The Rainbow Connection- The Lovers, The Dreamers, Kermit and Me

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Writers: Paul Williams, Kenny Ascher
Publisher: Sony/ATV Music Publishing LLC, Warner/Chappell Music, Inc., Walt Disney Music Company, Universal Music Publishing Group

Yesterday, I couldn’t resist the opportunity to see a special theatrical screening of The Muppet Movie in honor or its 40th anniversary. How fun to visit with my lovable friends on the big screen and remember the fun of that film! Watching the film felt like traveling back to a whole different era- a more innocent time. What seems technically so simplistic compared to some of the CGI effects we see today, for me tells a strong story that truly invokes our imaginations. Disney has retained this in much of its animation, and it’s precisely this whimsy that allows me to get lost in reflection, fantasy and dreaming.

There are so many silly and funny parts of The Muppet Movie, but the part that has touched my heart for all these years is Kermit strumming his banjo and singing The Rainbow Connection. I love the song, and frequently listen to Kenny Loggins’ version. For me, it’s a song of hope that allowed me to see past the bad times and encouraged me to stay a dreamer and keep wishing on stars. It’s the song that validates my firm belief in Disney magic and pixie dust.

I guess that I relate a lot to Kermit in his innocence. I think back to my difficult times, particularly during caregiving and grief, when I felt so vulnerable, and struggled with sadness and anger, but, like my mom, I could at least get lost in child-like delights like a Disney film. I unabashedly admit that I like the idea of fairies and a Fairy Godmother and wishing on stars and rainbows, regardless of whether or not they are tangibly realistic. As the song says, we never know if our wishes will be heard or answered, but it’s a comfort and joy to me to believe and to have that faith. It’s the reason that Ben and I tossed coins into the Wishing Well at Cinderella’s Castle each time we visited Walt Disney World after his ALS diagnosis.

Some people have told me that I am silly in my whimsy and talk of Disney, and they feel compelled to give me what they would deem reality checks, but to talk of rainbow connections and dreams come true is not a matter of being somehow ungrounded. I’ve dealt with the harshness of real life. I still relive some of those experiences and I know that they have changed me. However, they never made me bitter or led me to lose my sense of wonder and ability to smile at rainbows and the dreams that they hold and may fulfill. For me, finding the rainbow connection is like listening to Peter Pan and knowing that “faith, trust and pixie dust” will make things okay. It is the ability to tap my inner child and put the bad things in perspective, balanced with the possibility of dreams come true. It lets me enjoy my memories and wish for more. It lets me know beyond a doubt that Ben is free from the constraints of ALS, eating, walking and playing musical instruments. It allows me to see the messages that I believe are sent by Ben, my parents and my grandma. I may always cry easily and have setbacks of sadness, and I know that all of my days will not be sunny, but you can’t get a rainbow without the rain, and I have made the choice that I always want to be on team Kermit with the lovers and dreamers.

The Rainbow Connection

Why are there so many songs about rainbows
And what’s on the other side
Rainbows are visions
But only illusions
And rainbows have nothing to hide

So we’ve been told
And some choose to believe it
I know they’re wrong, wait and see
Some day we’ll find it
The rainbow connection
The lovers, the dreamers, and me

Who said that every wish
Would be heard and answered
When wished on the morning star
Somebody thought of that
And someone believed it
And look what it’s done so far

What’s so amazing
That keeps us stargazing
And what do we think we might see
Someday we’ll find it
The rainbow connection
The lovers, the dreamers, and me

All of us under its spell, we know that it’s probably magic

Have you been half asleep?
And have you heard voices?
I’ve heard them calling my name
Is this the sweet sound
That called the young sailors?
The voice might be one and the same

I’ve heard it too many times to ignore it
It’s something that I’m supposed to be
Someday we’ll find it
The rainbow connection
The lovers, the dreamers and me

La da da di da da dum da duh da da dum di da ohhh

What Mary Poppins, Bert, Walt and Merlin Knew About Life’s Ups and Downs

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Disney, Mary Poppins, Grief, ALS

“Mary Poppins”
Disney and Cameron Mackintosh Musical Based on the Film

This is a time of year that I simultaneously eagerly anticipate and dread, and I find that am more reflective about my past, my present and my future. As a teacher, who doesn’t love time off from work!? However, this is also the time of year filled with memories of time spent in the hospital with Ben as he succumbed to ALS. Mary Poppins and Bert said, “Open different doors.  You may find a you there that you never knew before. Anything can happen.”  I see that I am the ever-evolving product of all the good and bad experiences, and although it took me a few years to get to this point, I have been following their advice, opening new doors, doing new things, rediscovering myself and considering new paths.

