“Peter Pan and Wendy” – The Power Of Happy Thoughts and Friendship in Caregiving, Grief and Life

ALS,Caregiving,Grief,Walt Disney World
Ben and I with Peter Pan and Wendy Walt Disney World in 2006 Before ALS

I am pleased to say that I found Peter Pan and Wendy, now on Disney+, to be an excellent and thought-provoking live action adaptation of Disney’s beloved animated story. This film tells the story of how the relationship evolved (or disintegrated) between Peter Pan and Captain Hook. I found myself thinking of my caregiving days, relationships, responsibilities and how they have affected my perspectives and who I am today. This film helped me to reflect on what brings us to where we are in our lives. Please note that there are spoilers in this post.

We learn that Peter Pan and Captain Hook- whose name actually is James- were once best childhood friends. However, Peter banished James from Neverland because James said that he missed his mother, a sentiment that was forbidden by Peter. When Hook eventually returns, they are enemies. Peter says that he survived on his own not with faith, trust, and pixie dust, but rather, with the help of his friends. We know this is not true, because these were exactly the ingredients he used to teach Wendy, John and Michael to fly. The lie did achieve Peter’s goal of hurting James, who became embittered and evil because of the anger he harbored against Peter for abandoning him. Hook expresses that the hard part of getting old is seeing that, “Your friend can look you in the eyes and not recognize you.” This quote resonated with me. Caregiving changed me. I know that. It affected some of my relationships. Importantly, I think about the way my relationships with my dad and Ben shifted to one of caree and caregiver. It was hard to reconcile that I was becoming the parent to my dad and it was hard to feel the shift of Ben’s and my relationship. There were times that we lost who we were to each other. There were times that we lost our own identities and did not recognize ourselves. Some friends got to know me better, others drifted away. Friends who were truly there for me saw and understood me at times that I had a difficult time recognizing myself. I did recognize and acknowledge my friends and the love and support they offered. Other people disappointed me with their distance, disinterest or even dismissal. Though I had enough happy thoughts and memories to keep from becoming bitter, I sometimes still fret that some of these relationships became so superficial. I felt that these people did not even try to see me and I also struggled with the fact that I barely recognized these people as the friends they once were.

As in the original story, Peter Pan teaches Wendy, John and Michael to fly by directing them to fill their heads with happy thoughts. Tinker Bell is there to add the pixie dust. Wendy’s mind floods with lovely memories that quickly take her into the air. Memories have been a focal point of my own life, particularly as I have coped with grief. Although the sad memories of illness and loss continue to occupy space I my head, I have found that more and more, my mind seems to gravitate to the more joyful memories. I like to surround myself with photos and other memorabilia that make me smile. I let myself have setbacks but don’t dwell on resentments and negative memories. At times, I write about them to try to sort them out and give them their say. I want to be clear that I have not rewritten my past in a way that has omitted the difficult times and people, especially when I want to honestly address the challenging aspects of caregiving and grief. Still, I tend to conjure the better times. While I never literally left the ground, that perspective has served to lift my spirits and let me rise from depths of grief.

The Peter Pan Statue in Kensington Palace Gardens always brings a feeling of whimsy and magic. During my first visit back to London after losing my dad and Ben, it also brought a sense of hope.

Unfortunately, Hook feels that he has no joy or good memories to propel him in a better direction, now defined only by his hook. On the contrary, Wendy is bolstered by positive, loving childhood memories and she provides the mothering that soothes the Lost Boys. Unlike Hook, Wendy can save herself with her happy thoughts. This is also something that I can relate to. I have said that caregiving was my most difficult, frustrating and devastating experience but also the most loving, meaningful and rewarding experience. The positive and loving memories have carried me forward.

In the original and in this film, Peter Pan says that “To die would be an awfully big adventure.” I find this statement particularly unsettling, particularly in light of caregiving for my dad and Ben. I can attest that neither Daddy nor Ben ever referred to their fates in that manner.  But, Peter is a boy who is not allowing himself to grow up and mature. Wendy, on the other hand, declares that to live would be an awfully big adventure and that “to grow up might be the biggest adventure of all.” There is great appeal in a Neverland kind of existence, free of responsibility and rules. I am someone whose inner child shines brightly. However, I have also pointed out that my whimsical nature does not mean that I am not grounded in reality. Experience has taught me that there is tremendous satisfaction in taking intimidating leaps ahead to cultivate positive actions and loving, deep relationships, even if the growing pains include uncomfortable changes.

