Moving Forward With Faith, Trust and Pixie Dust

Ben playing the drums at Walt Disney World’s Animal Kingdom. He loved listening to and making music.


Sometimes, it feels like pixie dust is sprinkling down to let me know that Ben is watching over me to give me hope and inspiration for engaging in life. Maybe you don’t believe in that, but my belief in the magic lets me see and feel it and know in my heart that, at least for me, it’s true. In my last post about Snow White and the Seven Dwarfs, I said that I am my own Doc (click here for that post). Last night, as I assessed my emotional growth, I had yet another reassuring reminder that Ben stays with me as I immerse myself in life.

Last night, I went to see my third Paul Winter Winter Solstice Celebration at the Cathedral of St. John the Divine in Manhattan. It has become a tradition since Ben passed away. To give a little background: I knew of Paul Winter from many years ago, when my uncle took me to hear a concert. Ben was intrigued, and he liked the Paul Winter CDs I played. Ben loved music and he was a talented, self-taught musician and music orchestrator. He especially loved the soprano saxophone, which is Paul Winter’s instrument. We just never seemed to make it to the annual Winter Solstice concert. After he was diagnosed with ALS, it was too difficult to get there. I would never have gone without him.

After Ben died, it took a lot of adjusting, with a lot of emotional stress, to get used to doing things that I could not do while Ben was ill. I still struggle with some guilt- that Ben is not here to enjoy things, that I should not enjoy life if he cannot- but I have been steadily pushing through that to find the balance of continuing to live while I keep him with me in my heart. Last night, I realized that this concert is a kind of pixie dust for me- I look forward to it because it reminds me that Ben is with me and that, although it’s not the same without him, the concert envelopes me in thoughts of Ben and what he loved, and it brings me a unique comfort and assures me that it is okay to keep going and shape a new and vibrant life.

The winter solstice celebration is more than a concert- it includes the participation of the Forces of Nature Dance Theater, vocals by Theresa Thomason and, of course, the brilliant consort musicians. The Cathedral of St. John the Divine is a magnificent building, and one of the five largest churches in the world. The acoustics and the magnificence of the building enhance the whole experience. The production elements were visually stunning, and my friend and I were mesmerized. I listen to music differently and more intently because of Ben’s love and understanding of it and that’s one reason the concert is a profound experience for me.


The Cathedral of St. John the Divine, NYC- Paul Winter ‘s Winter Solstice Celebration

As I sat at the concert last night, I thought about the first concert I attended, back in 2016. At that time, I did not know that there would be a special guest, Gary Brooker, of Procol Harum and A Whiter Shade of Pale fame. He also has connections to the Beatles and to Sir George Martin, producer of most of the Beatles’ recordings, as does Paul Winter. Ben was a huge Beatles fan. Gary Brooker talked about when John Lennon was shot, and as a tribute, he sang In My Life. This was very emotional for me because it was Ben’s favorite Beatles song, and a song that was even played for him on the day he left this earth. It was unexpected and shook me to tears, anguished that Ben should have been at the concert to hear it in this setting.  At the same time, there was also a deep feeling of the universe at work. It seemed meant to be that after all of the Paul Winter concerts that I missed, that I could finally make it to this particular concert on this particular evening, thinking so much of Ben because of the music, to hear this song and see Gary Brooker, whom Ben would have been so happy to see and hear performing this song with Paul Winter on the soprano sax. Somehow, I just knew that Ben was with me and was part of it. For the first time, this kind experience did not devastate me and overwhelm me with guilt and a huge setback in grief. Instead, it comforted me because it conjured Ben and what he loved. The fact that there was a Beatles connection and Ben’s favorite song was performed was an unexpected but such a special, almost spiritual surprise.


Lyrics of “In My Life” on the card I designed to send to people for their expressions of sympathy.

Maybe it was not mystical, and simply a fortunate, lovely coincidence. Of course, that’s possible. But, feeling that the universe was working for Ben and me gave me tremendous comfort and even joy, and symbolized a growth in my own spirit and a shift in my grief.

