Finding Inspiration During Caregiving and Grief

Recently, I saw a Broadway musical called, The Prom. In a nutshell, the plot is that in a small town in Indiana, a girl invites another girl to a prom, which causes a huge controversy. Some Broadway actors whose careers are floundering decide to get some positive press for themselves by becoming champions of the issue. It was a fun time with good music and a strong and positive message about acceptance, standing up for yourself, and love. Little did I know that at this show, I would discover a song called We Look To Youwhich so perfectly expresses how much theater means to me and how it has helped me during rough times of caregiving and grief. I am sharing the lyrics here, as well as a video with the song for you to listen to. You may not share my passion for musical theater, but I think that many of you can relate to the peace that you find in your passion, whatever the hobby or activity.

This song is sung by the principal of the school where the prom will take place, in a conversation he has with one of the actors who is visiting the school about how much theater has meant to him.

We Look To You
Music by Matthew Sklar
Lyrics by Chad Beguelin
Mr. Hawkins: Michael Potts
Dee Dee Allen: Beth Leavel

HAWKINS:
My days have little glamour

Writing memos, making calls
And wincing at the grammar
Written on the bathroom walls
It’s all school supplies and budget size
And wading through red tape
That’s why I love the theater
It’s how I escape

DEE DEE:
So, theater is a distraction? Is that what you’re saying?

MR. HAWKINS:
No, a distraction is momentary. An escape helps you heal

We look to you
To take us away
From the soul-crushing jobs
And emasculating pay
When our lives come up short
And our hopes are sad and few
You whisk us off to some place strange and new

We look to you
In good times and bad
The worlds you create
Make the real ones seem less sad
The curtain goes up
And every now and then it feels as if we’re coming home again
Yes, coming home again

We need a place to run to
When everything goes wrong
When the answer to each problem
Is to burst into a song
And standard rules of logic just simply don’t apply
When people dance in unison
And no one wonders why

DEE DEE:
You make it sound so beautiful

MR. HAWKINS:
We look to you
As strange as it seems
When reality goes to scary new extremes
So don’t ever give up
And this I guarantee
Next time you think no one cares
You can look to me

DEE DEE:
Thank you, that means a lot

MR. HAWKINS:
No, thank you

I’ve written a lot about how theater is one of my favorite things about New York City. When I was caring for my dad and Ben, I was not able to attend theater very often. I even started to lose touch with what shows were running. I was not even aware of the Hamilton-mania. That’s unusual for me. On the occasions when I was able to go to the theater or ballet- usually if Ben’s daughter was willing to visit with him-my experiences were not as magical as they had been. I felt like I was selfish for wanting the time for myself given what my dad and Ben were going through. There was guilt about going out without Ben. There was sadness because even though we did not always go to the theater together, the knowledge that I would never again go to the theater with him cast a shadow over the event. Also, there was always the worry about what was happening when I was not at home, so intermissions were spent calling and then, when he couldn’t speak on the phone, texting. I never completely escaped.

The arts- particularly theater- are where I find my peace of mind. I feel excitement when the overture of a musical begins and I am energized when I see a fantastic song and dance number. Song lyrics speak to my heart. I remember being in the hospital one day when pianist in the atrium began playing Something Wonderful from The King and I, probably my favorite musical. I stopped and listened and cried, thinking of the lyrics and how they expressed that the King didn’t always say the right thing, but he would suddenly say something perfect and beautiful. I could picture the scene where the song is sung and I cried thinking about how life had changed since we could just sit and watch a movie without a care. I related to that in the tension that Ben and I would feel and express on the difficult days of ALS. When I spent long days and nights at the hospital with Ben, it was a Disney song, One Dance that finally allowed me to react to all of the profound sadness and thoughts of losing Ben that I was feeling but did not even have the time to acknowledge.  You can read about that by clicking here.

