-- Author Interview --
Today we have the honour of interviewing author Karen Warner Schueler about her non-fiction book - The Sudden Caregiver: A Roadmap for Resilient Caregiving - and her experiences in the world of writing. Karen tells us that when her late husband was diagnosed suddenly with terminal cancer, she suddenly became a caregiver - and in her book she explains each stage of caregiving, helps navigate through each unique situation, and she includes personal stories from many different types of caregivers. Karen used her knowledge gained from being an executive coach with a Master’s degree in Positive Psychology, writing a roadmap for caregiver resilience. Karen lives in Beaufort, South Carolina with her husband, John, and their dog, Fenway.
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Q: Who inspired you to pursue a career in writing?
A: My late husband, Joel Kurtzman, was the writer in the family and he was my inspiration. Over his lifetime, he published more than 20 books on global business and economics and two works of fiction. He was an editor at The New York Times and Harvard Business Review, a Senior Fellow at The Milken Institute, and was founding editor of two leading publications, Strategy + Business and Korn Ferry’s Briefings On Leadership. Joel died of cancer in 2016 and the book I wrote – which is for him – draws upon my personal experience as his caregiver.
Before his health took a final downturn, the two of us sat in opposite corners of our living room, feet up on our respective ottomans, typing away at our laptops. At one point, he looked over at me and asked what I was working on. “Just finishing something I owe a client,” I said. “How about you?”
“Well,” he said, “I convinced my publisher we need a book on how to beat cancer.” At the time, Joel was enrolled in an experimental clinical trial and his response to it was promising. Perhaps we shouldn’t have, but we both believed there might be more time than there actually was. We held Joel’s funeral five months later. The day after, I found that very proposal in his desk drawer. The first line of it was, “I’m one of the lucky ones.”
Joel’s life ended way too soon, and with it, his work in the world. While I’m not an expert on the global economy, I decided to extend Joel’s legacy by writing about something I know all too well. With my book on sudden caregiving, I’ve shared some perspectives on caregiving – drawn from my degree and my conversations with other caregivers – that, if adopted, could change the caregiver’s story in the world.
This book took four years to write. To revisit our journey was emotionally demanding much of the time. But knowing I was doing it to create something generative for others out of the experience kept me going.
Q: Tell us something about yourself.
A: The most important thing to know about me is that I’m a mom -- and a “nan” to my two grandsons. For 14 years, I was a solo-working-mom until I married Joel just after my daughter, Katie, graduated from high school. I have the greatest respect for working moms, especially those who are raising their kids without a partner. It is one of the hardest things I’ve ever done – and one of the most fulfilling – it’s an awesome responsibility, in the true sense of that word, “awe.” In many ways, so is being a caregiver. That blend of responsibility and resilience felt familiar to me because of my experience raising my daughter on my own.
Katie – 36, and a working mom herself now -- lives in San Diego with her husband, Tim, and their two sons – my delightful grandsons, Oliver, 3-1/2, and Lucas, who just turned 1. People always tell you that there’s nothing like being a grandparent and I had no idea what that really meant until my son-in-law placed Oliver’s tiny hot swaddled body in my arms just after he was born. It had been over a year since Joel’s death at that time and I was still in the grip of grief. But the joy that moment brought to my heart was like a joy I’d never known. That moment was the turning point in my grief, when I began to evolve out of caregiving and reclaim my life. My love for those little boys knows no bounds and not being able to visit them is one of the toughest challenges of Covid.
As far as adjectives my friends would use to describe me, I think “creative” would be at the top of that list. Not only in writing, but in creating leadership experiences for my clients, in creating beautiful and welcoming spaces in my home. Lately, now that the book is written, I’m creating on-demand classes for caregivers. I used to paint and draw and there was a time -- when we didn’t have two nickels to rub together as my mom would say -- when all the paintings on the walls of our home were painted either by Katie or by me.
