Wisdom from Walt Disney on Moving Forward

Walt Disney, Walt Disney World

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

I guess with December 5 marking Walt Disney’s birthday, and the anniversary of his death just a week away, his quotes have been on my mind. This quote seems to resonate a lot with me this holiday season. This is my fourth holiday season without Ben. During the first holiday season without him, his loss was very raw, and on top of feeling that devastation, I found myself caught up in the memories of the holiday season of 2013, right before my dad died. That year, I observed the holiday season from car and train windows on my way to and from the hospital and then the VA Hospice in Northport, NY. Though I did decorate the apartment for Ben and me, there was nothing festive about our lives. The truth was that I did not get to really grieve for my dad because I was preoccupied with caring for Ben. At the same time, Ben and I both felt the immense weight of my dad’s loss.

My first holiday season alone was painful. I had always made a silly holiday card starring my cat, Disney, but I wasn’t really in a festive frame of mind. I decided to make a card that was a tribute to Ben, using the lyrics to “Auld Lang Syne.” Since then, I have kind of gone through motions around the holidays. I always put up my tree. I continued to put the tree ornaments that Ben loved exactly where they were when he was here, placed where he could see them from his desk. I have gone to see a couple of the holiday store windows, which are usually such a treat in New York City. But, it left me feeling empty and alone. I walked through the holiday markets around the city but felt sad, remembering how I rushed through them looking for something to bring Ben but not wanting to waste time because I had to get home to him. I have not gone to see the Rockefeller Center tree in all this time. These things didn’t feel fun and happy to me. They were painful reminders of my caregiving days and how Ben could not get outside to enjoy things with me and how I did not have time to myself. Last year I simply could not muster the enthusiasm to make a holiday card. I did take a photo of Disney, as I frequently do, and I emailed it to a few people, but I could not put on a happy face and pretend that I was feeling the holiday spirit.

This year feels different. I had to get a new tree- it’s purple, but Ben’s favorite ornaments still have their places of respect in tribute to him. Last weekend, on my way to meet a friend, I walked through one of the holiday markets- I was not terribly enthusiastic, but I also did not dread it. Yesterday, on my way home from school, I decided to go to Macy’s to see the windows. I was keenly aware of this change in my mindset. I also made the usual mental note that I am now able to make spur of the moment decisions to do things that I’d like to do, and although it didn’t exactly feel good, I did not feel the guilt that used to surround me whenever I did something that I was not able to do when I was caregiving or that I enjoyed with Ben. I still feel the loneliness, but it’s a feeling that I’ve integrated into my life that no longer keeps me from pushing forward.

Today, I took an “ugly sweater” cookie decorating class. Baking and decorating cookies is one of my favorite things to do. It’s like my therapy- usually a three-day epic event which thoroughly engages my attention and sense of whimsy. I’m happy that my friends love them. Ben delighted in watching me because it made me so happy and because his daughter was thrilled to get them. We carefully counted the number of each design, remembering how my grandma always counted the matzah balls she made because my dad would sneak into the kitchen to eat them. As I was walking to the class, I thought about how my life has changed. I can freely take classes now. I can feel the excitement of the holidays. Tomorrow, I am going to try to make time to see the Rockefeller Center tree. I am used to missing Ben, at the same time knowing that he is with me. I am more purposeful in my planning and more energetic. There are times when I get overwhelmed and I allow myself those moments of tears and loneliness. But, I am also able to enjoy activities and occasions and I welcome and embrace that joy, too. It’s a kind of emotional juggling act that I seem to be mastering.

The paths won’t be the ones I planned. Right now, I don’t have the purpose that I had as a caregiver. I don’t really know what awaits me, though I know that I would like to find love again and I would like to pursue my blog and pet business ideas. I know there will be bumps, and since I am a klutz, I don’t know how well I will navigate them. I have learned, however, that I will be okay. The good thing is that, as Walt said, I keep moving forward and discovering new things about myself and life.

Happy Birthday, Walt Disney!

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

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

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

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

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

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

Mickey Mouse, Walt Disney World, Disney

My parents with Mickey in 1987

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

People might say that I am sometimes a bit of a Pollyanna in my innocence, but it’s who I am. Yes, I do get disappointed sometimes, but it allows me to always see possibilities and to fantasize in a healthy way.

waltandmary

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

Agreed. The perfect quote. It was a mindset Ben and I needed as he dealt with ALS.

Walt Disney, Walt Disney World

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

I think that every caregiver would wholeheartedly agree with that.

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

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

Walt Disney, Walt Disney World

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

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

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

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

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

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

You’ve Got A Friend In Me- Friendships During Caregiving, Illness and Grief

You’ve Got a Friend in Me
By Randy Newman

You’ve got a friend in me
You’ve got a friend in me
When the road looks rough ahead
And you’re miles and miles from your nice warm bed
You just remember what your old pal said
Boy, you’ve got a friend in me
Yeah, you’ve got a friend in me

You’ve got a friend in me
You’ve got a friend in me
You’ve got troubles, and I’ve got ’em too
There isn’t anything I wouldn’t do for you
We stick together and we see it through
‘Cause you’ve got a friend in me
You’ve got a friend in me

Some other folks might be a little bit smarter than I am
Bigger and stronger too, maybe
But none of them will ever love you the way I do
It’s me and you, boy

And as the years go by
Our friendship will never die
You’re gonna see, it’s our destiny
You’ve got a friend in me
You’ve got a friend in me
You’ve got a friend in me

Last week, November 23, marked the 23rd anniversary of the release of the original Toy Story. Ben absolutely loved Buzz Lightyear and we both loved this film and its sequels. In the context of Thanksgiving and the film’s anniversary, I’ve been thinking all week about the lyrics to the song You’ve Got A Friend In Me.

