Lady And The Tramp and The Hunchback of Notre Dame- Lessons on Cherishing Memories and Living Life

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Today is the 64rd anniversary of the release of Disney’s Lady and the Tramp. It was always a favorite of Ben’s and mine. We actually loved to sing the “Siamese Cat Song”; in fact, I used to sing it to my first cat, Tiffany (but she preferred “Born Free,” to which she actually meowed along!)

A poignant quote came from Tramp to Lady, when he told her, “Aw, come on, kid. Start building some memories.” I am always drawn to quotes about memories because memories played such an important part of our lives when Ben was fighting his battle against ALS. Memories became increasingly significant to Ben, particularly as he became more homebound. He loved to look at our photos and videos from Walt Disney World and to listen to the theme park music soundtracks. We could do that for hours. It was my motivation for designing the photo calendars, throw, shower curtain and towel (click here to read more about them)– Ben was surrounded by our photos everywhere in our home. It’s nearly three years since he’s left and I remain surrounded by those things. They are a comfort for the memories the photos hold and for my memory of the happiness that I gave to Ben with those gifts.

Dessert at Tony’s Town Square Restaurant- The Lady and the Tramp-themed restaurant at Walt Disney World. The Lady and the Tramp drawings were done with caramel- pretty fabulous!

We were so fortunate to be able to visit Walt Disney World four times after Ben’s ALS diagnosis. Each time, we tried to recreate our favorite memories, attending our favorite shows and visiting our favorite attractions. We did, at times, lament the attractions that Ben could no longer ride. But, we laughed that we could take the “It’s a Small World” boat repeatedly because there was never a long line and we got a boat to ourselves. Ben’s attitude was amazing. He focused on what he COULD do and, thanks to the amazing Disney cast members, we could do almost everything.

Recreating memories was, however, a tricky endeavor. Given Ben’s physical changes, it had the potential to be incredibly fun or incredibly sad. However, we were so grateful to be able to return to a place that was so important and filled with joyful memories. At Walt Disney World, we were distracted by the excitement and caught up in the fantasy. Ben loved and frequently commented about that. Once home, when Ben looked at photos, he scrutinized how he looked and how his abilities had diminished from visit to visit. For me, looking at photos is sometimes filled with splitting my world into pre-ALS and post-ALS distinctions and observations. Still, more than the physical changes, I see the joy on his face.

Our final visit to Walt Disney World in 2014 was uniquely memorable, not only because we were not sure that we would ever get there again, but also because it was filled with the creation of new memories. Frankly, I was worried that Ben would be disheartened at not being able to do a lot of the things that we used to do. Also, he could not eat many foods, so going to the restaurants that we always loved might have been an upsetting experience. So, I organized several surprises- new and different  events that gave us the opportunity to create new memories. My plan was a resounding success, which makes me so proud and grateful. I wrote about our visit in a prior post, which you can see by clicking here.

Walt Disney World 2002, the pre-ALS days. We didn’t kiss over spaghetti, but we did kiss Eeyore!

Ben and I had 16 years and a dozen visits to Walt Disney World, all filled with wonderful memories. When I was the caregiver of my dad and Ben, those memories sustained me and took me from one Walt Disney World visit to the hope of another, and I lived vicariously through my friends, reading about their adventures on Facebook and occasionally, and proudly, posting photos of Ben and me at Walt Disney World or out in our neighborhood when he was still able to ride his scooter. Our friends did like to see him out in the world. I immersed myself in those memories for some time after Ben died. I know that some people think that this blog is a way to stay hidden in those memories and in the past, but the perspective I gain and thoughts shared with other caregivers in this writing process lead me forward.

Coincidentally, as I reflect on the importance of my memories, I realize that today is also the 23^rd anniversary of the release of Disney’s The Hunchback of Notre Dame. I think about what the gargoyle, Laverne, told Quasimodo: “Life is not a spectator sport. If watching is all you’re gonna do, you’re gonna watch your life go by without ya’.” This quote holds an important message for me. I think that one of the most difficult things for me was when people told me it was time for me or time to take care of myself.  I don’t really like to put the spotlight on myself. It was particularly difficult to go out and be distracted and even somewhat happy, just to return to an empty apartment and reminded of the loss and alone-ness, as well as guilt for even trying to enjoy myself.I preferred to put my energy into helping Ben relive and create new memories and, after he left this world, I took pride and comfort in thinking about those memories. The truth is that I will always love to visit with my memories of Ben, the good and bad times. But, my memories don’t have to end there. I can delve into new adventures that will become a part of my treasure trove of beautiful memories. I do not have to live vicariously through other people.