Another form that creativity takes is creative problem solving. In a way, as an executive coach I’m a professional problem solver. I have an optimistic streak, and I believe in our innate ability to overcome adversity. Until my husband was diagnosed with Stage IV cancer, I almost never met a problem I couldn’t solve.
Friends would also say I have pretty high standards. Once, a guy I was dating for a while when Katie was little, gave me a tee shirt that said, “Mediocrity is not an option.” He meant it as a compliment, and I took it that way.
Finally, they’d probably throw in “persistent” and “determined.” Evidence of that: I’ve run two marathons and two half-marathons. I decided to return to graduate school at the age of 58 to get my Master’s degree in Positive Psychology at the University of Pennsylvania. I’m still growing my business and loving it, even though I turn 67 this year. Oh, yes, and I wrote a book!
Q: How does writing help you make a difference in the world?
A: At latest count, AARP is estimating that there are 53 million informal, unpaid, family caregivers in the US alone and caregiving makes up roughly 11% of the populations of most developed countries. While caregivers are often described as an “army” or a “network,” the truth is more than half of all caregivers go it alone. They are not inclined to ask for or accept help. I wrote my book to share what I had learned – the hard way, making it up as I went along – with caregivers who are coming up behind me. They might not ask someone else for help, but they might turn to a book.
A central theme of my book is what I call “The Caregiver’s Paradox.” Research often paints caregiving as both depleting and stressful – which it certainly is. But I also found, in my own experience and experiences described by others – that it is also a source of strength, joy, and well-being. It isn’t one or the other, it’s both. But resilient caregiving doesn’t just happen. You have to take intentional action to cultivate it and hold on to it, which isn’t easy. My book presents a roadmap based on what I (and others) literally lived and can now share. It also offers resilience builders. I want to get these to as many caregivers as possible. I’ve made my tools and workbooks available to download for free from thesuddencaregiver.com, along with a page that offers resources.
Q: What do you do when you are not writing? 
A: When I’m not writing, really, I’m coaching full time. I’m an executive coach and I run my own consulting and coaching firm, Tangible Group, which I started in 2002 on the heels of 9/11. On that day, I decided that if this was the end of the world as we knew it, my job at the time – Vice President of Worldwide Marketing for a venture capital firm – was not the job I wanted to be doing. I wanted to be more “of service.” I quit my job, enrolled in the best coaching program in the country (The Hudson Institute of Coaching), got certified, and began my second career as an executive coach. I’ve never looked back. I liked marketing. I love coaching. Nearly twenty years down the road, I have a great complement of clients and the experience that resonates with them.
I also try to work-out as much as my schedule allows. I used to be a runner and loved to run distances. Lately, I’ve had a few injuries that have slowed me down, but I miss it. During the year after Joel died, I was aware that I had let my fitness regimen slide, so I sat down and calculated how much I was paying in annual fees to my local gym, which I was no longer using. I canceled my gym membership and used that money to buy a Peloton bike. It is every bit the game-changer its fans say it is for many reasons, but the reason it pulls me in is the sense of belonging you have, of being part of a positive and empowering Peloton community.
In addition, I do a fair amount of designing and redesigning the rooms in my home. I recently renovated all my bathrooms, which was quite a challenge during Covid. Joel and I moved houses a lot during the twenty years we were together, and, though I’m untrained, I have an eye for color and for what makes a space appealing and inviting. (I think my friends would also say that about me.)
Finally, I am so blessed to be able to share this part of my story: I’m happily newly remarried and I love the time John and I spend together. We met randomly in Gettysburg, of all places, a couple of years ago and became instant best friends. I was halfway through writing the book at the time and John has been amazingly supportive. We love each other’s families and cheer for each other’s football teams and toast each other’s successes. We share books and music and the Peloton. One day, after Covid, we’ll travel again.
Q: What gave you the idea (inspiration) for this book?
