Grief

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

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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.

#InternationalDayofFriendship

On Father’s Day, Looking Back to Look Ahead

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I’ve written in prior posts that my dad did not like attention on holidays like his birthday or Father’s Day. He preferred to do things for other people, and not necessarily on holidays.  For this reason, other than feeling a little displaced and lonely without a plan to spend time with my dad, the holiday does not really bring me down. After all, I already miss him. I think that the hardest part of holidays like this is that I am reminded that I don’t really have traditional family anymore because the family I was closest to are not here anymore (click here to see that post).  I do believe that they are always with me, and watching over me, and that is a comfort. The cardinals in Central Park remind me of that, too, which is one of the reasons I have become so attached to being there.  Still, there are those times that I just want to pick up the phone, or feel a touch. I don’t fight the moments of sadness, but today I want to summon the loving and good memories, because I never lose sight of how fortunate I am to have them.

My dad, in one of his favorite photos, with our Miniature Schnauzer, Windy, at my Cornell graduation. Daddy liked to look serious, but he was quite the joker.

I have shared many memories of my dad, from his time in the Marine Corps to his love of animals to his sense of humor and wonderful laugh. More and more, I see how he has influenced who I am, in the good and not so good ways. People might think that I spoil Tinker Bell, as I did Disney and Tiffany, but I come from a family of pet spoilers! He never minded that our dogs loved to chase the squirrels, though he would shake his head as they barked at the same tree while he knew the squirrel had probably climbed to the next village! We loved animals, and I’m sure that he would have been feeding the squirrels with me, thrilled at the little relationships I have developed with my Central Park buddies.

With all of the chaos in the world, I miss getting his perspective, particularly given his extensive knowledge of history and the military. I know that what is happening would have devastated him- he was a proud Marine and a patriot through and through and his mother was from Ukraine (I believe that my grandfather was from Russia, but the borders and countries changed so often then that it’s hard to say). As much as I miss his presence, I am actually grateful that he is not living through what seems to me to be the downfall of this country, but I miss the comfort of his explanations. Daddy was a yeller, and I know that he would be calling me to scream about every outrageous attempt to destroy our democracy. I did trust his judgment on world events because time and time again events did play out according to his predictions. I think back to the days of Dan Quayle, when Daddy and I would rush to the phone to call each other as soon as we heard one of his mistakes. I even got him a subscription to the “Dan Quayle Quarterly.” Now, in light of what he and I would definitely consider damage to the country, Dan Quayle’s errors would be a welcome bit of relatively harmless comic relief!

Daddy’s kind generosity is something that I have tried to share with my students and what has surfaced so beautifully in members of my school club. The students are kind and I am touched when they say that my compassion inspires them. Really, those qualities were gifts from my parents. When I see the many students who do not have fathers to celebrate, for a variety of reasons, I know exactly how fortunate I have been in my life. Sometimes, it has been those very students who most value hearing about my dad and hearing me say things he taught me, such as “you get more with honey than with vinegar.” When he was alive, he often contributed to supplies for the arts projects I did with the kids. While I always enjoyed bringing new experiences to the kids, an added and especially touching aspect of this involvement of my dad was that for many kids, we were providing a feeling of being cared for, a real idea of family.

You could take the man out of the USMC but you couldn’t take the USMC (or the camouflage) out of the man!

Today, I also remember that Daddy never wanted me to be sad. Believe it or not, he was not a huge fan of Disney or animation, but when I showed him videos of my Walt Disney World visits with Ben, he beamed because he said he loved to hear me laugh and happy. I cannot count the number of people who stopped me to tell me that I was my dad’s world. He was the consummate pessimist, except when it came to me and my potential, and I was his consummate cheerleader. At a time when I am pursuing writing and other ideas, I must to constantly summon the confidence my dad had in me that I have never had in myself.

Camera on his shoulder, Daddy always wanted to be the photographer, not the photographed!

Daddy would be humbled that I remember him, which is so odd to me, because he is always with me and is so much of who I am and what I aim to accomplish. Thank you, Daddy, for the lessons you taught me, the laughs and sense of humor you shared, the moral compass and patriotism you instilled in me, and the unconditional love and generosity you showed me.

I love you and miss you, on Father’s Day and every day!