Tinker Bell has always been a favorite character of mine, so much so that I named my cat Tinker Bell because she was small and, in my Disney mind, fairy-sized. In this film, Tinker Bell still possesses her feisty, clever, and adorable manner. Though she does not speak, Tinker Bell is expressive, and Wendy takes the time to understand, communicate with and value her. When they part, Tinker Bell does utter a most profound and valuable expression of gratitude to Wendy, saying, “Thank you for hearing me.” To me, that was the heart of the film. Being truly heard and seen for who we are at our core is something that we all want. Feeling validated is something that we need. I saw that in my dad as he grappled with being older, weaker, and more vulnerable. I saw it in Ben as ALS took away his ability to physically care and speak for himself. They wanted to be heard and seen, to know that they mattered. During caregiving and then as I have moved through grief, I, too, wanted to be heard as I worked through how and when to delve into the world of the living and reshape my life. I also recognize this in the caregivers and grievers I support. It is something that we must all practice because it does not always come easily when we see things through our own lenses.

Tinker Bell has a little Tinker Bell costume and doll.

I am still discovering what happens when I head “to the second star to the right and then straight on till morning.” I witnessed and felt the power of thinking positive thoughts, intensively listening and hearing, and being recognized for who we are. I am grateful for those who heard and saw me and who continue to support me. The experiences- as well as my firm belief in faith, trust and pixie dust- brought me to this point in my life and compelled me to want to give back and work in support of caregivers and those in grief.

I encourage anyone reading this to document your own experiences of feeling heard and seen, and of doing the same for others. These will become your happy thoughts. Feel free to share in the comments.

Looking Back and Ahead to a New Year Through a Disney Lens

In Mary Poppins Returns, Mary Poppins said, “When you change the view from where you stood the things you view will change for good.” I believe that the past year helped me to shift my view in positive ways. I put into practice Mary Poppins’ good counsel that, “When the world turns upside down, the best thing to do is turn right along with it.” She, along with other Disney friends, helped me to find perspective, insight and positivity that I want to take with me into 2023.

As I think back to the approach of 2022, Remy from Ratatouille stands out for his very true statement that, “The only thing predictable about life is its unpredictability.” I would not have thought that last year at this time, I would spend New Year’s Eve knowing that I had upcoming surgery for breast cancer, to be followed by radiation. It was not something that I shared with many people, and I am still proud of myself for this decision and for honoring my respect for my own privacy. This year, I am relieved and thrilled that my experience with cancer is only a memory. I am so fortunate. Though I would have preferred not to have had to deal with illness, I learned that I can turn upside down with my world, and I could choose to view the experience as in a positive way, in that it helped me to find, or acknowledge, my inner strength.

Throughout my cancer treatment, I conjured a bit of Megara from Hercules. “I’m a damsel, I’m in distress, I can handle this. Have a nice day.” I never thought of myself in this way, generally perceiving myself as pretty weak, despite the bravery I was repeatedly told that I displayed during my days as a caregiver for Ben and Daddy. Also, I am not a good patient, to put it mildly, and I am terrified of even the anticipation of discomfort. Thankfully, I healed well, I attended daily radiation treatments for a month, during which time I soothed my heart and soul with daily visits to Central Park, where I fed my little buddy squirrels, was counseled and protected by cardinals, developed a good understanding with some blue jays, and watched the seasons change. On some days, I even treated myself to a Broadway matinee. Yes, Christopher Robin, I was braver than I believed and stronger than I seemed. Maybe I was smarter than I thought because I found ways to calm and energize myself, surrounded myself with a small group of people who were my champions, and gathered and worked so well with an incredible medical team. Medical leave was stressful, particularly financially, but I tried very hard to shift my view and to recognize and embrace that it was also a rare opportunity for self-care and reflection.

One of my favorite pictures.

