I was writing about my North Star Nurse recently, based on a prompt from
and the On Being crew’s Hope Portal:
The introductory post for The Pause impressed me with its brevity, as well the inclusion of thoughtful writing prompts. They wove together the empowerment of self-reflection with the medicine of writing and storytelling. Whether they realized it or not, Krista and Crew are prescribing Narrative Medicine (NM) — a concept and an intervention which drives and sustains me (as a nurse, parent, partner, and human earthling).
If you’re new to A Bedside Campfire/Be Fearless & Play, you can find my recent post about Narrative Medicine here. I’m also including this short video from Dr. Dave about the science behind NM, with an easy-to-use tool called the 3-Minute Mental Makeover (created by Dr. Dave, a Pediatric Cardiologist).
I tend to tell stories through from my personal/professional perspective (as a nurse, patient, partner, daughter, etc.). You may notice a them of “Modern American Healthcare” and the nonlinear (often tumultuous) journey experienced from both sides of the bedside. My North Star Nurse is a recurring visitor — her mindset, vigilance, and friendship a guiding light on my personal and professional paths.
I get advice and direction from various sources: People, places, books, experiences. Creators making medicine for the masses. Mentors and confidants fueling my passion for access to good, affordable care — and keeping my moral compass properly calibrated. I’m sorry to say, I tend to deliver more complaints than solutions. Because the problems I’m staring at are nuanced, sticky, wicked problems — and therefore have complex solutions requiring input and assistance from many collaborative groups of people. Often, I think I know the answer — a Care Co-Operative, or a Non-Profit Sliding-Scale CNA Training Program, or a Care-Giver Support Group — only to find to realize my dreams aren’t based in reality. At least, not in this reality.
So, what’s the story here?
The stories swirling through my consciousness while piecing together a brighter future ebb and flow from hopeful to despairing, fulfilling to heartbreaking. Sometimes remembering a complicated story feeds my anxiety — worrying about possible futures that await me and my family when our bodies and/or the Healthcare industry fails. Other stories fuel my passion for advocacy, and nourish my desire for improved access to good human care (again, from both sides of the bedside). I’ve seen the “best” and “worst” outcomes, the depths of abject suffering and the height of total elation. We humans experience a spectrum of comfort — dancing between choice and chance — all the while moving indefinitely toward a sunset barely visible over the horizon.
These stories beg to be told. They nag at me when I’m in meetings at work. They nudge me as I’m laying down to sleep. They tug at my heartstrings, beckoning, “Jessie, just tell someone about this. People need to know… what they don’t know is hurting them”.
So what am I to do about this bothersome collection of care-related stories? Bring them to the internet, of course! Now, that’s not to say I plan to spill the beans on trade secrets or violate privacy acts with my Substack posts. Nay! The stories closest to my heart could happen to anyone, and with a little finagling, can easily be told without doxing friends, ousting family members, or breaking nursing promises. I keep it professional, but still personal, and all of this is me and in no way represents the opinions or beliefs of my employer (or anyone else, for that matter). They’re just stories — based in reality, and seasoned with hope for better outcomes next time (and sooner than later, please).
Blog + Podcast = Blogcast!
In the audio for today’s post, I introduce my North Star Nurse, my views around human bodies, and the big “D” word (trigger warning: the D word is Death. It’s always Death. Dead. Die. Death).
For those who don’t know, my North Star Nurse died a few years ago after a troubling cancer journey. She hasn’t always been dead, but she is now. If I’m having a particularly rough day, I think about her being alive at work — or I think about the fact that she’s dead and doesn’t even get to suffer through this stupid, awful day — so suck it up, buttercup.
When she was alive, my North Star Nurse was a humble servant, a magnificent parent, a loving partner, and the epitome of what it means to be a bedside nurse.
When she died, I knew I had witnessed something miraculous. I didn’t know what, and still haven’t gotten to the bottom of it. But her story feels like a precious beam of light. A delicate bubble. A fragrant blossom. A pulsing ripple, growing with time. She was the first person who came to mind when I read this prompt from On Being/The Pause:
“Who have been the ‘live human signposts’ of muscular hope in your life across time? Hold their faces and the qualities of their presence in your heart and in your mind’s eye in the days to come.”
Of course it’s her — other humans, too, of course. But there was something special about her life and how she lived it.
Her impact ripples through all of our collective care/healthcare stories. My opinions about American Healthcare are continually evolving, along with my opinion about our human species and this unbelievable real-life story unfolding in America. The Ship of Modern American Healthcare is being aggressively dismantled — the crew, passengers, and care partners suffering the consequences — while the tugboats Insurance & Medicare spray us with kerosene.