Listening to We Look to You during The Prom was hearing exactly how I feel about going to the theater. Theater was and is my escape, and I had difficulty fully indulging in that escape when I was caregiving. It reminded me of how nearly impossible, yet vitally important, it was for me to hold onto my identity when I was a caregiver. At the same time, as I watched Ben and my dad losing their lives, I seriously struggled with not wanting to be selfish when I expressed a need for time for myself. Losing myself while I was losing my loved ones and, in the case of Ben, a future that I foresaw, added to my devastation, resentment and frustration.

After I lost Ben, I had to think about how to put my life back together. Seeing my friends and planning to go to the theater were my priorities. I went through motions and kept myself distracted during the school year, but I was worried about my first summer alone, as the first anniversary of Ben’s loss approached. Would I be consumed with memories of the prior summer, reliving days in the hospital and ultimately, losing Ben? It didn’t take long to decide that I would get tickets to all of the shows that I had wanted to see but could not while I was a caregiver. I was excited about it. I full expected that theater would allow me to lose myself, and, hopefully, heal and rediscover myself. But, once in the theater, I lacked enthusiasm. It wasn’t that I didn’t enjoy many of the performances. But, it was not the same. I heard from so many people that I had my “freedom.” Indeed, my time was my own, but I was not free from grief. Being in the theater without him only reminded me of how alone I was and how much I missed Ben. I felt guilty about engaging in life. I felt like I should not and could not really enjoy myself. It felt wrong to in any way convey, even in my own mind, that it was a relief to be free of the caregiving because that felt like I was saying that I was relieved that Ben was gone. So, there I was at the theater, my favorite escape, not escaping the bad feelings and, in some ways, feeling worse.

I do reflect quite a bit on how I navigate life and grief. Now, more than three years have passed, and I have finally adjusted to going to the theater without Ben. I am always keenly aware of his absence, and yet, I know that he is with me. I don’t feel the conflict of feeling guilty for feeling good, though I do sometimes struggle with anger that he was cheated of so much life and that we were cheated of so much time together. I have re-embraced the fact that I loved the theater since I was a child, and enjoying theater is an important part of who I am.
I am truly grateful to the many performers, on stage and screen, and the writers, musicians and lyricists- the creative souls in the performing arts- whom I have looked to and who have touched my heart in so many ways... Click To Tweet

I noticed that when I left my apartment and headed to meet my friend for brunch and then the theater, that I was not dwelling on how I was handling it and reminding myself of how life has changed and I am alone. I did not have to coach myself to have a good day.  Instead, I looked forward to seeing my friend and enjoying the show, and I realized that, although changed from my experiences, I have come back to life and to myself. I frequently attend theater. I laugh and smile, and sometimes cry, with my whole heart, because I am lost in the production. It is not just a distraction that is barely holding my attention. There are certainly times that I think about how Ben would react to a performance because something particular reminds me of him. Watching the musicians has become much more significant to me because of how much Ben loved live music. There are still unexpected triggers of sadness and setbacks, but, going to the theater is a huge comfort and joy that helps me heal and feel inspired to live, laugh and love. My friends know that I have always been starstruck, but I am truly grateful to the many performers, on stage and screen, and the writers, musicians and lyricists- the creative souls in the performing arts- whom I have looked to and who have touched my heart in so many ways, in good and bad times.

Last summer, I created a webinar called, Finding Inspiration and Protecting Your Identity During Caregiving. As caregivers, we put ourselves aside for the people we love. The needs of my dad and Ben were immediate and urgent. My need to take care of myself could be addressed at some other time. But, as all caregivers know, “some other time” rarely, or easily, appears. Things like attending the theater with any kind of regularity were not possible. My webinar explored my own search for ways to take care of myself and hold onto my identity, while being Abby the daughter and the wife and the caregiver and coping with anticipatory grief, as well as feelings of guilt, selfishness and desperation, If you’re struggling with balancing care for yourself and your caree, I hope you’ll find in this webinar some strategies for finding ways to do things you love, that keep you in touch with yourself, in a manageable timeframe. Click here to access the webinar.

Please share your own struggles or strategies for holding onto your identity during caregiving in the comments below or on the Pixie Dust For Caregivers Facebook page. Let’s help each other to heal and grow.