I’m delighted to share another beautiful submission to the Monk in the World guest post series from the community. Read on for Liuan Huska’s reflection A Holy Shitshow: Being Present to Sickness and Dying.
This article is adapted from a post from Liuan’s Substack newsletter: Becoming Whole.
I’m not sure how else to describe the last few months. My mom has been in and out of the hospital five times with complications from stomach cancer. Our car has been in and out of the mechanic four times, not to mention the time my husband and neighbor fixed the catalytic converter at home, laying out the pipes on our driveway like intestines on an operating table.
Over the summer, on our fifth family road trip from Illinois to visit my mom in Texas in 12 months, I sat on the phone with insurance, medical supply companies, and case managers trying get my mom’s feeding tubes, equipment, and formula covered by insurance. Turns out there are no suppliers in network. What’s the point of insurance when no one works with your plan?! What a shitshow, I muttered under my breath.
In the next breath, I looked up at my mom laying on the hospital bed. She has suffered so much in the last year with treatments and symptoms. These are the last months of her life. Part of me wants to fast forward through the agony of watching my beloved Mama deteriorate. To reach the relief of knowing she’s not suffering anymore. And honestly, the relief of not having to feel responsible, of having to be on call.
Somehow Holy
My mom has been what you might think of as a typical Asian parent – focused on achievements and money-making careers; loving you through food but without a capacity for talking about emotions; coddling us children into adulthood. When I was a child, my mom gently wiped my bottom and spoon fed me for more years than my American husband thinks is healthy. Three years ago, she had more energy than the rest of us when visiting our family in Brazil during our gap year.
Seeing her like this now feels like too much to bear. It’s easier to switch back to problem-solving mode, to keep on the mask of the can-do medical advocate. Actually, I’m really good at being pleasantly annoying to customer service agents in the most businesslike, you’d-better-get-this-done-or-you’ll-wish-I-didn’t-know-your-name-and-number kind of way.
But being fully present to my mom as she dies is harder. I breathe deeply and remind myself: this is a holy time.
So these two things are true at once. This is a shitshow. And: this is a holy time. How can the pain and suffering that I must bear witness to with my mom become a portal to something that shimmers?
Thin Places
I ended up finding a feeding pump off of Facebook Marketplace for $100 instead of $1,100 from the medical supply company out of pocket. The seller, Frank, told me his wife had used it.
“What happened to her?” my mom asked later. “Well, I guess she died,” I replied. A holy shitshow kind of silence ensued.
My husband and I managed to get my mom discharged from the hospital on the day of our 16th anniversary. The next day, we drove 16 hours straight with her and our kids back home to Chicagoland. We wanted to get her started on a marketplace insurance plan up here by the end of the month before she ended up in the hospital again and wasn’t able to leave Texas for good.
Now my mom has been living with us for over two months. We love her and are grateful to be able to be with her in the all-too-early autumn season of her life. At the same time, caregiving is hard. My husband and I sometimes joke that we are living in purgatory. The forward motion of our lives, of making plans for some hoped-for future, has been put on pause by the all-consuming present demands of taking care of someone who is dying.
But another way to frame this season is to name it as a thin place. For the Celtics, thin places are areas in our geographies (whether physical or temporal) where the lines fade between this world and whatever lies beyond. I can see my mom fading in her life’s energy. I imagine that as her presence blurs here, perhaps she is becoming more solid in whatever dimension she is headed to next.
In the midst of the burdens and heartaches and plain annoyances of caregiving, can I stay present for the moments when the lines blur between this life and the next? Can I be alive to the presence of our beloved dead among us? Can I awaken with awe to the transformation that is happening—to my mom and eventually to each one of us?
Liuan Huska is a writer at the intersection of ecology, embodiment, and faith. She co-authored the forthcoming children’s book My South American Classroom about her family’s gap year. She is also the author of Hurting Yet Whole: Reconciling Body and Spirit in Chronic Pain and Illness. Listen to our Lift Every Voice Book Club conversation with Liuan here.