What is even happening right now??
If you aren’t familiar with the story happening in Healthcare right now, then ignorance truly is bliss. Savor it a moment before you proceed. Savor not knowing your body will disable. Relish in your ability to care for yourself, do as you please, and answer to no one when you’re ready for the next activity or moment of rest. Whether you’re on shore or flying 6,000 feet above, if you’ve never been aboard the Ship of Modern American Healthcare, the stories you’ll hear are almost unbelievable (but true) — and the most dastardly part of the truth is: this future is waiting for Every. Single. American. Visitor.
Not just the “citizens”.
Every VISITOR.
The Cracks Are Where The Light Shines Through
Anyone who comes to this country risks suffering the consequences (financial at best, mortal at worst) if their body malfunctions on American soil. You could end up in an Urgent Care or Hospital Emergency Department, then sent a bill you can’t afford for services you didn’t ask for at prices you’d never believe.
Just “cross your fingers” … Thoughts and prayers. Will they, Won’t they — Can I afford this service, treatment, evaluation, assessment, test, medication…?
Healthcare shouldn’t be a forking mystery. But for most, it is.
This is not sustainable.
We do what we can with the tools we’ve been provided.
And the tools are antiquated. Inadequate. Insufficient.
But one of them comes from the bottomless well of human experience. One tool given to anyone on both sides of the bedside:
Our Words. Sourced from our Minds. Formulated by Thoughts. Morphed into Actions.
Our words are powerful. My words are influential — even right now, as you’re reading, my words prompt your brain think about what I’ve said so far, and about your own care journey (or lack thereof), and the gaps in care. But now what? Did I bring you here to create worry? To cultivate fear?
NO. (I mean, not exactly. There might be some worry, but it’s worry with a purpose).
I’m here to encourage you to find a crack. Your crack.
Find the imperfection, the opportunity, the weakness in the system that bothers you the most. The crack you fell into, stumbled over, watched someone tumble through…
Find the crack — and noodle on it. Why is it a problem? Does it bother you? Could it be better? How? Who needs to know?
Now, go DO SOMETHING ABOUT IT.
Call your state and/or federal legislators and speak up. Share your story. Shine a light on the cracks. Help those up above (the ones making all the decisions and the “big bucks”) understand what it’s really like here at the bedside.
These cracks in the Healthcare industry — The absurd amount of data being gathered by Healthcare works on behalf of Medicare — Billing & Coding — Penalties for “potentially avoidable hospitalizations”… I could go on…
What’s In My Crack?
Rather than losing sleep about ALL of the Healthcare woes, and to avoid trying to boil the ocean, I decided to focus on one (or two) of the biggest cracks. This one’s a doozy, because it’s not even covered by health insurance or Medicare.
It’s not just a crack, it’s a chasm.
My worries are swirling down to the bottom of a cosmic gap in care: The Lack of Accessible, Affordable Informal Caregivers (CNAs, HHAs… family, friends, neighbors, etc.).
There aren’t enough people willing/able to care for people, and more people will need help before we’re ready to provide it. Within a decade.
And it’s coming for all of us.
The most painful stories in Home Health are about not having enough of the right kind of help in the home. Inadequate of training, support, and compensation for the care they provide to the body of another. Another tribe. A stranger.
When good care is “cost prohibitive” — we see workarounds. Making do with a volunteer from church instead of hiring a caregiver through a reputable agency. Paying for the minimum number of care hours per week to keep costs low. Lying to doctors and Healthcare Workers about the amount of assistance you have available so they don’t stop you from going home…
Workarounds are born of necessity — and many result in adverse outcomes for patients and the people who care for them.
But how do we fix this?
Start by looking around. Get to know your neighbors — meet some adults over 60 — ask each other about experiences in Healthcare and Care in the Community.
Learn the stories of your community.
Discover how others have navigated the tumultuous waters of Modern American Healthcare.
Brainstorm ideas for improvements — make tiny nudges — create big waves.
I can’t tell you what to do — but I will encourage you to DO SOMETHING. Please.
That’s all for today! I’ve got a lot on my mind, and I look forward to continuing this dive through the cracks in American Healthcare.
Thank you for being here. I appreciate you spending any bit of your time with me!
~*~*~ Take good care ~*~*~
Love,
Jessie
PS: Here’s a song for the road — Caamp: Lavender Girl
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