The song applies to so many aspects of my life. It is almost a caregiving anthem. I was there for Ben no matter what, seeing him through the darkest days. As the song says, there might have been stronger or smarter people, but the love we had was stronger than those qualities. As Ben was more vulnerable and more dependent on me for help, I know that he worried that I would say that I could or would no longer be able to take care of him. In his heart, though, when the road looked rough ahead, Ben knew that I would never leave him and that no one would ever love or care for him the way that I did. The unique bond we shared in our romance, despite the tragic circumstances, was a supreme kind of friendship.

Thanksgiving is a difficult time because it is a painful reminder of the family I no longer have. To be more positive, I try to put my energy into reflecting on how grateful I am to have friends who have become my family. There’s good reason this song comes to mind at this time.

Friendships can help to sustain us. I consider myself fortunate to have known my best friend for more than 50 years and to have had my closest friends for much of my life. We have been there for each other through the good and bad times. Sadly, over the past several years, I feel like I needed my friends often- as my dad became more ill and as Ben’s ALS progressed, and then, of course, as I grieved their loss. My patient and devoted friends listened to me repeat the same issues without any resolutions, and despite any opinions they held, they did not give up on me or Ben. They were also there to help Ben, being my backup if he needed assistance when I was with my dad. They voiced their concern for me. They asked what they could do for us. I knew that, as the song says, “there isn’t anything I wouldn’t do” was the way my friends felt about me, and it was and is mutual. I always placed a high priority on being there for my friends, but I still was not happy being on the receiving end of the giving during this time. At the same time, it was a huge comfort to know that I could depend on my friends, and it is beyond heartwarming to see them cheering for me as I have more steadily and confidently moved forward.

Sometimes friendships last forever, sometimes they are brief but deep. Sometimes we make connections that touch our lives although they are not even actual friendships. When I was the caregiver for my dad and Ben, I experienced all of these relationships. There were the people who unexpectedly reached out with a kind word or helpful gesture. There were people whom I did not know very well who had helpful insight, were there to talk at just the right moment, or were simply genuine in their expressions of concern. There were even people I did not know well who were kind enough to keep Ben in their hearts and do the Ice Bucket Challenge or contribute to ALS causes and our fundraisers with their families in Ben’s honor. I will forever be grateful for those moments and people. It’s an important reminder of optimism and faith in humanity.

Friendships also shift over time, even during good times, and that’s natural. People move, they get involved with different activities, have families. Terminal illness and my caregiving definitely caused a shift that forced me to evaluate what I considered good friendships. Some people whom I thought were good friends proved to be terribly disappointing. These are the people who said they never called because they knew I was busy, or who did not really ask much but were extremely judgmental. They were people who wrote lots of niceties on social media but never actually reached out or demonstrated friendship.

There were also people who, when we did communicate, would tell me that they knew they weren’t being good friends, seeming to want me to excuse them. At first, I did console them and say that I knew they were thinking of us and would have been there if I’d asked. Eventually though, I felt no sense of responsibility to make them feel that they were great friends because it simply wasn’t true. I felt abandoned when I needed to feel friendship. I suppose I could have reached out and asked for help or support or just a friendly conversation to help me feel like I was connected to my life and friends beyond my caregiving world. It’s hard to do that when you’re feeling overwhelmed by life. That would have been a way to care for myself but I was not up to it. I needed people to step up to me. When they didn’t, it was hard to accept that I simply didn’t fit into the lives of some friends the way I wished or expected. In many cases, I have remained friends with these people, but I do not feel the connection that I used to feel.

Ben also struggled with friendships as his ALS progressed. There were a handful of people who were loyal to him throughout his illness. ALS is known to be an isolating disease and, indeed, a person with ALS (pALS) loses the ability to easily communicate. Ben managed to text through his computer. His speech became impaired and if it was too difficult for him to be understood, he gave up trying. The number of people who reached out to him steadily dwindled. He felt unimportant and abandoned, which was heartbreaking.

We’ve heard the expression that to have a friend you have to be a friend. Friendship is a beautiful gift to give and receive. I do have to remind myself  that everyone has their own definitions of friendship and people form friendships for a variety of reasons with many different expectations of giving and receiving friendship. Some people need their friends during difficult times and others withdraw. It’s also important to see a big picture: as I needed more than I could give while my dad and Ben were ill, my friends might have those experiences as well. We cannot always be there for each other. What we can do is communicate openly, honestly, and compassionately.

It’s not always easy to know how to be the best friend you can be. Sometimes, in the case of someone who is caregiving or who is ill, it means asking how you can be a good friend, or just being genuinely present and available to listen, validate and comfort, or to let your friend know that you are giving them the space they seem to want but that you are there for them when and if they are ready for you.

Through our actions and expressions of love and support, I believe and am so very grateful that my dear friends and I agree that
And as the years go by
Our friendship will never die
You’re gonna see, it’s our destiny
You’ve got a friend in me.