Celebrating a year on Substack!
You've taught me a lot, thank you
Thank you, and you, and you, too.
I have been so humbled by how many people are reading here. If you have subscribed, shared, followed, lurked, commented, or otherwise helped spread the word, I am grateful to you. A year ago, I was looking at a blank screen and today there are close to 700 you subscribing and another 1,200 following these posts.
Thank you to people like Trisha, who wrote a beautiful personal story in the comments of one of my posts, leading to a meaningful conversation among 300 people. Thanks to Jane at The Terminal and Amy at Nevertheless, Persisting, for referring their readers here. Thanks to collaborators like Jan, Alyssa, and Ann Marie who shared their stories in this space. Thanks to people like Phil, who sends me Substack articles to read and suggests people I should follow, and to the folks who told me to check out Hulu’s “Dying for Sex” series or Elizabeth Gilbert’s latest book, All the Way to the River.
Thank you to the people who have grabbed me at conferences and added random postscripts to emails just to say they are loyal readers. Thanks to former students who show up in my subscriber list like a wink from the past. Thanks to friends who text me kind words on the mornings when these essays publish. Thanks to people from my past, like the TWO people I used to babysit for as a teenager who have found me, left generous comments, and told me they have pre-ordered my book and are telling their friends about it.
Thank you to the army of new people, the people who I have not met but have joined the conversation. You all help me see where I should be reading and listening. You are talking with me, sure, but even more amazing is how you build conversation with one another on some of these posts. One time I responded to one of these comments, and the commenter wrote back, “Actually, I meant that for the other commentator, not you!” HA! Right on!
This community is the richest part of my experience here, the part I hoped for but wasn’t sure would manifest. Thanks to all of you.
I started writing here because my book editor suggested it, not because I had a secret urge to create a newsletter.
Even though I came at my book project with years of experience with academic research and publishing, I needed to “build platform
I had heard of Substack but not checked it out. I started by lurking for six months, where I definitely enjoying reading other people’s work but was intimidated about how I was going to set one up for myself.
I eventually hit “publish,” telling myself I would give it 2 years, at least until after the book came out. Since then, I have published 30 posts.
I’ve worried that I don’t publish frequently enough. Are my posts too long, too short? Too formal or too colloquial? [Hellooooooo, is anyone out there? 🎤 (tap, tap)] I’ve worried that I am not engaged enough on Notes. I’ve worried that what I’ve written is too personal, not personal enough, too didactic, too story-driven. My photos are too staged, too au naturel, or too personal. I worry that you might see that I am a real person.
But once I jumped in, I started seeing my work through your eyes, which has deepened my understanding of my own writing and research. Engaging with you has helped me understand what stands out to you, what resonates, how things look from your perspective.
I learned that you like knowing who your authors are as people, and you worry about gatekeeping of information around conditions like long COVID, which shares commonalities with end-of-life even while being quite different. You were generous with your engagement when I posted a sneak peek of the introduction of my book. You definitely shared some of the concerns highlighted in the story of Elizabeth, who declined medical treatment for her breast cancer and died at home (I will post more soon about the comments under that post).
The funny thing is that I got into this whole book project because I wanted to bring research results to real people who needed actionable information; I wanted my hard-earned research to come down from the ivory tower. I underestimated the extent to which that would also require me, as a person, to come out too.
Turns out, it’s all okay. Substack is a diverse place with lots of topics, voices, and styles and there is room for me to show up alongside those people who have 100 posts planned out in advance. It’s okay for me to show up as I can manage.
Here are other unexpected but fun changes book-writing and Substack-writing have brought out in me, gallery style:
Top row, left to right:
Reconnected with my friend Ann Marie and we wrote a 2-parter about her husband’s passing and her experience with healthcare and advanced directives. And by reconnecting I mean I heard her voice on the phone for the first time in 30 years. ❤️
Reading more books as opposed to academic articles!
I went on TV even though I was super nervous and can’t even style my own hair.
Middle row, left to right:
I’ve been going to more bookstores, like in the old days before I wrote so many academic articles! (Bart’s Books in Ojai, CA)
I’ve made new author friends, gone to book signings, and gotten braver about things like posting a picture of myself having fun on a random Tuesday.
I’ve been hanging out more at my local libraries. Editing, reading, chatting with people in my community.
Bottom row, left to right:
I had photos taken by a new friend of an old friend, who I met because I got brave about doing a local TV news segment with them.
Reconnected with my friend Alyssa and we wrote about her mom’s end of life. When she came to town we had tacos in-person after not getting together in 20 years. ❤️
I made more author friends and have been able to read their books and sing their praises! Jane and I moved the conversation to zoom, where we wrote an editorial coming out soon (very exciting—I’ll link it here when it comes out).
I never would have foreseen these changes when I decided to start this book project and this Substack.
What next?
My book is coming out September 1, so this will be new territory for me, but I plan to stay the course with writing every other week. I will keep writing about topics related to health and healthcare, including medical gaslighting and how systems shape our experiences and what gets presented as our “choices.” End-of-life will continue to be on the docket, though I am also starting to think about next steps for a new research project.
For now, subscriptions will stay free. If you like this work, I hope you share it widely— whether that is through referrals, restacks, subscriptions, or word-of-mouth.
(If you want to financially support my work, please consider pre-ordering my book! 🤗)
What else would you like to see me writing about?
I am all ears. Please share in the comments. More stories? More explainers? More research connection? More behind-the-scenes?
I am excited to see what happens next, and this professor will continue to enjoy being a student among you readers and writers!
Yours in solidarity ✌️
Karen