The truth was that I did not miss being at school. I missed some of the students and I missed my club. But, I did not miss the job or the environment. It took a while to realize that this was not a bad realization.  Instead of dwelling on not wanting to teach and wanting to retire (I can’t deny that I do spend a lot of time fantasizing about this!), I was presented with a chance to think about the things that really matter to me, things that I want to do, where I have come from, where I was, and where I would dare to go. I had trouble focusing because I was caught up in my medical treatment and healing, but I realize now that I was, in many ways, setting myself up to follow different paths. Walt Disney said, “All our dreams can come true, if we have the courage to pursue them.” The upside of my health problem was getting this time to think through my dreams and how to summon the courage to pursue them. I want 2023 to be a year where I find more courage and confidence.

I have continued working on my caregiving memoir/workbook, which is now on its fourth draft and looking good. I have also taken several classes on writing for children, which is something I have wanted to do for longer than I can remember. I am playing with a few ideas and have dedicated time on a weekly basis to work on my writing. Even when I am not writing, my head is spinning with ideas, and this feeds my soul and inspires me. Whether or not my work ever gets published, I am thriving as I push myself and my creativity to grow. Although timid, I think of Quasimodo and know that each time I put pen to paper, or keystroke to keypad, “Today is a good day to try.” I aim to make 2023 a year of good days to try!

Working on behalf of caregiving kids has also been at the forefront of my goals. This year, for the first time, my club held a couple of school-wide activities to honor November’s National Caregiving Month. We invited everyone to contribute words of support and encouragement on a huge banner for our students and staff who are caregivers. The positive response and feeling of pride among caregivers AND those who were writing the kind words was truly heartwarming. We also held journaling workshops that were so popular that we will continue them throughout the school year. As I have put myself forward and concentrated on my desire to work with children, I found an opportunity with Hope Loves Company to be a leader of an online support group for children who have or had a parent or family member with ALS. I have volunteered with Hope Loves Company in the past, and I am delighted about this new role. I am also strategizing ways to expand on my ideas in a way that extends beyond my teaching days. I get nervous about the possibilities and tend to put obstacles in my own way. I know that a lot of this is confidence, and some of it is my nature as a worrier. Still, I have seen that shifting my view and putting myself out there and reaching towards the future with my goals in mind has had positive results. I must continue to summon Merlin from The Sword and the Stone, who said, “It’s up to you how far you’ll go. If you don’t try, you’ll never know.” It is my wish and my intention to keep trying and keep moving farther in 2023.

I love Edna Mode, but I think that I will always disagree with her comment that, “I never look back, darling. It distracts from the now.” Looking back to my caregiving days helps me to offer compassionate care to my students who are caregivers and has driven me to incorporate this into my teaching and my future plans. Even as I look ahead, I remain attached to my memories and the rituals I have established to honor them. I have added to my Christmas trees with ornaments from my travels and that conjure good memories and I continue to place Ben’s favorites where he always liked and could see them easily on the tree. That feels right to me. I have written about the photo calendars I reproduce each year that contain Ben’s and my favorite photos from Walt Disney World (click here for more on that). Each year, I re-ordered the calendar, which has been a source of comfort despite leading me to wonder if it kept me too grounded in the past. I did not change the calendar from year to year because it has been something that I rely on as it is. However, this year, when I returned to the web site to place my order, I learned that the company has folded. There was that unpredictability that Remy spoke of and it sent me into a complete panic. It felt like another loss. I researched other online sites and was devastated as I tried to recreate my calendar. I realized that I was not going to be able to make an actual replica. This led me to wonder if I should, in fact, try to make a new kind of calendar with other pictures. Ultimately, I could not let go of my Ben calendar. I am not ready, but I still think that’s okay.  I spent hours revisiting our photographs and the original calendar and I created a new version. In true Mary Poppins form, I decided to view this activity as a good opportunity to take the time to really look back and spend time with the memories and then, to choose photos that still strongly stand out among my memories. They made me smile. I learned that my calendar is an important ritual, but that I can also adapt, adjust and even change some of the things I do, while still maintaining my connections to the past. Sorry Edna, but looking back helps me step into the now and look ahead. Still, with the knowledge that I carry the memories and the people in my heart always, in 2023 I intend to be more present in the now, maybe even opening myself up for new romance.