The Hunchback of Notre Dame
1996 Walt Disney Pictures

A sadness looms over my summers because they represent the most difficult times in Ben’s battle, and ultimately when he succumbed to ALS. However, I proactively made plans to do things I love: travel to see my friends, take part in some animal adventures, do some volunteer work, and continue to work on my blog while formulating new ways to reach out to caregivers.

Although sometimes I do prefer to be a spectator in life and to get caught in fantasies of what I think I would like my life to look like, I don’t want my life to go by without me. It helps me to  find peace in the knowledge that Ben’s spirit will always accompany me as I follow my life’s paths, make some dreams come true and make new memories.

My photo collage calendar filled with wonderful memories and new events that will bring new memories. where Ben will be present in my heart

Happy Anniversary “The Incredibles 2”: Tapping Our Super Powers in Caregiving and Grief

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July 2014 at Walt Disney World

Today marks the one year anniversary of the release of Disney’s The Incredibles 2. The Incredibles hold a particular place in my heart because Mr. Incredible was one of Ben’s top three Disney buddies, along with Buzz Lightyear and Sully.

Because of this, and since it was our tradition, it was especially important to me to see the film on opening day. I remember that I had my little cry in the theater as the film began. Where I usually feel Ben’s presence at these films, at this film I profoundly felt his absence. I was angry that he did not have the chance to see this movie. Grief had brought a lot of emotions, but until this point, I can’t say that I had felt anger, despite often feeling frustrated that he was cheated of so much of life. I went on to feel more anger later in the summer when I visited the Georgia Aquarium, another place that Ben would have loved. There are certainly more profound life moments that Ben is missing and will miss that I should probably be more angry about, but sometimes the little moments make a tremendous impact.

In the past year, there have been more Disney films. Each one comes with sadness and acknowledgement of Ben’s physical absence but spiritual presence. However, I have also seen some growth in my perspective and experience with grief. I have noticed that I no longer debate with myself whether I can and should enjoy myself. The experiences are a time to focus thoughts on Ben and good memories. This seems to, on some level, alleviate the deep sadness and loneliness. It’s respectful of him and maintains the Disney bond that was such a strong part of our relationship.

This blog is a clear reflection of the way I look to each Disney film for enlightenment, and hopefully a quote that will carry me forward or give me perspective. I like to be able to share these thoughts with other caregivers with the intention that they will validate, inspire or comfort. The Incredibles 2 did not disappoint. The film actually has a lot of messages about inclusion, diversity, fighting for justice, family and love. I do remember the audible expressions of agreement when Dicker said, “Politicians don’t understand people who do good things. That makes them nervous.“

Interestingly, the quote that resonated with me was very appropriate for caregivers, and for an opening weekend that included Father’s Day. Edna Moda told Mr. Incredible, “Done properly, parenting is a heroic act. Done properly.”  I was so fortunate to have had two devoted and loving parents. As a public school teacher, over the years I have seen many children who are not parented properly, in fact, they are barely parented at all.  Good parenting is indeed a heroic, selfless act of love. The same came be said for good caregiving.

As a caregiver, I often questioned my abilities, especially when I was struggling with exhaustion, sadness and patience with Ben when he was stubborn and demanding. But, like any other caregiver, I put my emotions and feelings aside, or, at least on hold, and trudged on because the immediate needs of caregiving are not negotiable. Phone calls abruptly ended, activities were thrown to the side, chores ignored (well, I can’t say I minded that very much) as I attempted to create order amidst chaos, calm when he was panicked, and peace amidst the devastation of watching Ben deteriorate and suffer, physically and/or emotionally. Like all caregivers, I also ran interference among medical professionals and other related staff, as well as family and friends. I provided spirit boosts and levity and also administered difficult doses of reality, as tactfully as possible.

It certainly wasn’t my goal as a caregiver to be heroic and I don’t think that caregivers generally perceive themselves as heroes. We probably spend more time following Dory’s advice to “just keep swimming.” As a crybaby, I’ve never seen myself as heroic- at any point in my life- which is why, I think, I was puzzled when people told me that I was brave. Ben was brave, I was along for the ride, trying to be helpful and, a good deal of the time, not sure if I was much of a success. My insecurities made me feel much less than a superhero. However, I can attest that I definitely earned the Wonder Woman t-shirt Ben got me after I managed to grab him and keep him from falling off the bed!