I realized last night that I have come to look forward to this traditional event because I find symbols of love and hope and feel great connectedness with Ben and life. It has not been a quick and easy process. It is ongoing and unpredictable.  But, moments like last night are positive and empowering, and, also filled with messages of love and encouragement. That feels like pixie dust to me.

“All you need is faith, trust and pixie dust!”

I believe that Peter Pan was right when he said, “All you need is faith, trust and pixie dust!”

Magic Kingdom, 2006- pre-ALS days

Snow White and the Seven Dwarfs – Kindred Spirits in Caregiving, Grief and Beyond

Original ad for the movie premiere.

On this day, December 21, 1937, Walt Disney’s first full-length feature, Snow White and the Seven Dwarfs premiered at the Carthay Circle Theatre in Los Angeles. I wish I could say that I navigated caregiving and grief like Snow White, the graceful princess who happily sang her way through taking care of the seven dwarfs to a happy ending. I do believe that at times I was that person to Ben and my dad. I was very much their cheerleader and the person who tried to keep them entertained. I was also the nurturing person who managed the details of their care, the way that Snow White kept her household together, except that I seriously lack her stellar housekeeping skills! Alas, I have always related more to the dwarfs!

One of my first blog posts addressed how, as a caregiver, I often felt like all seven of the dwarfs within a single day. In the earlier stages of grief, I also had drastic ups and downs and could feel like any and all of the dwarfs within moments. Now, more than three years after losing Ben to ALS and almost five years after losing my dad, I still feel a kinship with those seven cuties. Here’s how.


ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Walt Disney World Halloween Electrical Parade

During my caregiving days, as Ben’s ALS progressed, he often required assistance throughout the night. I am a NYC public school teacher, and there were days that I could barely keep my eyes open at work, and a classroom is a place where you need to be on your toes. My dad also called many times in the middle of the night if he didn’t feel well, and I would travel about 45 minutes either to his home or to meet him at the Emergency Room late at night or early in the morning.

In the early phases of grief, there were many sleepless nights for so many reasons- recalling good and bad memories, anxiously contemplating the future and feeling the loneliness and the loss.

Now, I continue to have sleepless nights, though less consistently. I worry about being alone for the rest of my life, feel anxiety about dating, and sometimes I simply get caught up in memories and my mind gets the best of me. It’s also exhausting to deal with the ups and downs of emotions while adjusting to a new lifestyle, trying not to revert to staying by myself and becoming too comfortable alone.


ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Not sure who the real Dopey is!

When juggling Ben’s needs, I did not necessarily know what to do or how to help him, and, indeed, I did feel Dopey. The medical jargon was also confusing to me at times. Simple things just seemed out of reach for me because I became so overwhelmed or was just so tired. I broke things, dropped things, locked myself out of the apartment, and a bevy of other Dopey things.

For the first couple of years after I lost Ben to ALS, I found it very difficult to be caught between the past and the present. Sometimes I found myself buying something because Ben would have wanted it. When I got home, I was only reminded that he was no longer here, and then I felt Dopey, and more sad.

There are still times when, in the middle of nowhere, something will trigger great sadness and I will break into tears. People are generally understanding, but I still feel kind of Dopey.

Trying to step back into a social life, reaching out to old friends and new people has me feeling awkward and yes, a little Dopey. I feel most Dopey since I have delved into online dating. I feel like I never do the right thing, take things personally from people who don’t even really know me, and like there are codes and strategies that I am too Dopey to understand!


ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

I love Bashful!

When I was a caregiver, asking for help and not even knowing exactly what to ask for was  embarrassing. Having to explain to professionals, or even friends, some things I would have preferred not to discuss, or even know about, was definitely cause for me to feel Bashful!

Throughout the early days of grief and even now, it’s been embarrassing to have a setback or to feel overwhelmed with sadness or tears, especially when I have felt that people are judging how I’m grieving, how long I’m grieving, and what I am doing to continue living and reshape my life.