Disney Helps With Mother’s Day Without My Mom

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We were always Mickey Mouse fans!

Today is Mother’s Day. My grandmother believed that every day should be Mother’s Day. The truth is that when my mom was alive, every day WAS Mother’s Day. We were so close that we did not need an actual holiday to celebrate that fact. After I lost her, and then my grandma, I can’t say that this holiday was like other milestones in terms of evoking debilitating sadness. There was a feeling of not belonging, the sting of realizing that I didn’t have their close and unconditional love anymore and the knowledge that my celebrations with them will have to live in my memories. I spent the day at the theater, which is something I enjoyed with my mom, but something that always brings me joy and peace. Living in a house with Grandma, in some ways I grew up with two mothers, and I honor both of them today.

Grandma doing my hair. She crocheted my dress. She was very talented! I get my creative streak from her.

I think about the importance of mothers in Disney films. In many of the animated films, mothers are not present, having died at some point in the childhood of our favorite characters. I have been moved by more recent live action Disney films, where adults and children show emotions and vulnerability as they deal with loss and grief. The films show us that it is okay to be sad and help us to see that people we love and lose stay close in our hearts. This touches me deeply, and it is such an important message for children who are grieving. I previously shared this clip from the live action Cinderella, where Cinderella’s father advises her that they must always cherish their home because her mom was the heart of it, and they must honor her. Cinderella was my first favorite princess and she remains dear to my heart. I especially love that in the live action film from 2012, we meet Cinderella’s mother, who imparts the important advice, “have courage and be kind.” But we see how Cinderella and her father work through their grief and how Cinderella must then cope with the loss of her father. I keenly relate to how she acknowledges the ways in which she her parents with her and honors them in her actions. The way that she chooses her mother’s dress and asks her Fairy Godmother to keep the butterflies because of her mother validate my own gestures. They are also good ideas to share with children who are grieving.

In Mary Poppins Returns, Michael Banks (yes, all grown up and with his own children) must cope with the loss of his wife and help his children. He lets them know that their mother lives in their hearts and memories. He explains, “Your mother’s not gone. She’s in your smile, and your walk, John, and Annabel’s eyes. She’ll always be with us wherever we go.” 

I love when people tell me that they see my mom and dad in me. To this day, I have a hard time when I see that restaurants and shops that I visited with my mom or Ben have closed. It feels like I have lost tangible evidence of our memories, taking them further and further away. I sometimes need to remind myself that I carry all of those memories and the relationships within them in my heart, and by sharing them, I pass them along.

 Mary Poppins sings a wonderful song, The Place Where Lost Things Go, in which she suggests:

Maybe all you’re missing lives inside of you
So when you need her touch and loving gaze
Gone but not forgotten is the perfect phrase
Smiling from a star that she makes glow
Trust she’s always there
Watching as you grow
Find her in the place where the lost things go.

(Composer: Marc Shaiman; Lyrics: Scott Wittman)

As time has passed, I think mostly of the wonderful memories of my mom and Grandma and our time together. I cherish my memories to keep my mom’s and grandma’s spirits alive and honor them. So much who I am and what I do reminds me of them. I get my Peter Pan-like inner child spirit and love of Disney from my mom. You won’t be surprised that one of my favorite memories is when my mom called me from Walt Disney World exclaiming, “Abby, I met Mickey!” My mom was the only truly selfless person I have ever known and I hope that in some small way I have followed her example. Every time I bake, I feel Grandma with me, and she is a part of all my creative and artistic endeavors, as well as my fashion choices. I believe natural caregiving skills, which even extend to my students, were instilled by both of them.

Now, I am a devoted mom to my cat, Tinker Bell, as I was to Disney and Tiffany. My mom- well, my whole family- loved our pets, so their influence was present even as I cared for Disney and Tiffany as they coped with several illnesses. Tinker Bell. Today, as on most days, she is curled up next to me, napping and then waking up to chat and, I imagine, say “Happy Mother’s Day!” With some coaxing, she let me hug her and take a selfie as her gift to me.

I do know that my mom and grandma are always with me. There is not a day that I don’t think of my them and I so frequently speak of them that sometimes people are surprised that they have been gone for more than 25 years. I am proud to honor them on Mother’s Day, though in truth, I celebrate, treasure and miss them always.