A: Research that I found early on in my caregiving circumstance helped me shape the structure of the book. First, I began to uncover reports that caregiving takes place in phases over time. It seems obvious that since a patient moves chronologically through their disease, their caregiver will as well. But I remember feeling relieved when I read it. I created the C-A-R-E (crisis, as normal as possible, resolution and evolution) Roadmap based on this idea.
In addition, the more I read about treating cancer, the more I wanted Joel’s doctors to tell me what else I could do. For example, I kept asking about alternative therapies like nutrition and acupuncture. Their responses were kind but noncommittal, sort of, “Well, if you think you’d like to try that…” I had a thousand questions and I emailed them constantly until I had an a-ha moment that I was asking questions that fell out of the range of their role in all of this and they were too polite to say so. I realized it was up to ME to figure out what actions to take when. That’s when I created the PRISM portion of the Roadmap – a sort of checklist of what practical, relational, integrative, social support and mindful actions to take as I moved from phase to phase.
Finally, I spent a lot of time in the presence of caregivers, who, like me, were populating the same waiting rooms I was during the treatment, imaging, and hospital stays of our care-receivers. I wanted to share with them what I was finding out about caregiving and resilience, to change their story, alleviate their stress, and help them find their smiles.
Q: What were some of the challenges you faced in writing your non-fiction books?
A: I kept a journal over my 18 months of caregiving, from diagnosis to Joel’s death. When the funeral was over, the demands of caregiving simply stopped, and an echoing silence returned to our big empty home. I took my laptop over to the kitchen counter with the dog gnawing a bone at my feet and the first thing I wrote was a chapter, now in the book, called “How We Got To Now.” It’s our story of how cancer scored a home invasion, suddenly bisecting our lives forevermore into “before cancer” and “after cancer.” I’m not sure I knew, writing that, that I was going to write a book. While I wanted to be a writer for as long as I could remember (I literally wrote a “romantic novel” when I was in second grade in my black and white composition book) I never really thought I’d do it.
That “who are you kidding?” voice in my head was pretty loud when I started writing. I had to remind myself that I had been an English major in college who had worked as a technical writer in the earliest days of my career. As a result, I had written, literally, dozens of technical documentation manuals – book after book after book – for which I was paid. Didn’t that make me, in fact, a professional writer? It did. I joined a weekly writer’s workshop run by a friend and colleague from Penn and I just kept writing.
When I was halfway through my book, another voice in my head surfaced, abetted by a literary agent whom I met with at a Harvard writer’s conference. I shared with her that I was writing a book on caregiving and she couldn’t have been more dismissive. She told me that I would never be published unless I had “platform” of ”100,000 followers on social media.” I was thoroughly demoralized and that got in the way of forward progress on the book. However, I did divide my time between writing the book and starting up The Sudden Caregiver web site and my blog, Stumbling Upon Grace. That accomplished, I was able to mentally thank that agent, send some loving kindness from the universe her way, and get on with the job of writing my book.
I also struggled with the book’s structure until I came up with how it’s currently organized. Often during that time, I would pretend that Joel was sitting across the room and I’d mentally ask him what he’d do if he were me. Somehow the answer “he” gave me was the one I needed in order to move forward.
Q: What’s the best advice you were given about writing?
A: Even though this is my first book, I’ve always been writing something – short stories, how-to marketing or leadership advice. Whenever I was stuck, Joel, would say to me, “Just write the first sentence.” This combines two of my favorite pieces of advice for writers: Ernest Hemingway’s, “All you have to do is write one true sentence. Write the truest sentence that you know.” And Annie Lamott’s, “bird by bird,” referring to a time when her young brother was struggling with a homework project about birds. In the title essay of her book, she writes, “Then my father sat down beside him, put his arm around my brother’s shoulder and said, ‘Bird by bird, buddy. Just take it bird by bird.’”
In writing, of course, regardless of how you proceed, what matters is that you proceed.
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