Last weekend, I visited my good friend, Dorie, whom I have known since high school. We had lost touch for a while, but the magic of Facebook brought us back together. For the past few summers, I have gone to visit her upstate and she and her husband have come to NYC to visit me and enjoy some theater. Last weekend, we went to a place called Animal Adventure Park. I love animals, and here you can pet and feed most of them, which is great fun for me.

I have always loved animals. Ben became enamored with them after enough time with me. We shared a love of penguins, and he became very attached to my cat Tiffany (she was not so attached to him!) and to our cat, Disney. It was on a whim last summer that I followed a dream to visit the Georgia Aquarium and participate in special encounter programs with sea otters, penguins and dolphins. During those sessions, I realized how much I truly love being around animals and I feel a tremendous sense of fulfillment when I interact with them. I admit that it broke my heart that Ben could not be at the Aquarium and meet the penguins with me. Still, the animals were a huge source of comfort, joy and inspiration to me.

When I researched the Animal Adventure Park after Dorie mentioned it, I discovered that they have a sloth encounter, in which you learn about, feed and pet them. Sloths are among the animals I have been so eager to meet, and fortunately, Dorie and her husband were also enthusiastic about it. I then discovered that they have a river otter encounter. I am kind of obsessed with otters- river and sea otters. I could not resist the opportunity to shake paws with an otter and thankfully, Dorie was willing to accompany me!

The encounters did not disappoint! They were both wonderful. The animals each have their own personalities and preferences, which is fascinating and delightful. I was in heaven. I knew that Ben would have enjoyed it and I felt good about acknowledging him. This time, I didn’t feel angry or guilty about enjoying it without him, I was proud and happy to keep him with me in my heart and thoughts. I felt the closest to myself that I have felt in such a long time. I was with people I care about doing things that I absolutely love.

Afterwards, I posted photos on Facebook- after all, a large portion of my news feed is dedicated to otters and sloths, and now I’ve actually met them! Several friends commented that I looked so happy and that my smile was huge. I feel grateful to have friends who are always cheering me on and who want to see me thrive. I had to smile and laugh just seeing how positively gleeful I was. Looking at myself in those pictures, I saw that I have once again truly found my smile. I even fantasized about possibilities of working with animals in the future.

Walt Disney said, “We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.” As usual, Walt was right. I am a shy person by nature, yet I am also friendly, reflective and interested in so many things. After I lost Ben, I had to reinvent and reshape a social life. Of course, as I have always said, I am so grateful to have incredible friends and to have friends that go back to my childhood. Still, I had to take a more active role in socializing. When Ben was ill, I got very used to doing things on my own. I am comfortable on my own, which is a good thing in many ways, though it can be lonely and isolating. I have opened doors and done things like taking the opportunity to reconnect with friends like Dorie. Next week, I will head to Chicago to see my college friend Monica and her family, which has become a favorite annual tradition. Although I am a huge klutz and do not generally follow sports, I have become a devoted Cubs fan and love going with Monica to Wrigley Field- another new side of myself! I am also heading back to the Georgia Aquarium. It simply gives me so much joy to be with the animals in that absolutely spectacular place. This time, in addition to the sea otters, I will meet sea lions and even get into the water with beluga whales! Donning a wet suit is something I wouldn’t have imagined doing, but curiosity has taken me there! I have also opened new doors to build new friendships. It hasn’t been easy, but I have indeed met many lovely people and learned new things about myself in the process.