As I’ve stepped back into life, I have had to overcome my general shyness to create a new social life. I have reached out to old friends and made some new ones. I have also joined some online dating sites in an effort to find love again. It’s very difficult for me. And, it’s been very disheartening, amplifying the feeling that Ben is the only person who would ever really “get” me. But, despite embarrassment and vulnerability, I press on.

I also feel Bashful about things that are not going as well as I would like them to go, like online dating. I don’t feel like my life is where I want it to be, though I am proud of myself for taking many steps forward, but I am self-conscious and sometimes want to withdraw and stay by myself.


Staying cheerful, positive and focused when my dad and Ben were Grumpy was difficult. They were understandably Grumpy, but their taking it out on me sometimes only made for more Grumpiness! When I had been through all of the scenarios that I just described, sometimes in a single day, it was pretty easy to be Grumpy!

ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Ben (pre-ALS) and Grumpy, Walt Disney World, 2001

Now, it’s usually the setbacks that have me feeling Grumpy. The events dim my mood, like when I went to the Georgia Aquarium and my immediate reaction as I walked through that magnificent facility was anger that Ben did not live to join me and have that experience. Sadness and devastation were familiar to me, but the anger was new and it left me feeling Grumpy. I am also Grumpy when I receive unsolicited advice and judgments about how I should handle my life and how I should feel.

To anyone who has seen that side of me, during caregiving and as I’ve traveled through and emerged from the other side of grief, I do apologize!


ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Walt Disney World Parade, July 2014

Even in the worst and “grumpiest” days of caregiving, when Ben and my dad were struggling and patience ran thin, there was still happiness, albeit bittersweet at times. Sharing good times, making each other laugh, seeing Ben or my dad enjoy something, and successfully meeting their needs, were all positive and joyful experiences that definitely made me Happy!

In the early days of grief, you could call me Happy in those moments when I was lost in good memories or I woke up without dreading the day and the thing that would trigger my sadness.

Now, you can color me Happy when I realize that I am not just going through motions, and I actually am enjoying the present without feeling guilt. I realized this holiday season that I have once again found my genuine smile. I enjoy myself and immerse myself in life and activities I love. In the back of my mind is always the feeling that I wish Ben was with me, but I am usually more comfortable with that. I still have my setbacks, but I can be happy again and it feels good.


ALS,Grief,Disney,Snow White,Caregiving, 7 Dwarfs

Well, this might not apply to everyone, but I’ve got allergies, even to my cat, whose name, by the way, is Disney! I love her and would not trade her for anything, so I deal with the allergies! Some of my allergies actually subsided after I lost Ben and my dad, leading my doctors and me to think that stress exacerbated my problems.