Grandma- Always In My Heart

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If you’ve followed my recent posts, you know that February is a difficult month for me, with several anniversaries. My dad’s birthday was February 15 and day he died was February 13. Ben’s birthday was just two days ago. Disney died on February 7. On Valentine’s Day I marked one year since the passing of my Aunt Eleanor. Today, February 23, is the day my Grandma, Dora, died. Since her birthday is coming up, and things have been rough with these milestones, I want to respectfully acknowledge this date and my love for my grandmother, but I will wait until March 5, her birthday – at least a happier date – to share more about her.

I grew up in a house with Grandma. I was with her in that house when she succumbed to cancer. We were extremely close, knew the best and worst of each other and loved each other unconditionally.

Grief,Grandmother,Moana,Gramma Tala,Walt Disney Pictures

There’s nowhere you could go that I won’t be with you. –Gramma Tala, Moana, Walt Disney Pictures 2016

Grandma is a part of so many memories, and of much of who I am, and for that I am grateful. Just as Gramma Tala told Moana, I know that my Grandma watches over me, proud of my baking and my love of fashion and delighted that I always talk about her importance in my life. Sometimes it makes me sad that all of the people I loved the most are carried in my heart instead of actually here, but I still feel fortunate to have known so much love and it’s a comfort to know that they are always with me.

I am thinking of you today, Grandma. You are always in my heart and I love you and miss you.

Grandma and I around 1990

On Ben’s Birthday and Other Milestone Dates, There is Love To Infinity and Beyond

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Today is Ben’s birthday. Just one more lousy milestone date in February. I had no idea how I would feel today so I had no plan.

I woke up and greeted my laptop wallpaper- a picture of Ben- with loving birthday greetings. Tinker Bell and I watched the birthday video that I made a few years ago to honor Ben’s birthday. I still miss his playing the song for me on my birthday, but I like listening to it on his. Another day of memories. At this point, I am just resigned to it. At least this morning I’m thinking of the good memories and not just about the times of ALS and illness.

I decided to go to the Metropolitan Museum of Art, where there is a Walt Disney exhibition. Ben and I loved to go to the Met. He had not spent time there until we began dating, and I enjoyed his reactions to areas and objects that I loved, as well as discovering new things with him. I am an art lover and Ben loved history, so it was fun to see things through his eyes.

I was feeling proud of myself for summoning the energy and motivation to go to the Museum on this day. In my mind, it was growth that I did not end up sitting on the sofa all day, exhausting myself wondering what to do and ultimately waiting until it was too late to do anything but feel down. It showed that I was finding ways to honor Ben and our relationship, but also living in the present. Unfortunately, I did not consider that today is President’s Day AND the beginning of a vacation week for NYC public schools. The lines were crazy. I was told it was at least a 90-minute wait for the exhibition. In the midst of my medical treatments, my health is fragile now and I did not want to compromise my safety, so I left. I am a member of the Met, so I will return, but it was a disappointment on an already sad day. I found myself pondering if it just poor planning or if it was a message that today is not the day to look ahead, even if motivated by Ben and our memories? Thoughts like these keep me on the sofa, immobile and lost.

Returning home to the cocoon of my memories is also retreating to the way I have previously coped with my grief. My go-to on days like this is to watch Ben’s favorite films, including Monsters Inc., Toy Story and Mulan. I do like these moments of communing with my memories, even if they bring tears.

Today, as I watched Monsters Inc. I was most moved by the scene where Mike gets Sully that one missing piece that allows him to open the door and reunite with Boo. I wish I had that little piece of a door. It seems that these milestone days open the door, but my loved ones are not really there. I am greeted by a flood of bittersweet memories. I have to decide when to step back across the threshold into the world of the living. On days like today, it is a sad journey. At the same time, I am grateful for the memories.

I am still Mulan, asking myself, “Who is this girl I see, staring straight back at me?” Grief has let me discover new sides of myself and reflect on who I am and who I want to be. In my opinion, that is never a bad thing. What I always strive for is that if I ever figure it out, that I am someone who, like Mulan, would bring pride to Ben and my family. But, I’m definitely no warrior, except, as Ben would tell you, at a really good sample sale.

Happy Birthday to my Mickey. You are missed every single day and I love you “¡hasta el infinito y más allá!”

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