In Disney’s The Sword in the Stone, Merlin explains to young Arthur that, For every to, there is a fro. For every stop there is a go, and that’s what makes the world go round. In life, there are ups and downs. In grief, there has been progress but there have also been setbacks. I have discovered that I am a person who wants and needs to open doors, but I have to do it in my own time. I feel like I have established a more consistent balance of keeping Ben in my heart while delving back into my life. I still do things that I know he would like in order to experience them through his eyes, and for him, but I also allow myself to venture forth on my own terms, being less of an observer and more of an active participant in my life. I know there will be tos and fros and stops and gos, and I am getting better at letting myself feel them all without getting angry at myself or judging myself harshly. I would not have expected that summer would be a time that I would find my smile, but I do believe in pixie dust, so maybe it’s Disney magic that’s clearing my path.

It was a dream come true to hold a little otter’s paw!

 

I found my smile!

 

 

Yesterday- Memories, Grief, And Looking Towards Tomorrow

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On Friday, I saw the film Yesterday. It’s not a Disney film, but I see those, too! It’s a fun film about a glitch in time (the one everyone worried about, which never occurred, at the stroke of the year 2000) in which all memory disappeared of the existence of The Beatles. It’s hard to imagine. I saw the film largely because of Ben’s love of The Beatles. As I frequently do, I wanted to see it through his eyes. When I attend Disney films, I often sharply feel Ben’s absence, and sometimes I do feel his presence, but this time I wanted to be his eyes, enjoying it as he would. It had emotional moments for me, and, even without the obvious title, made me think about “yesterday,” and the concept of time as I’ve journeyed through caregiving, watching Ben battle ALS, coping with the depths of grief and the adjustment to co-existing with it.

If I travel back enough yesterdays, I remember that the first song I ever danced to with Ben was The Beatles’ Twist and Shout. We met at work and at a gala, before we were actually dating, when that song came on, he grabbed my hand and took me to the dance floor. I learned how much of a fan he was of The Beatles and developed more of an appreciation of them. Now, I listen to the albums more often and with more love. During the yesterdays of Ben’s ALS struggle, when we were fortunate to travel to Walt Disney World several times, at Epcot’s England pavilion, I loved watching Ben watch and play the air guitar along with the live bands as they performed music of The Beatles. During the yesterdays of Ben’s time in the hospital, and even on his very last day on this earth, musicians visited him to play Disney music and some of Ben’s favorite Beatles songs, including his favorite, In My Life. On his first day in the hospice unit, Ben had a visit from one of the very kind residents who treated him early on in the hospital, before his tracheostomy and feeding tube. They spoke for quite a while about music and which was their favorite Beatles album. It wasn’t easy for Ben to communicate, but the resident did a great job reading Ben’s lips and I was there to help translate. This resident did not have to visit, but he was a lovely, compassionate soul, and he had to deal with one of Ben’s crises on his very first day as a resident. I know that he will be a wonderful, caring doctor. A lot of yesterdays. A lot of memories. A lot of sadness. But, a lot of love and even laughter in the darker times.

Walt Disney World, 2011.
Ben’ in one of his many Beatles tshirts.

The lyrics of Yesterday start with

Yesterday
All my troubles seemed so far away
Now it looks as though they’re here to stay
Oh, I believe in yesterday

In the film Yesterday, some of the past is erased. It’s a flawed plot, but it did make me think. Imagine if The Beatles had not become The Beatles. Imagine if John Lennon had not been shot. And, more to the point, imagine if Ben had never been diagnosed with ALS. Imagine if there was no ALS? How would life play out? Thoughts like that do at times drift through my mind. It happens often when I see elderly couples walking hand-in-hand, because Ben used to always comment that we would be a couple like that.

2010- Shortly after Ben’s ALS diagnosis and still standing, albeit unsteadily. In his favorite Beatles shirt at a fair with my Pets en Voyage products.