On this day, December 21, 1937, Walt Disney’s first full-length feature, “Snow White and the Seven Dwarfs” premiered at the Carthay Circle Theatre in Los Angeles. I wish I could say that I have navigated caregiving and grief like Snow White, the graceful princess who happily sang her way through taking care of the seven dwarfs to a happy ending. I do believe that at times I was that person to Ben and my dad. I was very much the cheerleader and the person who tried to keep them entertained. I was also the nurturing person who managed the details of their care, the way that Snow White kept her household together, except that I lack her stellar housekeeping skills! Alas, I relate more to the dwarfs! I’ve written about how, as a caregiver, I often felt like all seven dwarfs in the course of a single day (click here for that post). To mark this anniversary of the film’s premiere, it seems fitting to me to reflect on how, in grief as in caregiving, I can feel like all seven dwarfs- at times, within the course of a single day. Happy- In the early days of grief, you could call me Happy in those moments when I was lost in good memories or I woke up without dreading the day and the thing that would trigger my sadness. Now, you can color me Happy when I realize that I am not just going through motions, and I actually am enjoying a moment in the present without feeling guilt. Doc- Call me Doc as I diagnose my grief. Am I doing ok? Will people think I’m doing ok? Do I care if people think I’m doing ok? Should I care? Where should I be right now in this process? Am I “normal”? Bashful- Sometimes it’s embarrassing to have a setback or to feel overwhelmed with sadness or tears, especially when I feel that people are judging how I’m grieving, how long I’m grieving, and what I am doing to continue living and reshape my life. It can be difficult to ask for help, and I’m growing too Bashful to ask people who have been listening to me to continue to do so. I’ve repeated the same things so many times, and I do wonder sometimes what people must think. Sleepy- There are many sleepless nights for so many reasons- recalling good and bad memories, anxiously contemplating the future and feeling the loneliness and the loss. Dopey- Being caught between the past and the present can be baffling. Sometimes I find myself buying something because Ben would have wanted it. When I get home, I am only reminded that he is no longer here, and then I do feel Dopey, and more sad. There are also times when, in the middle of nowhere, something will trigger great sadness and I will break into tears. People are generally understanding, but I still feel kind of Dopey, and Bashful, for that matter! Grumpy- The conflicting emotions of grief definitely make me Grumpy at times. Sorry! Sneezy- Still allergic to Disney, the cat! I still would not trade her for anything. She has been the greatest comfort to me. How about you? Are you more Snow White or one or more of the dwarfs?

As you can tell, Ben preferred to take my pics with the dwarfs!

As their caregiver, although Ben and my dad did have medical care, when either of them didn’t feel well, sometimes it was up to me to figure out what might help. Sometimes, what we thought could be symptoms of a big problem would just go away. Sometimes I had to seek more advice or help. This is as close to a Doc as I will ever be!

Call me Doc as I have diagnosed my experience with grief. Am I doing ok? Will people think I’m doing ok? Do I care if people think I’m doing ok? Should I care? Where should I be right now in this process? Am I “normal”?

Even now, as I feel that I have stepped back into life, and I’ve even felt that I found my smile and childlike enthusiasm for the holiday season again, I assess my progress in coping with grief and my emergence from the very dark days. I read posts from the days when I just started the blog in 2016 and analyze what has and has not changed, what triggers setbacks and what’s healthy or potentially troubling.

I am happy to say that I feel that, overall, I’m doing well. This Doc rests assured that healing happens.

How about you? Are you more Snow White or one or more of the dwarfs? Please share in the comments section below. If you don’t see the comment box, just click on the title of this post.


Walt Disney’s Legacy- More than Animation (12.5.1901-12.15.1966)

Walt Disney, Walt Disney World

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

My blog was inspired by the way that I was affected by Disney films, characters and lyrics in light of caregiving and loss. The same can be said about many of the quotes I’ve read by Walt. It seems to me that this is a good day to reflect on some of his words of wisdom that have consoled, guided, intrigued, and entertained me.  They help me to look to the future with optimism, and I think that’s especially significant as we approach a new year. Also, they make me think about the concept of a legacy. My parents left me with a legacy of kindness, loyalty and compassion and always having a sense of humor and whimsy. I hope that I will always honor them and leave a similar legacy.

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

ALS,Caregiving,Grief,Walt Disney World, Disney

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

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

The Dapper Dans were very cool! Ben always loved them.

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

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

Ben even had fun on the Magic Express wheelchair lift!

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


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

At the Walt Disney World Wishing Well at Cinderella’s Castle- Making a wish!

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

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

ALS,Caregiving,Grief,Walt Disney World, Disney

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

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

This quote is my inspiration for the future. It’s allowed me to reach out to people, to travel to new places and make dreams come true- in the past year I’ve gone to see the cherry blossoms in Washington, DC and I’ve greeted otters, penguins and dolphins- all things I have wanted to do. Throughout these experiences, I did miss Ben. I also struggle with feeling lost and lonely. At the same time, I believe that my curiosity, desire to learn, love and compassion will keep carrying me forward to find new and more love, laughter, peace and joy. I feel cautiously optimistic about the exploration.

