Can love survive the onslaught of chronic illness? Writer Sarah Cart shares how she became one of 39 million Americans taking care of an ailing loved one in ON MY WAY BACK TO YOU, One Couple’s Journey through Catastrophic Illness to Healing and Hope (Forefront Books; April 2, 2024). “My husband, Ben, just past his mid-fifties, was irrepressibly healthy and energetic until, suddenly, he wasn’t.”
In suspenseful and heart-rending detail, Cart recounts how, beginning with an incurable autoimmune disease, her husband developed one life-threatening condition after another. As each month passed, she felt her best friend, this brilliant businessman, successful entrepreneur, and energetically engaged and organized father to their four sons, slipping away, until eventually they received devastating news: Ben needed a heart transplant. But that was only the tip of the iceberg. Two weeks after the COVID-19 lockdown, they realized Ben’s body was shutting down and his only hope was to get on the list and get that transplant now—in the midst of a pandemic.
And that wasn’t even half of what was to come.
Thrust into the role of nurse and caregiver, Cart required a deep well of faith, grit, and grace as she confronted doubts, fears, endless setbacks, aggravations, and red tape while struggling to help Ben regain whatever he could of all that had been lost.
Cart reminds us that “there is certainly no promise that the health we enjoy this evening will be with us in the morning” and provides guidance for others in her shoes. Sooner or later, everyone will either become a caregiver or need one. To help when time comes, she shares the questions to ask, the notes to take, the signs to never overlook, and the self-care necessary for the caregiver.
ON MY WAY BACK TO YOU is more than a chronicle of Ben’s illness. It’s about love, resiliency, and the power of community: “When Ben was in the hospital, I felt all the people who’d ever loved him shining their light from the far reaches of the universe each time I begged them to do so.” It’s a roadmap through some of life’s greatest challenges and the journey of two people who used the power of love, determination, and endless patience to find their way back to each other.
I had a chance to learn more in this interview.
Why did you write this book?
Writing On My Way Back to You was a way to process what my husband, Ben, and I went through as his incurable autoimmune disease went totally out of control and nearly killed him. It’s a life and death love story – everybody could see that Ben was dying and I found myself on a really steep learning curve as a caregiver. It was terrifyingly intense, but then, miraculously in the midst of COVID, we got an unexpected gift that enabled our happy ending.
Why is it helpful for people to read stories about others who have been the caregiver for a loved one?
Life changes dramatically when something goes horribly wrong with the health of one partner and the other partner unexpectedly becomes the caregiver. The reality is, to paraphrase First Lady Rosalyn Carter, there are four kinds of people in the world: those who’ve been caregivers, those who are caregivers, those who will be caregivers … and those who need a caregiver … but as a society, we either gloss over that or rarely talk about it.
Once you’re aware of it, however, you are better equipped to support others who are in the thick of it, or to keep your own strength up when faced with the challenge yourself.
How can caregivers find support when they need it?
Don’t hesitate to ask for help when you need it, not just of friends and family, but also of the professionals involved in the patient’s case – they can point you toward resources you might not find otherwise, or at least not easily. Keep in mind that specific requests are wonderfully useful to those who ask what they can do for you.
Be cautiously open about your vulnerability, and gracious and accepting of people’s attempts to reach out. There can be awkward moments when people don’t know what to say or do; appreciate that they’re trying their best to be supportive.
Why is it important to build skills like hope and resilience?
As I say in the Preface to On My Way Back to You, “it’s one thing to know objectively that there are no guarantees in this world; it’s quite another to be challenged by that reality…. {There] is certainly no promise that the health we enjoy this evening will be with us in the morning.”
To that end, it is an invaluable gift to oneself to develop some sort of faith practice – think of it as “strength training.” It doesn’t have to be a church or a synagogue or a temple – it can be yoga or meditation or even breathing exercises – something through which you find blessings and grace and grit, because it is inevitable that at some point in your life, in the thick of a battle, you’re going to need somewhere to plant your feet so you can stand strong.
SARAH CART was raised and educated in New York and New England, and wrote for multiple local publications while she and her husband, Ben, raised four sons in northeastern Ohio. Upon becoming empty nesters, the two moved to the Florida Keys, but they returned every summer to the Pennsylvania Poconos, where each had lifelong family connections. Then came COVID-19. The pandemic, combined with Ben’s health issues, necessitated their sheltering in place in Florida for the entirety of 2020. In the wake of Ben’s undergoing miraculous lifesaving measures, they have been afforded the unanticipated gift of a future and, more than ever before, relish time spent with family and friends.
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