I became her caregiver shortly after Ben left this world because she was diagnosed with several illnesses and required much medication and attention. Losing Disney back in February was losing the one who was closest to both of us and entrenched with us in the ALS experience.

Disney loved Marie and the Marie bed that Ben got for her birthday!

Halloween 2010, shortly after Ben’s ALS diagnosis. I had to tell Marie that she was Disney’s favorite actress!

I thought about all my favorite Disney and Pixar movies and quotes and their significance to this trip. Of course, it was Walt Disney who best summed up my time, but who would have thought that I would find it on a coffee cup at the Polynesian Hotel?! He said, “I love the nostalgic myself. I hope we never lose some of the things of the past.” He also said, “We keep moving forward, opening new doors and doing new things.” This trip represented a combination of nostalgia and looking ahead and it represented a milestone in that I was able to go back and step forward.

It was nerve-wracking to gear up for the visit and I was caught between excitement and fear of the emotions. I flew on a different airline, which had me nervous because I never handle flying particularly well, but at the same time gave me a sense of relief that walking exactly the same path we took might have been too sad.

I met Monica, Abby (my namesake!) and Andi at the Magical Express bus area of the Orlando airport. I got there first and had time to think back to all the times that Ben and I eagerly awaited our buses and how, after his ALS progressed, he even enjoyed going up on the wheelchair lift, treating it like another Disney attraction. Once I was with them, I felt grounded in family. They let me recount all my memories, so they got a glimpse of our experiences, but we also had so many whimsical distractions that helped us to create new ones. I am so grateful for that.

The new memories began at a new hotel, the Polynesian Village, which was one I’d always been curious about. I have to admit that as I took the first selfie with all of us, pictured below, it felt surreal to be smiling. I was caught up in the excitement and wanting to be happy. I almost felt like I was watching myself, keenly aware of my reactions to everything. Being with people who love me and whom I love, and who wanted this to be a special trip, made it an overwhelmingly joyful experience, even when the memories were difficult.

We started at the Animal Kingdom, where I took videos of the musicians, as I know Ben would have done. I do love to look at things through his eyes. Once I saw my friends Doug and Russell from Up, I was back in the magic. Then, we saw Rafiki and Baloo. You can tell me they are actors all you want, but if you’re going to go to the Kingdom, you must buy into the whole experience. I just do it with great zest!

I quickly realized that I was going to remember my times with Ben with every step I took at Walt Disney World. At times it was jarring, but because I was able to talk about him, I was able to bring him with me into my new experiences.

I think that aside from the actual attractions, it was in the photographs that I felt tremendous emotion. Posing for the Parks’ photographers, I remembered my photos with Ben. I was so delighted to capture special moments with Monica, Abby and Andi. In some cases, where I have photos of myself with Ben, I needed to take a photo by myself. I needed to have that visual statement that I was by myself and things are so different now. However, the photos are also proof that I am okay and that I am, as Christopher Robin told Pooh, “braver than I believe” and “stronger than I seem.”

Halloween 2012.

Still loving the Halloween decorations all around the Magic Kingdom! So many wonderful memories!

I have written about times when Ben got emotional around Mickey and Minnie, or Buzz Lightyear. I remember how Goofy stayed at Ben’s side until he made him laugh, and how Mickey and Minnie hugged him so dearly when he was overcome with emotion. I still believe that although his ALS wasn’t cured, the Disney magic was at work giving us several opportunities to visit and enjoy Walt Disney World after his diagnosis. This time, I had to thank these characters for the joy and strength they gave to Ben and to me. Yes, I am well aware that they are different actors, and that they are actors. But, they are Mickey and Minnie and Buzz and they are symbolic in our relationship and his battle with ALS.