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

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

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

ALS,Caregiving,Grief,Walt Disney World, Disney

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

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

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That sounds like a good plan! Thank you, Walt


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.


Gratitude is a Superpower on Thanksgiving and Always!

2011- The first time we went to Fantasmic!

I have to admit that even thinking about Thanksgiving gives me anxiety. But here it is. Thanksgiving is a very difficult holiday for me because it reinforces that I’ve lost the family to which I was so close. I have flashbacks of my last Thanksgiving with my dad, spent in the hospital, where I schlepped a full turkey dinner that he ate, mostly, to make me feel better because I’d been crying and pleading with him to eat and get stronger. My last Thanksgiving with Ben was melancholy because he was understandably down about so many things regarding his ALS, including not wanting to eat pureed versions of traditional holiday dishes. And yet, although it was easy to lose sight of it at the time, we did have things for which to be thankful. Being able to feel gratitude was indeed a super power, because it gave us perspective that allowed us to always see the love that was there. At these more challenging times, reminding myself of the many things for which I’m grateful continues to warm my heart, even if those memories come with tears.

Of course, I always take comfort in Disney, so try to heed the advice of Walt Disney who said, “The more you are in a state of gratitude, the more you will attract things to be grateful for.” I have really tried to embrace that attitude and, for the most part, it helps me. I can’t shake the hovering sadness that I don’t have my family. Much of the family that I do have is religious and judgmental, and I don’t feel comfortable with them. Ben’s daughters are not in touch with me, so that is another lost connection.

However, I am grateful to have amazing friends, and I will celebrate with them today. I am so fortunate to be included in the families of my friends and my friends are my family. And, I am grateful to Walt Disney and all he created for providing me with entertainment, inspiration, motivation, joy and opportunities to reflect and sort through my feelings.

Every year, I talk to my students about the importance of gratitude, whether or not you celebrate Thanksgiving. When things are not going well, it helps to think of even the tiniest thing for which to be grateful- be it a favorite song or snack. I do validate the need to have a pity party from time to time, but said that once you begin to think of those little things for which you’re thankful, you may very well find that there are many of them. I could see that what I was saying resonated with many of them, and I could see them perk up when I said that I have done that myself when Ben and my dad were ill. Some of them have sad lives, especially at such young ages, so I like to see them respond to the idea of feeling grateful to receive a text that makes them smile, or that someone in class made them laugh, intentionally or not! It was nice to watch their faces light up as they raised their hands to share things they are grateful for- in Spanish, too! (well, I am a Spanish teacher!) Family is a sore spot for some of them, so they are happy that our vocabulary list includes music, candy, videogames, cell phones and other assorted things that they love.

Indeed, feeling and expressing gratitude has been a super power that’s helped me throughout caregiving and grief and emotions that have turned me Inside Out. What more appropriate time to summon gratitude than Thanksgiving?!

  •  At the top of my list is gratitude to have been the caregiver for two supremely important people in my life. Caregiving surely was not easy, but it was the most important, valuable, loving and rewarding thing I have ever done. I could not save them, but they knew that I was completely devoted to them, and that I would love them, care for them and provide a sense of security to them until they left this world. I treasure the knowledge that they loved me.
  • I am grateful for my cat, Disney. She has been there for me in good and bad times. When Ben was in the hospital, and I knew that he would never come home again, it was a priceless comfort to return home to her. Disney always loves to be hugged and I know that she was attuned to my sadness. I am now her caregiver, as she has many medical issues, but she has brought so much to my life and it is my privilege to take care of her. I’m grateful for my love of animals, as they are often more intuitive, honest and more humane than humans. And, they completely delight me!

Brave Disney during her hospital stay.

