Sometimes... I Feel Like a Ghost

I haven’t been able to find words for months. They weren’t lost or misplaced like a set of car keys might have been, they were just gone, and I was haunted by the emptiness they left.

Then, I read:

“But as I said, it wasn’t my life that was going on—not the life I’d had. As I said, I was a ghost. The truth is that, even all these years later, I remain a ghost. You wouldn’t know it if you saw me. I’m not morose or retiring. I laugh a lot. In fact, I’m genuinely happier than many people I know. But I can’t help but feel that, on one level, I do not exist”.
Vauhini Vara, Searches, Chapter 10: Ghosts

How it Started

What started as a week off from writing, turned into months of struggling to show up. Even my journal pages, that have always been my most grounding practice, remained blank. Paragraphs were impossible. Writing became dotted lists and random thoughts connected by doodled arrows that lost their meaning before I could pen their point.

Image: Kelly Sikkema, Unsplash

Was this writer’s block? Me, without words? No one I know would consider this possible (haha, side eyed emoji).

But, when I read “Ghosts”, something stirred.

“Ghosts”, also published in The Believer and discussed on This American Life (around 23 mins in), shares how Vara tried to write about her sister, and her sister’s death, and how she processed the layers of loss with the help of AI. I hesitantly connected with it, going back to read her words again and again, before deciding she was tapping into raw feelings I was having about being a caregiver.

Being a caregiver

I am told that I’m “sandwiched” between caring for my mother-in-love (her term) with dementia and my daughter with her multiple chronic illnesses. My feelings on care though, are deeply layered and nuanced around the idea of being sandwiched between who I was before and who I am now. Feelings that include joy and purpose, but also, frustration, isolation, loss, and grief.

Grief, for the parts of me that took a time out in order to make everything work and for the time that continued to tick on. Time that moves differently depending on the room I’m in. Time that makes caregiving a daily practice of being hyper-present while living with unrelenting uncertainty. I feel both constrained and unmoored. Its difficult to describe, but confronting time seems to highlight the wisps of grief (and guilt) that touch small moments of almost every day, and lately I’ve found myself haunted by the spaces left from the things that never were and couldn’t be. Are there words for that?

Without sadness or remorse, and with crystal clarity, I can say that my life splintered when I became a caregiver to my mother-in-love and splintered again when my daughter got sick.

I am an excellent caregiver.

I’m an advocate, and a champion of care. I’m a loving presence, a reliable witness, and a fierce believer in possibility. I find joy in caring, I don’t shrink from chaos, and I feel blessed by the relationships forged in these liminal spaces.

And…

Being a caregiver has changed so much about how I think about EVERYTHING. From how I parent to how I show up (and often can’t show up) in the world. Who I am, and who I can (or can’t) be in all the roles I move through and between. There are so many roles. It is exhausting.

Sometimes I crack, mostly I weather.

From the vantage point of experience I can see the storms on the horizon, yet feel there is little I can do to stop them. I try to find peace by focusing on what I can do today, because I’m way overwhelmed by the warnings that go unheeded, the messages that are misinterpreted, and the cries that are hidden by the creaks of an old house.

I feel ghosts would agree.

Like my fellow witness bearers, I shift between multiple worlds, squeezing the last drop of energy I have to build and maintain the bridges between them. My feet barely have time to touch the ground.

And while I am here and there; I’m not sure I can be fully anywhere. I worry that I’ve lingered too long in the in-between.

Ghost stories

Ghost stories have long been some of my favorite stories. Its not just the lore of a crackling campfire scare. Its the manifestation of the perpetual unknown. The reach into a dark room. The dance with fear and all the things we don’t like to talk about, because the unreal, is somehow less scary than what we know to be true—that the need for care will come for many of us and we are not prepared.

Lately, I’ve been thinking about ghosts as a witness to this misdirected fear. Not in a creepy, red eyes in a dark corner way (well, maybe a little). But more from a Scrooge haunted place that longs for connection. Connection to ourselves and connection with each other.

It’s more than a feeling though, it’s a desperate whisper that asks us to care about (and for) each other. “Come and see” I might say, but it goes unheard. The connective tissue stretched so thin I can see through it. “What do you need” they might say, but that was long before I knew what I needed. What I need is something so powerful that it simply allows us to sit with caregivers as we fade in and out of our own lives. I need empathy.

Empathy requires curiosity. It requires the ability to listen without judgement or to at least acknowledge judgments and preconceived ideas. Empathy means being present. It helps with perspective-taking, and the willingness to understand another person’s experience from their point-of-view. This is important. We do not have to understand the world from a single point-of-view. We can choose to connect, accept, and validate multiple views without it impeding on our personal views. This is care. This is dignity. This is humanity. Without it, I fear we become ghosts trapped in a time loop between our-selfs, waiting, not for release, but for a remembrance of wholeness.

Is this my ghost story?

To be fair, I’m pretty sure I exist. I see the effect in the places I haunt. I bring joy, laughter, and stories. And, even when there are times that I’ve been completely off the mark and feel ineffective and incompetent, I have been a presence, a hand to hold, and someone that, “I love you,” can be whispered to.

I show up. I bare witness. I linger, still, trying to conquer up the words that will restore me.

With care,
Tami Lynn