For our first evening, Andi had arranged for us to have dinner at Hollywood and Vine, a restaurant that Ben and I enjoyed because the buffet gave us lots of opportunities to find foods that he could easily chew. My big surprise was that it has become a Halloween character event, and when we arrived, Andi told me that Minnie was right inside! So were Mickey, Goofy, Donald and Daisy! I can’t describe how heartwarming it was that Andi arranged this surprise! For so many years, I had been the one to make all the arrangements and create the surprises for Ben. Monica’s arranging this trip was more than I could ever have imagined, and to be the recipient of these gifts made me feel so surrounded by love and so fortunate. Minnie Mouse seemed to have been very touched when I told her that at a certain point in the ALS progression Ben would only try to get out of his wheelchair for her and Mickey and she hugged me and signaled that I am strong and that she loves me. It didn’t take long before I was completely in tears. Minnie is one of my very favorite characters- she is like a kindred spirit to me- and to connect over my memories and my grief was very powerful. Thanking her was something I needed to do.

July 2014, Ben was overcome with emotion when he greeted Mickey and Minnie.

This time, I was overcome with emotion thanking Minnie for all the joy that she brought to us at a difficult time.

Joyful, funny, silly times! Disney magic sprinkled with pixie dust (and very special friends!)

 

I was dreadful at the Buzz Lightyear Space Rangers attraction. Ben would have teased me mercilessly! It was great fun to enjoy the attractions with actual children- well, teens. Ordinarily, when there were announcements about holding small children by the hand, Ben would grab my hand and laugh.  Afterwards, we went to meet Buzz for photos in exactly the place where Ben and I had met him. I showed him the very brief video of when he met Ben and made a fuss over his Buzz Halloween shirt/costume. Of course, Buzz indicated that he “remembered,” and I got choked up as I thanked him. I took my photo alone (though I am firmly convinced that Ben’s spirit accompanied me) and then got fun shots with my friends, my family.

I showed Buzz the video of him with Ben. Of course he remembered!

 

 

Just Buzz and me, but I know Ben was with us.

New memories: Abby x 2 to the left, and Andi and Monica to the right of Buzz.

Being at the Magic Kingdom is truly my happy place and being able to dance and share the magic with loved ones adds a whole new layer of joy to my treasure trove of memories. I felt Ben beside me on each of our rides through It’s a Small World- yes, there were a few! Ben always joked that after he left this earth, that he would do two things: 1. Haunt me if I ever met another man; and 2. Be a grim grinning ghost at the Haunted Mansion! I fully expected that he would join us on the doom buggy, and I found that a comfort. Outside the mansion, we paid our respects to Ben, and to Disney, and even to Tiffany, my first cat who truly loved all of our Disney plush toys.

I couldn’t help smiling at the thought that Ben is a grim grinning ghost now. Not sure how Andi felt about that!

I was a little nervous about attending Mickey’s Not So Scary Halloween Party because it was one of our most treasured events. It made me so happy that they loved the Boo To You parade because Ben loved it so much that he often listened to the music and whenever he was annoyed, he would scoff, “boo to you!” I choked up as it begun and I couldn’t help but turn to Monica and say that it just isn’t fair that Ben wasn’t there to enjoy it. ALS isn’t fair. It’s never fair when terminal illness cuts short a person’s life. The Halloween party offered a few parallel experiences, including photos with Pooh and his buddies all dressed up for Halloween. I so clearly remembered posing for that photo with Ben in his scooter. I will forever admire his positive attitude throughout his battle with ALS. He would have loved the photograph below with the animation of the ghosts.

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

 

Although I relived some of the old memories, I had so many laughs and fun times, creating so many new memories. I do miss having kids of my own, so to share a lovely relationship with my friends’ children is very important to me and something I value tremendously.  It was special fun to stay at the park with Andi until midnight, where we were able to go on the Little Mermaid attraction two times in a row! Just to see the attractions and wander the parks through the eyes of the kids is something I could not have done without Monica’s arranging this magical trip.