The concept of time is fuzzy when I think back to my days taking care of my dad and Ben. I measure time by significant events in the progressions of their disease and then “firsts” without them and, of course, milestone dates like birthdays and anniversaries. February is a month I dread because it was my dad’s birthday, Ben’s birthday, the month when my dad died and, most recently, the month that my cat Disney died. Summer is the marker of when I lost Ben. The start of each school year reminds me of the insanity I felt when I returned to school a couple of weeks after Ben died, feeling the drastic change of not having the same caregiving responsibilities, which only magnified the feelings of loss and the accompanying grief. They say time heals all wounds. When it comes to grief, I think time helps you adjust to and learn to coexist with the grief. Sometimes my experiences feel like yesterday, sometimes they feel like further in the past.

Indeed, before Ben’s diagnosis, it’s not that life was perfect- it never is- for one thing- my dad had cancer, but an ALS diagnosis sent us into a tailspin. There was always the wish of going back to yesterday.

The narrator says this in reference to Cinderella’s grief over the loss of her mother.
Cinderella © Disney 2015

The narrator (Fairy Godmother) of Disney’s 2015, live action Cinderella said, “Time passed, and pain turned to memory.” This is one of the Disney film quotes that always gives me pause. I can look back at my yesterdays and say that after nearly four years, I still feel the pain of losing Ben. Pain has not turned to memory, but I can view that pain as part of sixteen years of so many memories with him, only the last six of which involve his life with ALS and mine as his caregiver. There has been a gradual shift from continuing to live within the pain of suffering and loss, to embracing the wide range of memories, and the feelings they bring, but also defining and diving into my new “present.” Pain, sadness, joy, anger- a bevy of feelings and emotions related to my yesterdays- are all part of cherished memories and I see that they continue to shape me and lead me towards a bright tomorrow. I even made sure that I visited Abbey Road when I returned to London in 2016- it was a way to honor Ben, have him present with me, and see London, one of my very favorite places but one I never saw with Ben, through his eyes. Yes, I wish I could erase ALS, but this was our unique story. It did not have a Disney happy ending, but it did have love and even some pixie dust. I will carry in my heart all of those yesterdays as I face today and tomorrow.

Feeling like a Beatle, as Ben would have wanted to do.

For My Mom- A Birthday Tribute

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Today, July 8, would be my mom’s birthday. Although, I have written quite a bit about my mom and how close we are, I like to write an annual birthday tribute to her.

When I think about the time, nearly four years ago, being in the hospital with Ben on her birthday, and wondering what was going to happen to him while missing her, I still feel overwhelmed by the fact that I have lost the people I loved the most in the world. I do feel so fortunate to have known and shown so much love in my life. And, I still feel much love. But, my life has changed dramatically in many ways, and sometimes it can feel terribly lonely.

We were always Mickey Mouse fans!

My mom is the person who introduced me to Mickey Mouse and instilled in me an eternally child-like wonder. When we were in London together, I remembered how excited my mom was to go to Paddington Station and the Paddington store in Paddington. The woman in the shop was so taken by my mom’s exuberance over the little bear and being in the shop- it was hard not to get caught up in my mom’s child-like delight- that she excitedly handed my mom a Paddington Bear doll to hold while I took her picture. So, it wasn’t all Disney, but Mommy’s first true love was Mickey.

London 1987. My mom could not wait to visit the Paddington store!

I look at our old photographs and remember the laughter. I am proud to have inherited her ability to celebrate her inner child, her youthful demeanor and her joyful spirit. Sometimes people are surprised that she passed away more than 25 years ago, because I talk about her so frequently and vividly. She is always dear to my heart and so much a part of who I am, but also, of the person I aspire to be.

My mom visited my great-aunt, Tanta Rosie, with our Standard Schnauzer, Dulcie, almost every day.

My mom was my example of the consummate caregiver, perhaps being too selfless. She was so generous and kind, always smiling as she balanced the needs of everyone around her. She tended to my grandmother, who lived with us, and also took care of my great-aunt in the nearby nursing home, and my great-uncle who insisted on living alone but needed much assistance.

I also inherited her klutziness, but, with that, I also have her ability to laugh at herself.