  • I have said it before, but can never say enough, that I am grateful for my friends, who have shown me such kindness, generosity, compassion and encouragement, while I was caregiving and then, in grief. Their spirit extended to Ben as well. When family didn’t step in or made empty promises to him-and there were indeed disappointments and dramas-Ben and I could always count on friends. I consider it a precious gift to have these wonderful people in my life and to know that I am loved and that Ben remains in their hearts.
  • I am grateful to find comfort in the arts and in my creative endeavors.  Blogging has been tremendously helpful, and I am grateful to know that readers find comfort in my words.
  • I’m grateful to have settled into my life, enjoying many of the things I always loved, like going to the theater and spending time with friends, particularly friends I have not been able to see in quite some time. Yes, there is still loneliness and aloneness, but I never lose sight of how fortunate I am to be surrounded by wonderful people, a lot of love, and to carry with me in my heart very beautiful memories.
  • I’m certainly not grateful to have had a romance cut short by ALS and to have to try to date and look for love again. The online experience is not really working for me, but I’m grateful to have met some nice people who give me hope that someone may very well be out there for me! And, it’s nice to feel the excitement of a little crush or at least the possibility of romance from time to time!
  • I am grateful to be teaching in a wonderful public high school. Not only is it a healthier environment than my prior school, but it allowed me to start fresh, away from my old school and the memories it held of the crises, illnesses and, ultimately, the losses of my dad and Ben. Those memories certainly follow me, but it’s good to see that I can move beyond being seen only as Abby, the person everyone marveled at and felt bad for because I spun in circles juggling caregiving and teaching; Abby the caregiver and the Daddy’s girl who lost her dad and then her husband, even though those experiences are an integral part of me. My school plays music instead of ringing bells to signal the beginning and end of a class period, and my kids always love when I smile at the playing of “Twist and Shout,” sharing that it is the first song that Ben and I danced to- well, they’re teenagers- they love romantic stories! My stories sometimes help them share their stories, and we build a strong sense of community and compassion.
  • As I’ve said, I lost myself in caregiving but I also found myself. I discovered that I am a caregiver to my core, and last summer I earned my certificate as a caregiving consultant. I am grateful to have met some terrific people who, tragically, are experiencing ALS as patients or caregivers. Sharing our experiences is emotional and powerful. I’m grateful to believe that wishes can come true and that there will one day be a cure for ALS and all devastating and terminal diseases.
  • I’m grateful for my sense of whimsy and belief that if you wish and dream enough, your wish will come true. It lets me know that I will have even more to be grateful for next year!

Wishing well at Walt Disney World
July 2014

At this time of year in particular, I think about Pollyana, her wonderful world view and the “Glad Game” in the 1960 Walt Disney Productions film of the same name, and based on the novel by Eleanor Porter. (click to read my original post about that). This was a game that Pollyana’s father taught her to deal with disappointment, in which you turn every bad situation around and think about something you’re glad about regarding that situation. As time has passed, I’ve learned that being “in a state of gratitude” is not to naively play the Glad Game. It is not to ignore the bad experiences or diminish their impact, but, instead, to draw upon the very important power of perspective. I have a good cry when I need to, or when something triggers it, but I can also shift my focus to aspects of these experiences that compel gratitude. That said, I don’t like when people tell me that things happen for a reason with regard to my Dad and Ben and their experiences- there is no reason for those kinds of illnesses. The lessons could have been learned without that kind of suffering and loss.

Film clip: Pollyana, 1960, Copyright © Walt Disney Productions  For those of you who remember the TV series Bewitched, the woman in this clip, Agnes Moorehead, was Endora!

There are and there will be setbacks and I am consumed with feelings of wanting to be respectful to Ben’s memory and to make my dad proud. My memories will accompany and guide me on my journey and will always be a part of me, and that gives me great comfort and peace. And, I keep reminding myself of what Christopher Robin said to Pooh: “You are braver than you believe, stronger than you seem and smarter than you think.” I know I’ll be okay because I have the super power of gratitude that gives me a positive perspective.

Thank you for indulging this reflection and for sharing in my experiences in caregiving and grief. Try the “Glad Game.” And watch Pollyana. Please get back to me and post your comments in the space below.

Happy Thanksgiving.

With all good wishes,