July 2023 calendar. Slightly different arrangement but same photos and memories. I guess that’s a good analogy for grief- the memories may shift somewhat but they are still there and strong.
February 2023 calendar page. Different page but still pictures filled with love and a trajectory of ALS, too.

Ben and I never had big New Year’s Eve celebration. I did enjoy finding a new recipe and cooking a lovely dinner for us. All that changed with ALS anyway, once Ben could not chew. Tonight, Tinker Bell and I will have a peaceful evening. Mommy home and next to her is all Tinker Bell wants on any given day. I will be thinking about the past year and the things that I want to bring with me into the new year. Ben would tell me that you “can’t spell KickASS without KASS.” I’m also thinking of his hero Buzz, who would tell me that I can go “To infinity and beyond.”  I am a bit more cautious, and, always a believer in fairies and fairytales, recall Cinderella and her Fairy Godmother, who reminds me that, “Even miracles take a little time.” I can wait. I do hope 2023 is filled with some sparkles and pixie dust.

The 2022 tree- some old and new ornaments, but Ben’s favorites still remain in the place he liked them.

I hope that everyone has the new year they wish for, or, at least the peace and ability to find a positive view and to gracefully turn upside down with the world when necessary.

Our 2022 Holiday card. Tinker Bell does not exactly share my enthusiasm for taking this annual photo, but she managed to humor me.

Cost of Living- Tales of Care Giving

I have written about theater and its importance in my life (click here to see a prior blog post). It was the thing I missed the most when I was caregiving for my dad and Ben, the thing I turned to for peace of mind, enlightenment and inspiration. It is my favorite form of self-care. Of course, a Disney show is pure magic! Even when it is very difficult, as today was, theater always sheds light on my world.

This afternoon, I saw an off-Broadway play called Cost of Living, by Martyna Majok. It is a brilliant play that tells the stories of people who are brought together and who are caregivers or need them. I cannot deny that I was nervous about seeing the play. I am always emotional, and this is a tough topic, albeit one that is integral to my very being. I was also curious about how it would tackle the subject- the title itself was intriguing.

As it turns out, it was, indeed an intense experience. There were aspects of caregiving- from the physical tasks to the impacts on relationships- that brought back memories that had begun to haunt me less frequently. Still, it was beautifully done. It is important to tell these stories. This is a play that should be required viewing, particularly for those who know and want to support caregivers. The vulnerability and fear were palpable, and so are the strength and bravery. It feels good to know that these stories are making their way into art.

I couldn’t find words after the play. I walked to the Hershey’s store, where, ironically, I was buying chocolate for my school club that is essentially serving as caregivers for the school and local community, and even planning events for next month’s National Family Caregivers Month. My club is a positive result of my own caregiving experiences, and I am thankful that I have been able to channel the hard times to help others. Still, it doesn’t take much to invoke a storm of bad memories and tears.

I ended up needing the long walk home. I rehashed memories of caregiving and of the rough times. I thought about the character who missed his wife and how much I still miss Ben, say good night to him every night and often turn to his desk chair and talk to him. He’s very present in my life despite his absence.

NYC is a big and busy city. No one would notice my crying. That is a good thing, actually. I just needed to be with my thoughts. I put on my “Ben Playlist” and listened to our songs. I thought about the times  when I was rushing to run errands quickly because I did not like to leave Ben alone, and it struck me that no one could have known what was going on at home. I remembered meeting the woman on the street who on the surface seemed unnecessarily annoyed at not finding the address she sought, but I walked with her and, sensing her panic, I found the location for her and then accompanied her. As we walked she revealed her own illness, which was not apparent (click here for more about this experience) and I was thankful that I helped rather than judged her. When the pandemic hit, and some people were complaining about wearing masks, I said that I wore mine because if Ben had been alive, I would have been terrified about potentially bringing COVID to him. in support of anyone feeling that kind of stress, I wore my mask even when guidelines cautiously eased about their necessity in some settings.

There is indeed a cost of living. We never know what is going on in someone else’s life. Are they ill? Are they a caregiver? Are they in grief? One of the most important mantras for me has been that it is incredibly difficult to be a caregiver, AND it is incredibly difficult to need a caregiver. As I have taken steps forward, I have found that the costs have also brought the rewards of insight and motivation to support others. So much comes down to kindness without judgment.

