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

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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.

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.

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.

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.

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.

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.

 Love,

Your Minnie, Abby

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

abby_admin ALS, Caregiver, Caregiving, Disney, Grief, Uncategorized 0 Comments

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.

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