On her birthday, I will continue my tradition of watching The Little Mermaid, because it was one of the last films we watched together. I love to remember how much we laughed when we watched it together, particularly when we looked at my grandma, who just did not understand our amusement. I wish that I had gotten a chance to visit Walt Disney World with my mom, but she has always been present when I have been there. It always touched my heart that Ben was so aware and acknowledging of her when we were there.

I proudly say like mother, like daughter!

Happy Birthday, Mommy! I love and miss you every single day.

 

July 6- Not Your Typical International Kissing Day

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ALS,Walt Disney World

A PhotoPass photographer caught this moment in front of the Castle at Walt Disney World. It was actually the first time we returned after Ben’s ALS diagnosis in 2010

Today, July 6, marks the fourth anniversary of the day that Ben had a respiratory crisis and we ended up in the Emergency Room at Mount Sinai Medical Center.  For me, this is simply the date when everything changed. I have learned not to have expectations about how I will feel on these milestone dates, but it has remained a particularly difficult day. I woke up this morning, as I have each year, thinking about how I woke up on this date four years ago and Ben said he could not breathe. I think of how we waited for the ambulance, not knowing what would happen. How ironic it is that today is International Kissing Day, because on that day he was connected to a ventilator and his mouth was covered with a  Bipap mask. For the next few weeks, before he agreed to a tracheostomy, our way of kissing was to blink our eyes tight and then I would throw him a kiss- he couldn’t use his arms or hands to throw one back.

I remember that in the midst of the frenzy of an Emergency Room, it did not occur to me that I could lose Ben at that time. I was kept very busy as the health care proxy and the only family member present. I emailed and texted his family and our friends and answered a lot of questions. I tried to stifle resentments towards his family, a few of whom had lots of questions, absurd suggestions and judgments but had never been there for him as his ALS was progressing. I was surrounded by people but felt very alone. I talked to Ben but had difficulty reading his lips through the mask. And, he slept a lot, leaving me to my own thoughts about what would happen next. I shared all of this in a previous year’s post.

I did not make any plans for today, not knowing how I would feel, but allowing myself to be okay with anything I chose to do. I have not shared anything with anyone today, keeping my feelings and memories to myself. I don’t want to hear that I should keep living, or I should make plans to distract myself, or that Ben would want me to be happy. Sure, it’s all true, but it doesn’t matter. Today, I just want to think about Ben, and that day.  It’s an odd feeling that nobody else would even remember this date, and I wouldn’t expect them to. That does, however, underscore that when this crisis hit, it was just Ben and me. And, as awful as it was, I was there for Ben, he knew he could rely on me, and there was a lot of love and trust. We may not have been a real Disney prince and princess, but the profound love and caring that we expressed throughout his experience with ALS gave special meaning to the song title So This is Love, from Disney’s original, animated Cinderella. I have been listening to a lot of our favorite Disney love song albums and remembering how he loved to listen to them. Music was so important to Ben, so it feels right to do this. One Dance remains a song that brings tears to my eyes, and yet, I still like to listen to it because it captures so perfectly how I was feeling during those days in the hospital. Click here to read about it.

Summer has never been my favorite season because I dislike warm weather, and now summer is filled with the memories of Ben’s last summer. It’s an odd contrast to my being a teacher and eagerly awaiting summer break. I have, however, come to cherish my frequent summer walks in Central Park. I do look for signs that Ben is with me, and finding turtles there is an important sign that he is present and watching over me. I always bring some coins to toss into the fountain and make wishes (see my post on wishes), often shedding a few tears. I try my Disney best to be optimistic even when I’m sad.

This date may always be a difficult day. In my mind, it will always be thought of as the beginning of the end. I see all kinds of social media posts about International Kissing Day and I think that it was the first day when I couldn’t kiss Ben.

I find myself wondering if I will always struggle on this day, though I do notice that the intense and debilitating grief has shifted. I have learned that today’s fog will lift, and that I will also have many days where I remember days in the hospital that, despite the devastation and horrible decisions, were filled with kisses and with love, music and even laughter. Today is just not one of those days.

Walt Disney World, 2002
The pre-ALS days.

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