I am grateful to Manhattan Theatre Club for producing this beautiful piece of theater and to the immensely talented cast for performances that will stay with me. I hope that the theater community continues to tell these stories. The fact that the cast included members who know and have lived the experience heightened the power of the play. It is my hope that this kind of diversity will also continue to spread throughout the theater and arts community. It will be my honor to attend and cry in support, compassion and, solidarity.

Here is a link for more information about the production.

Seven Years- Grief, Love and Life To Infinity And Beyond

ALS,Caregiving,Grief,Walt Disney World, Disney
My silly Ben with his buddy, Buzz.

My dear Ben,

Yesterday marked seven years since you left the world. As always, this time is filled with such difficult memories. I do not know what seven years of grief should feel like. I would never venture to suggest to anyone else experiencing grief what it should be like. I only know what I feel. I sat in our bedroom remembering our last night together in the hospice unit. You slept most of the time. I spent the night pacing the halls, sometimes sitting in your room and sometimes in the family room. I wrote in my journal, trying to make sense of the fact that you were going to leave the next day. I could not quite imagine what that would be like, and frankly, I was scared. I’m still grateful that you left this earth surrounded by love and music, and even Disney. But, it also still hurts me to my core.

I never know how I am going to feel on August 26, but my plan was to go to Central Park to bring watermelon to the turtles. I know you would like that, and I know that I feel you with me when I am there. After that, I would watch the new Pixar film, Lightyear, which I know you would have been excited about because of your love of Buzz.

The turtles were delighted with the watermelon, and I had my walk and cry. Central Park is very healing and peaceful for me. I listened to my Ben Playlist and immersed myself in memories. I also let the squirrels cheer me up and I fed them an assortment of hazelnuts, walnuts and peanuts. That is something that has come to bring me a lot of joy.

Central Park- the water was murky but quite a crowd of turtles came for the watermelon fiesta!
I continue to toss coins and make wishes for Ben and my loved ones, and for myself, each time I pass Bethesda Fountain. I will never stop.

Unfortunately, it was also unbearably hot and humid. It reminded me of your last summer, when even as I left the hospital, sometimes in the middle of the night, it had not cooled down at all. I could not make the walk home from the Park and resorted to a taxi for just a few blocks. I came home feeling physically and emotionally awful. Perfect timing, I suppose. Lying on the sofa for hours seemed like the old days of immobilizing grief. I am glad and relieved that I recognized that I was not returning to that place. But, if I was having a setback, I would simply allow myself to  have my moment.

After a while, I did watch Lightyear. Something that helps me when I miss you and feel that you have been cheated of an experience is to try to see and feel things through your eyes. So, I watched the film through your eyes. It began much as your treasured Star Trek episodes, with Buzz narrating just as Captain Kirk did. I cried as I laughed out loud and turned to your chair, commenting to you. I cannot deny that it breaks my heart that you are not here to see the film, even if your spirit is present, but I do feel like we are somehow together.

These US postage stamps just came out. I know Ben would love them!

I think you would be really happy with the film. Although it is not Buzz as we know him from the Toy Story films, I think you would say that it was clever that a film was made about the Buzz that led to his beloved action figure. It has the science fiction aspects that you would get a kick out of, particularly because of the Star Trek kind of references. Buzz has to deal with I.V.A.N., the Internal Voice Activated Navigator, which is autopilot with a series of useless recordings like those that we all know and dread. It also reminded me of the things that were repeated ad nauseum by medical and other professionals that you never wanted to hear, denied and defied. They were infuriating but sometimes made us laugh.

This is one of my very favorite moments, when, despite feeling week and un-superhero-like, Ben met Buzz, who made a big fuss over him!

There are also important messages that touched my heart about grief and the passing of time. Buzz keeps reliving a travel plan, and for him time barely moves, but those around him age and pass away. He has to decide if and how to pursue his mission- to stay where he is or to keep trying to solve the scientific dilemma. Staying where he is would allow him to live and age with the people he knows. As he sees time pass without him, at one point, he meets an older version of himself. Imagine looking at how your life and decisions play out. Imagine not being happy about it. Buzz also has the option of going back in time, though that would also remove some of the people he loved and knew in the life he did live. Throughout all of this, he is watching others live out their full lives in what we consider a normal sequence. I thought of you. You were cheated of a long and healthy life. We were cheated of growing old together.