ALS, Walt Disney World, Pooh, Rabbit,Caregiving

Halloween 2012 at Walt Disney World. We never met Rabbit (there was probably too much frolicking), but had fun with his 100 Acre Woods buddies.

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

I do find great peace, comfort and love in seeing signs of Ben’s presence and this trip was filled with messages that he was accompanying me. The first sign came at the Halloween party. I had been a bit disappointed that we were not going to meet Sully, because he was one of Ben’s favorite buddies and he was the first buddy we told when we got engaged at Walt Disney World one Halloween. Sully hangs out at Hollywood Studios. As we looked at the party map, I noticed that Sully was going to be at the dance party. Sure enough, I got to dance with him! Boo was also there and Ben always said I was like Boo because I followed my cats around so much, always wanting to pick them up. Disney loved it, but Tiffany hated to be held and Tinker Bell is not thrilled with it, either. In my mind, Ben had something to do with their being at the Magic Kingdom!

Halloween 2012. Ben was still able to get out of his wheelchair to greet his best buddy, Sully!

This time, Sully magically showed up at Mickey’s Not So Scary Halloween party!

Epcot will always be a special place because of how much Ben loved the freedom of riding his scooter and electric wheelchair through the World Showcase without having many attractions on which to transfer. I felt that it was perfect timing to be there on the very last night of the Illuminations fireworks show because that was a very moving experience for us. I listen to that soundtrack almost every morning- it’s beautiful. The kids went back to the hotel and Monica went with me to pay a special tribute to Ben and Disney at the UK pavilion, where Ben loved to listen to the live bands. The band wasn’t playing, but Mary Poppins was there. Later, Monica joined the kids to head to the Magic Kingdom but I spent the afternoon wandering Epcot and waiting for the final Illuminations. I visited the Boardwalk, which was our favorite hotel and where Ben loved to look out over the water. Some of the stores have changed, but I treated myself to a splurge of ice cream, as we always did, sat with my thoughts and had a little chat with Ben. I like to believe that Ben will now forever be able to watch those waters. I took a ride on the new Skyliner cars, which, sadly, are now having some problems, but which were quite fun. I took all of the photos and videos that I know Ben would have been taking, particularly when the Boardwalk Inn came into view. I met Joy from Inside Out, which was interesting because Sadness was supposed to be there but she wasn’t. I asked if she was too sad to drag herself to Epcot that day. I told Joy that I was having a day of joy and sadness, but her movie shows us that life is just like that, so it’s all good. She asked about the Tinker Bell ornament on my Magic Band and I told her that I have a cat, Tinker Bell. Joy signaled to the photographer to ask if I had pictures of Tinker Bell on my phone because she loves cats and Riley, in whose brain she lives, had a cat. So, there I was, the proud mama looking for photos of my baby girl to show to Joy! I returned to the UK pavilion just as the band arrived. I had just done a quiet little tribute to Ben and Disney when suddenly the band played the Beatles Twist and Shout and then their version of Happy Birthday. Those were the signs I needed to know that Ben was definitely with me. Twist and Shout was the first song that we ever danced to and Happy Birthday is the song that Ben called me to play every year when we were dating and then set up on his computer each year, even when he couldn’t be at his desk in the morning. We always went to Walt Disney World in October, for Halloween and my birthday, so I felt like he sent me that song. Some people don’t believe in signs, but I do, and these signs let me know that I was doing the right thing with this trip and with these tributes.

Below, a song I needed to hear from the band in the England pavilion that Ben loved so much. It definitely was a message from him!

I did purchase special light-up Farewell to Illuminations Mickey ears and I got my picture taken with the Spaceship Earth in the background. It’s always a bit lonely to do that, but it was a statement for me of how things are different now. As I waited for the photographer, a man I didn’t know came up and put his arm around me. The photographer asked if we were together and we laughed and said no, and as he moved on, he said, “but I didn’t hear you complaining!” I laughed and said he might have been my prince charming! I looked at the photographer, who was laughing hard, and said it’s all about the Disney magic. I’m hopeful that someday my (new) prince will come, despite Ben’s warning that he’ll haunt me! Maybe that guy was a sign that he’s on his way.