In the film we are introduced to new super hero, Voyd, who asks Mrs. Incredible/Elastigirl, “How do you balance the superhero stuff with the life stuff?” Indeed, that’s a very important consideration for caregivers. For me, I constantly struggled with balancing the responsibilities of caregiving against a full-time job, daily life chores, relationships with friends and family, the emotional strain of losing the life Ben and I had, and knowing that ultimately, I was going to lose Ben. In retrospect, I think the balancing act IS the superhero stuff.

Young Dash tells his dad, Mr. Incredible, that he wants to fight bad guys because “It defines me.” I can say that caregiving defined me for several years and I found that it is a significant part of who I am and how I see myself. I have written about how I floundered when I was no longer a caregiver, until I found myself again through blogging, volunteering and trying to support other caregivers. Although I would rather not have discovered this through the illness and loss of my dad and Ben, I feel like I have identified caregiving as my super power. Unfortunately, I was not able to defeat cancer or ALS, but my dad and Ben always felt cared and advocated for and loved, and that is incredibly powerful. I did not see it while I was actively caregiving, but time and distance have provided valuable perspective.

Mr. Incredible at Walt Disney World’s parade, 2014.

Mr. Incredible summed up well the life of a caregiver when he said: “How do I do it? By rolling with the punches, baby!” I can picture Ben smiling and nodding, because, in actuality, both he and I rolled with the punches. I am still in awe of how well he rolled with the severe punches dealt to him by ALS. I guess we were both super heroes, albeit without the cute costumes.

I highly recommend The Incredibles 2. It’s quite fun and fantastic and offers unexpected words of wisdom for caregivers and everyone else. Post your thoughts! I look forward to reading them.

Ben as Mr. Incredible- Part of a birthday collage that I made for Ben. When it came to battling ALS, Ben was indeed a super hero!

Where Do I Go From Here? What Would Pocahontas Do?

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Where Do I Go From Here?
Written by Marty Panzer and Larry Grossman
Performed by Judy Kuhn as Pocahontas

The earth is cold
The fields are bare
The branches fold against the wind that’s everywhere

The birds move on
So they survive
When snow so deep
The bears all sleep to keep themselves alive

They do what they must for now
And trust in their plan
If I trust in mine, somehow I might find who I am

But where do I go from here?
So many voices ringing in my ear
Which is the voice that I was meant to hear?
How will I know?
Where do I go from here?

My world has changed and so have I
I’ve learned to choose
And even learned to say goodbye

The path ahead’s so hard to see
It winds and bends but where it ends
Depends on only me

In my heart I don’t feel part of so much I’ve known
Now it seems it’s time to start
A new life on my own

But where do I go from here?
So many voices ringing in my ear
Which is the voice that I was meant to hear?
How will I know?
Where do I go from here?

May was a bit rough for me. May is ALS Awareness Month. Milestone dates and occasions are always significant. Even though it is not a milestone in Ben’s personal journey with ALS, it is an important time for me. I want and need to participate in the month to raise awareness of ALS, but I never feel like I really make a difference. I’ve been questioning so much about where I am and where I should be in my life. I feel like the sharpest pangs of grief have begun to subside and I have wanted to think that things have been steadily improving. And they have been improving in many ways. Unfortunately, the questions haven’t really ended, they are just different. Now, I question what I should be doing in terms of moving forward, in terms of my relationship with ALS, in terms of grief. Where do I go from here?

There is so much that resonates in this song. Since Ben “left,” as he referred to dying, I have grappled with where to go with my life. I stopped questioning how I survive after I lost my mom, which was my first major loss and was especially earth-shattering because we were so close and it was sudden. The first year, I went through motions. Just like animals Pocahontas described how the bears instinctively know what they have to do from season to season, I just kept going through motions, sometimes instinctively, sometimes lead by others, but never really thinking. Now, it is nearly four years since I lost Ben, and although I have gotten back on track and know that I have much to be grateful for, the setbacks  really throw me and I am frequently anxious about my plan for the future and I rely on a wealth of wonderful memories to sustain me. When it comes to the future, there are people who are fine to say that they put things “in God’s hands.” I have never been one of those people, despite being a person who does have faith.