If it was possible, should we go back in time? Or, jump ahead to see what happens and then maybe even go back and change things? I wish you were here. I wish you never had ALS. But, if we could go back to before your diagnosis, would it mean that you would not get it anyway? What else would change in terms of people, relationships and shared journeys? As things turned out, I am grateful that we had the opportunity to grow very close and say the things that were important and needed to be said. Maybe things just have to happen the way they do, even though they are not as we envision the story and without a necessarily “happy” ending. I have no answer.

Ultimately, Buzz and his crew want to know that they matter because of the missions they undertake. Please know that you mattered. You STILL matter. You are a part of everything that I do. Your experience with ALS led me to support other caregivers. It encouraged me to follow my passion for writing, which has opened new doors for me. It inspired me to find ways to build and nurture a caring community in school. It was hard to face breast cancer without you, but you, and our journey, did help to guide me. Although I still have a hard time embracing it, you let me know that I am braver than I believe, stronger than I seem and smarter than I think. I wish you were here to actually be a part of my life as it unfolds, twists and turns, yet you are central to all of it.

As is my ritual, I read through each anniversary blog post that I have written since the first year after you left. I see that I am purposeful about honoring you, while gaining more control over my own life. I remain reflective, and frankly, I think that is a good thing. I still do watch the video that I made on that first year. And, I made Mickey Mouse waffles, which make me smile because of how much you loved them. Also, because the waffle maker was a gift from a very lovely former student who knew and cared about the significance of waffles in our story. I was very pleased with my plan of visiting and feeding our turtles and watching Lightyear, because it was a way to honor you and us, and to do something new while still looking through your eyes. Yes, I do feel lonely, but I also know that you are always here for me.

Ben always said that waffles taste better when they are shaped like Mickey!

After Lightyear, Tinker Bell and I sat with your Sullys and watched Monsters, Inc. I will never fail to be moved when Sully places that one last piece of the door that will let him see Boo again. I wish I could have that moment, but I know that you are always with me, and I am so thankful for the time that we had.

Halloween 2012, the day we got engaged. Sully and Mike were very excited to celebrate with us!

Ironically, though of course I live and breathe Disney quotes to make sense of life and loss, it was seeing Bruce Springsteen on Broadway last year on the sixth anniversary of your leaving that has had a tremendous impact on me (click here for more). I have reminded myself countless times of when Bruce talked about Clarence Clemons and how much he missed him. He said that it was hard for him to believe that they would never enter a stage together again. He conveyed that with his songs and performances that he was able to visit with these people – ghosts, as he called them- and that they are always with him. Bruce really helped me. These milestone dates are times that I visit with you, and they are difficult days. More importantly, now, you are the grim, grinning ghost whom I know with certainty is always haunting me, in a good way!

Now that you are free from ALS, I hope that you are running, eating and making music. I love you and I miss you every day.


Your Minnie, Abby

Walt Disney World, Halloween
Ben and I at Walt Disney World, Halloween 2011. Good memories are always a comfort.

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

Since today is International Day of Friendship, I’ve been thinking about the lyrics to the song You’ve Got A Friend In Me from Toy Story.

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.

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 relocate, 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.

Given all of these experiences, I had to make decisions about the friends with whom I would share my breast cancer diagnosis and treatment information. Although probably well intended, I did not share information that I felt would yield little more than social media emojis. I did not want to be defined by my diagnosis and I did not want to have to answer a lot of questions, hear unsolicited advice or feed anyone’s idle curiosity. I did not want anyone to feel obligated to follow up with me, either. Again, I am fortunate that I could turn to and rely on a wonderful circle of devoted friends.

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. Not long ago, I compiled a list of things that you can do to help a caregiver. You can find that by clicking here.

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.

Buzz was one of Ben’s heroes, but he loved Woody and friends, too! (July 2014)

If you are feeling lonely, I hope that you will reach out here, or on this blog’s Facebook page. There are also many online support groups- even on Facebook. Feel free to email and I will try to direct you to resources.