On our last morning, we had breakfast with Lilo, Stitch, Mickey and Pluto at the hotel. It is a lovely breakfast in a beautiful setting with Cinderella’s Castle in the background. It is a dear memory for me because although it was a schlep in his electric wheelchair from the Boardwalk Inn, Ben wanted to go because he knew how much I loved Stitch and that I had always wanted to go there. I snapped photos of Ben’s beloved Mickey shaped waffles, as he always did, and I think they tasted even better because he was such a vibrant part of the memories.

After a fun time with our Disney buddies, we headed to the Magic Kingdom. It was bittersweet to ride Pirates of the Caribbean and Peter Pan’s Flight, because they were the first that we had to leave behind because he could not transfer onto them. These were the only times I felt some pangs of guilt for my delight. I can’t find a way to reason it away, and although I was glad I went on them, if for no other reason than being proud of myself for confronting the grief, I was too keenly aware of the negative feelings attached to them and although they didn’t upset me, they don’t hold the same joy for me.

On our last day, we had an opportunity to meet Tinker Bell. I showed her pictures of my little Tinker Bell, whose little white paws she loved because she said they reminded her of the dandelions on her shoes! She asked if Tinker Bell is sassy like she is. It seemed a perfect way to end the trip, bringing all of my wonderful memories and this extraordinary gift of the present, to my current baby and hopefully, more dreams come true.

Tinker Bell loves her new little Sully, which I brought her to remind her of Ben.

This trip was an incredibly powerful experience of friendship, generosity and love. Winnie the Pooh said, “Good friends will help you until you’re unstuck.” I’m fortunate to have friends who have stayed by my side as I have come closer and closer to being unstuck. A very profound thank you to Monica, Abby and Andi for letting me see that, although bittersweet and even sad at times, I could return to Walt Disney World to embark on new, happy and laughter-filled adventures while feeling bolstered and surrounded by the love of Ben’s spirit and the presence of friends who are family. I will, once again, listen to Walt Disney’s words of wisdom and hold tight the nostalgia while moving forward and opening new doors.

 

Halloween 2011

On my own, but surrounded by a lot of love and guided by Walt and Mickey!

Advice From Merida About Bravery, Grief and Destiny

Merida at the Walt Disney World Magic Kingdom Parade, July 2014

 

Sometimes, I wonder if I am going to traverse the rest of my life missing the people I loved and lost and if I will ever be able to participate in life without attaching memories of them that add a shadow of loneliness. At those times, I also wonder if those shadows are still positive because of the good and significant times, as well as the love, they recall. For a while, I held myself back from doing things for various reasons: either it was too sad to do things without my dad or Ben, I felt guilty enjoying things that they would enjoy, or enjoying life at all, or I was so indecisive about testing my emotions that I just avoided situations. Sometimes, I’ve done things, like crossing Abbey Road, for Ben. I know that some things I do will make me cry but sometimes I need that, too. Grief is hard. Even when it shifts from the sharpest pangs, I feel like it leaves me in a kind of limbo.

I had an experience yesterday, and have an upcoming experience, which made me think of something said by Merida, from Disney’s Brave: “You control your destiny- you don’t need magic to do it. And there are no magical shortcuts to solving your problems.” I cannot change the pace or emotion with which I have dealt with loss, grief and delving into life. I will not know how I feel about doing things that I closely associate with my dad and Ben until I do them. I do feel in my heart that even though it’s difficult, making new memories will simply have to include my love for and memories of the people I loved and lost. Only I can make those decisions that will ultimately let me find myself and a real contentment and purpose.