I have done a good job of reclaiming the things I always loved to do. I have resumed active theater-going, socializing and I even travel a bit. Still, there is an anxiety. I feel like I don’t have a strategy for my life. There’s a lot of worry and emotional analysis. There is also judgment. I have had to deal with the judgment of others, to my face or behind my back, but I also judge myself. Am I balancing past, present and future? How do I effectively help others? How do I best help people with ALS and their caregivers? Does that keep me in the past? How do I maintain my connection to the past and to Ben’s journey with ALS while forming a new life and hopefully finding love again? Will I find love again or will I be alone? As much as I would like to find a new relationship and have that kind of love, I don’t seem to have found a good strategy for getting there. Each night, I look at my photo of Ben that is my laptop background, I say good night to him, and wonder if I will ever find someone who “gets” me the way that he did. He doesn’t have to be a Disney prince, either. No matter how good I feel about the strides I’ve made, and no matter how many happy days I have, there is an uneasiness that keeps me from feeling contentment.

While some people think I should put more distance from the past and focus more intently on my vision for the future, being by Ben’s side as he bravely battled ALS changed me. Just as my dad’s cancer began to progress and Ben was diagnosed with ALS, I was launching a pet souvenir business, Pets en Voyage. I slowly put it aside because I couldn’t juggle full-time work, full-time caregiving and building a business. The business was a dream come true for me, and one Ben and my dad, the consummate dog lover, were so excited about. I always said that I would come back to it, but whenever I begin to revisit it, I find it a painful reminder of those days of illness and chaos. I am not letting go of it, but cannot seem to fully embrace it again, either. Not yet.

I was profoundly influenced by my role as a caregiver, and when I lost my dad and Ben, and I lost that role, I did lose a big part of myself. I feel most comfortable when I find ways to tap into that side of myself. This blog has been one way to sort out my experiences and spread the word about caregiving and ALS. I have been touched by the connections I have made and comments I have had from cALS (Caregivers of people with ALS) and pALS (people with ALS) in response to my posts. I was inspired by earn my Certification as a Caregiving Consultant but have not yet figured out how to use it more effectively, though I participate in various online ALS and grief support groups to lend an ear, share my experiences and persistent questions, and offer ideas to those currently struggling with caregiving.

When I was a caregiver, my role was clear: the goal was to keep Ben comfortable and get him the help he needed. There might have been twists and turns, and a lot of curve balls, but I had to come up with plans, and then back-up plans! Now, I’m just not sure of where to go and what to do for myself. What I know, and what I learned as a caregiver, is that I am a born teacher and caregiver. I also saw that I could be a strong advocate for my dad and Ben, but I did not seem to know how to use those skills for myself.

As a teacher and someone who spent more than 30 years in the field of arts and education, I love kids and could not help thinking about how difficult it must be for children to watch a parent or other family member navigate ALS and take on caregiving responsibilities. I have felt that my background could be useful to children who are affected by ALS in their families. A while back, I was able to collaborate with my local ALS chapter to conduct a small workshop for kids who had a parent with ALS. We did crafts, ate pizza and ice cream and talked. Click here to read  my post about that experience.

Earlier this month, I had the supreme privilege of working with Hope Loves Company, an organization dedicated to supporting children whose families have been affected by ALS (click here to visit their web site). Hope Loves Company runs camps for children and their families- it’s a special opportunity to get away, participate in all kinds of activities, from hiking to fishing to music and crafts. Also, it is an opportunity to be surrounded by other people who share, understand and can commiserate about the experience of ALS and its impact on our lives. I was a facilitator of a workshop where the children made scrapbooks- some brought photos from home and we also printed photos from their activities during camp. I believe that going through photos can be a very valuable process- it’s a time to relive memories and remember our important relationships- and I was happy to hear the stories that the children shared with me. It was fun and meaningful, and it felt like I was exactly where I should be. I look forward to continuing my volunteer work with this wonderful organization.

It feels good to me to work children in this way. I want and need to follow a path that lets me discover ways to reach out to young people affected by this disease, but also to young caregivers in general. I’m just not sure exactly where to go or how to get there.

Now it seems it’s time to start
A new life on my own

But where do I go from here?
So many voices ringing in my ear
Which is the voice that I was meant to hear?
How will I know?
Where do I go from here?

I have lots of ideas, but I’m a worrier by nature, so I tend to identify the obstacles before I see a clear path. While it’s probably not terribly realistic that I will resolve everything during my summer vacation from teaching, it’s my plan to address ways to expand my work and relationship to ALS. Summer is always strange because it marks another year that Ben spent in the hospital and then left the world, so it’s good to have a focus. It’s especially meaningful to make that focus something that relates to him. Yes, I keep the dating thing on my mind, too, but that kind of strategizing seems to be more daunting to me.

I do welcome ideas and brainstorming, so please feel free to comment or email if there is a project you’d like to consider or implement.