Yesterday, I saw the new Downton Abbey movie. I absolutely loved the tv series, and I was eagerly awaiting this film. As I walked to the theater, my mind was flooded with memories. I started watching the series because my dad liked it. I thought it would be nice if I could talk to him about it. It did not take long before I got caught up in the story, and it surprised me that Daddy, who generally preferred documentaries, would like a drama with some soap opera aspects.

The seasons aired in the UK before here, so in America we were always behind in the storyline. Ben was homebound and loved to do research on the computer, so he managed to find the episodes that were airing in England. I was able to know what was happening before it aired here! Ben was so proud. It was a way that he was able to do something for me at a time when he needed so much done for him.

When Daddy was in the hospice, I had to catch a train back to the city before Downton Abbey aired, so on Sunday evenings, the nurses were kind enough to put the show on for him. He slept most of the time, but I thought it would be a pleasant comfort for him to see it if he woke up.

I wish my dad could have been at the film with me. I think he would have liked it. I think he would have admired the Countess Dowager’s attitude, though I won’t say why because I don’t want to give away any of the story.

I loved the film. It was like visiting with old friends. The setting and the costumes were magnificent and the story lovely. I laughed and cried. It was also like stepping back in time to when my dad and Ben were here. Once again, I missed them and I felt the weight of the void in my life.

I think the film experience is coupled with my mixed emotions about my upcoming trip to Walt Disney World. I haven’t been back without Ben. Next week, I will go with my dear college friend and her two daughters and we will actually do a little memorial for Ben and even for Disney, my cat. I’m so grateful to be going with them, but I am also anxious about being there among all my memories. It feels awkward to be excited about being there, almost like a betrayal of Ben. It’s difficult to look forward to enjoying the attractions that we had to abandon once Ben couldn’t transfer from his electric wheelchair. He had always told me to go by myself, which was so sweet, but it would not have been fun to know that he was waiting outside for me and it would have been too much of a foretelling of my future alone. As completely full of joy as I want to feel, I admit that I feel overwhelmed by conflicting emotions and worry of how I will feel once I arrive at what for Ben and me truly was our happiest place on earth.

I realized a long time ago that there are no shortcuts in dealing with grief. It has to run its course and I have to listen to my heart. Sometimes, things are easier and other times harder than I expect. I’m not afraid of tears. Missing my dad while sitting through the film today let me recall how much we shared and how I tried to make him comfortable when he was ill. I am not sure if it is my destiny, but those are the feelings that helped me realize that I am meant to continue to support other caregivers.

I wondered if I would ever be able to go to Walt Disney World, and I might have avoided a return, but my friend was so incredibly kind and generous to offer the possibility of a return and a different kind of a trip in which we would also pay respects to Ben.  I know that it will be emotional, but I also want it to be joyful. After all, Ben and I had so much happiness there. I have taken so many steps forward and my loved ones have been at my side. With this trip, despite my trepidation, I feel like I am bringing new people beside me while Ben and our memories come along in a different way. There might be some setbacks, but I feel like this opportunity came to me at this time because I am ready for it. As far as my destiny, I still am not sure what that is, and it is daunting to think that I control it beyond the pixie dust, but I know that with each step I have taken to reshape and enjoy my life, I am moving forward.

 

“The Princess and the Frog”: More Than Turning Frogs Into Princes, It’s About Looking Toward the Stars

The Princess and the Frog
Walt Disney Pictures 2009

I’ve been feeling Ben’s absence and presence a lot in the past few weeks. It stands to reason since August 26 marked four years since he left the world and everything involved in that and the whirlwind of starting a new school year brings back all of those feelings of turmoil. I’ve walked through Central Park and felt such conflicting emotions- I missed Ben and wish we had taken more walks together through the Park and yet I feel his presence and have little conversations with him as I’m walking. I do believe that the turtles are messages from him. Last weekend, just as I felt disappointed by the lack of turtles, several were swimming towards me! I had to smile.

Bethesda Fountain in Central Park, NYC. I make wishes and toss coins into the fountain each time I visit.

 

Just one of my little turtle buddies at Central Park. I believe the turtles are signs from Ben that he’s with me.

There are people who believe in the spiritual presence of people we’ve loved and lost and people who don’t. I do. I have gone to see a spiritual medium each year since I lost Ben. I went the first time because she was recommended to me and it was something I always wanted to do. I did not go to see her with specific expectations- I just thought it would be fun. In fact, it was a moving and validating experience. More than her words from Ben and my dad, I am very attuned to messages that I see around me that let me know that Ben and my dad are with me. I know that some people think that I find these things not because they are legitimate but because I interpret events in such a way as to comfort myself. That’s okay. Actually, it would be okay if I did that, too. I never underrate the importance of finding comfort.

Last week, I had a problem with my printer. I tried to fix it myself. I talked out loud to Ben, who always did these things for me. I researched the fixes on the internet and told him he would be proud of me. Unfortunately, I managed to lose all internet service because I did something wrong. I contacted the guy who now helps me with my computer issues. It is always difficult to watch him sit in Ben’s chair and do the computer work that Ben did and enjoyed so much, but he is understanding and very talented. In my quiet time I apologized to Ben for letting him down and not being able to resolve my own computer problem. In those moments, I truly feel in my heart that he is nearby. Still, it’s frustrating.

On Friday night, I attended a concert at Lincoln Center. It was a Jazz at Lincoln Center performance celebrating 25 years of democracy in South Africa. I was looking forward to being immersed in the music. When the concert began, I thought about how Ben had worked at Lincoln Center and often got us tickets to attend various events. Music was Ben’s lifeline. He said it saved him as a teenager. He taught himself to play some instruments and even did some arrangements for Latin bands. I thought of all of the questions I would have asked him, and how he would have watched all of the musicians with awe and admiration. Those are the moments that fill me with anger that he did not have enough time in the world to enjoy these things and that we did not have enough time together. For a while, there were tears for his absence. When I did relax a bit, I was able to feel enveloped by his presence. I know that seems strange to some people. I can picture him so clearly in his mind sitting next to me, but it’s a stronger feeling than that. I look at music more deeply, and watch the musicians more intently, because I like to see things through his eyes. It also makes him feel closer and reminds me of how much he remains a part of me.

I think about Ray the firefly from Disney’s The Princess and the Frog. His little friends in the Bayoo thought that he was crazy when he referred to the star in the sky as his departed lady, Evangeline. He sings a lovely song about how beautifully she shines in the sky. For me, that sweet little song says so much. Evangeline lights up the sky as a star and the good memories and the feeling that Ben is with me light up my world.

Ma Belle Evangeline
Written by Randy Newman
Performed by Jim Cummings

Look how she lights up the sky,
Ma Belle Evangeline.
So far above me yet I,
Know her heart belongs to only me.
Je t’adore, Je t’aime Evangeline,
You’re my queen of the night,
So still,
So bright.
That someone as beautiful as she,
Could love someone like me.
Love always finds a way it’s true!
And I love you, Evangeline.
Love is beautiful,
Love is wonderful!
Love is everything, do you agree?
Mais oui!
Look how she lights up the sky,
I love you, Evangeline.

There is some voodoo spirituality in The Princess and the Frog and Mama Odie, the Voodoo Queen, has a relationship with Ray and she doesn’t question his beliefs or visions of Evangeline and she encourages everyone to “dig a little deeper” to find out who they are and challenge their beliefs. When Ray died, all of his friends watched as a star flew across the sky and they knew in their hearts that Ray had joined Evangeline, just as he said he would. Ray found a lot of comfort in that star because, for him, it meant that Evangeline was with him.  I see turtles as those kinds of signs. But, sometimes I’ll hear a Beatles song at just the right time, or something will happen that only he and I would recognize, and I know that these thing are signs that he is with me.

I don’t really know where Ben is, though I do believe that, as he used to say, he probably is often one of the Grim Grinning Ghosts at Walt Disney World’s Haunted Mansion. I like to believe that our spirits will unite one day. In the meantime, just like Ray, I believe and see that he’s with me. It’s not always enough, and sometimes it’s painfully too little, and yet it’s a lot.

2011- The first time we went to Fantasmic!

What Alice Knew About Caregiving, Grief and My Identity

I saw this quote with an image from the Walt Disney Productions animated film, as I’ve shown here. In fact, it is from the book by Lewis Carroll.

 

School started last week. Two days of just the teachers and administrators and two days with the students. Of course, no teacher sprints back to school, but when my dad and Ben were ill, I especially  dreaded that day. In those days, some teachers knew not to even ask me how my summer was. They knew not to ask me how my weekends were! I would sit and observe everyone sharing their fun summer stories and just hope that I didn’t get asked questions so I didn’t have to shrug and get those sympathetic or pitying looks.  After I lost Ben, when I started in a new school, where only a couple of people knew me, I could just give a generic reply to strangers rather than reveal how difficult summers were. I’m not a terribly superficial person, so it felt like I was not really being myself, yet I was grateful to shed the image of the caregiver running in circles to tend to her dying dad and husband, or the woman grieving her losses. Last week, when asked how my summer was, it was a strange feeling to be able to respond with complete honesty and enthusiasm that it was great. I was keenly aware of feeling good and yet awkward about that answer.

Summer remains a time that is shadowed by the sad memories of Ben’s departure. As this summer approached, I braced myself for those memories but still made plans that I would enjoy. I am pleased, relieved and even proud that I truly had a delightful summer. It feels like an accomplishment. Still, it comes with a bit of guilt and confusion.

I sometimes wonder if my ability to fully immerse myself in life and joy means that I am distancing myself from the loss of Ben. Is it a lack of respect for Ben? Does it appear that way to others? If being Ben’s caregiver and grieving widow have been the ways I have defined myself for such a long time, who am I without those most important aspects of myself? Who do I even want to be?

Although I felt relieved to be able to smile and say that I had a great summer, there was so much emotion and history behind that seemingly simple response. People who have known me through all the difficult years know that it is a big step to be able to experience joy again beyond just having some good times. I am so grateful and appreciative that they are happy for me. For those who don’t know me, it is just casual conversation among acquaintances. Part of me is happy to be a new Abby without that sad history. Part of me feels that those are such vital pieces of who I am that to be unaware of them is not to really know me. Also, it feels strangely disrespectful if Ben is not somehow a vibrant part of the new Abby. It’s hard for me that I’m no longer part of Abby and Ben. By saying I had a great summer, it feels that I am not acknowledging the pain that did exist and continues to haunt me. It dismisses my ongoing struggle to achieve a balance between living in the here and now and taking Ben, and essentially, my past, everywhere in my heart.

Alice was right. I can’t go back to the person I was before the caregiving days and grief. Those experiences did change and shape me. People will not necessarily know my experiences. If they get to know me, it’s likely they will because Ben, and our journey with ALS are vital parts of the person I have become. This blog, my volunteering and my goals to work with other caregivers evolved from those experiences. All these things keep me heading towards the future but also keep Ben with me as I venture forward.

Who am I? In some ways, am still floundering to define myself. I hope that in time I will become more comfortable with myself without so much self-assessment and self-criticism. I knew myself best as a caregiver and person in grief, and the transition to a life without those prominent roles has been difficult.  Of course, grief does not really go away, though it shifts. The Abby from before my days of caregiving and loss has always lived within me during those rough years, but I am just not exactly sure who I am at this point in time. Maybe this is simply who I am, realizing that as we go through life, it’s okay that people will enter and exit and not necessarily know my history. I have yet to be comfortable with who I am in the present and as I look to the future. Maybe I need a looking glass.