Facing the Struggle

Facing the Struggle, By Sarah A. Cart Author of “On My Way Back to You“ 

“Shun not the struggle: face it. ’Tis God’s gift.”

When I’m tired or down, I turn to that line from a poem by Maltbie Babcock, first heard at summer camp a couple generations ago. Although now I tend to think more in terms of the Universe rather than some almighty being, the line reminds me that the most fulfilling experiences of my life, the gifts, forced me to stretch, to step beyond my personal comfort zone, to face a challenge I wasn’t sure I could manage. Each experience terrified me at the start, each taught me lessons about myself and beyond. Some were successes, many were failures. But each success started with a stretch.

The biggest stretch (to date) has been my role as caregiver for my husband, Ben. He was diagnosed with an autoimmune disease seven years ago, and at the time, the two of us, both in our fifties, counted our blessings that it had been discovered early. 

While we were told the disease was incurable, and that it would be treated symptom by symptom, we were still in for a shock. Each month it seemed to find a new organ to attack, and sometimes we managed to stay on top of things, but other times we couldn’t. Separate diagnoses piled up under the autoimmune umbrella (scleroderma, GIRD, Raynaud’s, carpal tunnel, sudden hearing loss, etc., each rising and falling like the tides), and my role as caregiver grew until eventually I realized I was the one taking all the notes at doctors’ appointments, logging all the hours behind the wheel of the car, taking all the phone calls with medical personnel to schedule appointments and procedures. 

And then Ben went into congestive heart failure.

A pacemaker helped, but nine months later, we were told his only hope for survival was a heart transplant, but getting on any transplant center’s list is a long and complicated process of tests, evaluations, procedures, and interviews over the course of many months. Yet, coming to terms with Ben’s failing health felt in many ways like the natural order of things. We had watched multiple loved ones go through similar journeys: My father became my mother’s caregiver for the last three years of her life 30 years earlier; my sister had cared for her husband as cancer took him from her and their two young children; my brother’s wife and two children were by his side when he, too, died far too young. They had taught us how to say goodbye.

Which meant the only way forward was to tap into a deep well of faith, grit, and grace … to understand that on a level we may not comprehend, no matter how things progressed, “all shall be well, and all manner of thing shall be well.” 

As 2019 transitioned to 2020, whenever friends asked, “How’s Ben doing?” my answer was a variation on “When things are good, we can take them a day at a time. If they’re really good, we can take them a whole week at a time. Sometimes we just take things hour by hour.” Although no one said it out loud, anyone who looked at Ben could see that he was dying.

Then two weeks after the world shut down as the COVID-19 pandemic was declared, Ben’s kidneys shut down, too, and he landed in the ICU. We had not yet succeeded in getting him on the transplant list, but miraculously, a few weeks later Ben did get a heart because, in the midst of so much going wrong, he made it onto the list and then happened to be in the right place at the right time – in the spring of 2020, hospitals were averse to letting anyone into an OR for surgery unless they were known to be COVID-free; testing still took multiple days to produce results, thus the only patients going under the knife were either emergencies (car crash victims, gunshot wounds) or those COVID-free individuals who were so ill they were dying and already in the hospital.

Ben’s recovery from the heart transplant was complicated by multiple factors, not the least of which was, because the transplant took place on day 34 of the COVID pandemic, he was unable to have any visitors for more than 9 weeks. Then there was the broken hip discovered a week after he received the heart (the result of a middle-of-the-night fall shortly before being hospitalized), which meant that due to the excruciating pain, when he was finally “discharged to home,” he was in a wheelchair and dependent on opioids. After the hip was replaced 3 ½ months post-transplant, critically low hematocrit numbers briefly landed him back in the hospital. And with the new hip in place, he graduated to a walker, but he needed to be weaned off the painkillers, and then he had to learn to walk again.

Not to be ignored here, until Ben’s post-transplant arrival home, he’d had 24/7 care from a whole team of medical personnel, plus janitorial staff to clean up after him and nutritionists delivering three meals a day. Once he was home, we each had some serious adjusting to do as suddenly his 24/7 care was coming from me alone.

I found the spiritual strength for all this, from the years of Ben’s declining health through handling the COVID months we were apart, and then the full responsibility for his homecare, via multiple practices: journaling, walking, breathing exercises, and meditating.

Journaling was a means to relieve the stress. At the beginning of an entry, I’d unburden myself of the problem at hand, and hopefully, a few paragraphs later, end on a positive note. 

Walks enabled me to burn off nervous energy, listen to the birds, watch waves across the water, observe white clouds skitter across the sky as leaves moved in the breeze, and when I was lucky, gain perspective.

Those months when he was so sick in the hospital that I wasn’t sure I’d ever see him again, I’d breathe—in and out, in and out— as I closed my eyes at night and before opening them in the morning. Breathing in love, calm, grace, peace, courage, gratitude, patience, and more as deeply as possible; breathing out fear, terror, dread, panic, frustration, anger, exhaustion, anxiety, irritation . . . squeezing the last bit of air out of my lungs like water from a sponge so there’d be more room for the positivity of breathing in deeply again.

And in the isolation of COVID, I found strength in meditating on the power of hope and radiating confidence and strength. I envisioned the hospital in a cone of light descending from the broad Universe and called forth a multitude of angels, every friend and loved one we’d lost over the years—Ben’s father and grandparents and aunt, my mother and brother, my brother-in-law and stepbrother, a couple of Ben’s best friends from high school, and countless others. I imagined their energy as focused radiance and asked them to keep Ben, and his doctors and nurses, safe and strong, COVID- free, and ready for a miracle. It was empowering to feel all the people who’d ever loved Ben shining their light from the far reaches of the universe each time I begged them to do so. 

These practices were where I found blessings and grace and grit in the thick of the battle, where I planted my feet so I could stand strong. These days, I continue to journal, and to walk, and to engage in breathing exercises. I’m sorry to admit I am not disciplined about meditating, but I do pray to our angels in the Universe on a regular basis, to thank them for sustaining me, for sustaining us, through those most challenging days, and for the countless gifts that have come our way with Ben’s recovery; there is little to compare with being able to give thanks for the sound of my husband snoring in bed next to me.

Once Ben’s recovery was well underway, it was time to focus on some recovering of my own, as I felt I had some PTSD. The psychologist I spoke with agreed, noting, “You are the partner in need of repair and healing,” and advised, “Sleep. Eat right. Exercise when you can. Establish when and where you need to protect yourself.” He then suggested, “Try to greet the morning with optimistic anticipation, not frustration. Ask yourself, ‘What gives me pleasure?’ And seek avenues to make each day better.” 

Some things I believe I’ve always known, but now appreciate more deeply:

• Everyone is going through something. 
• Each day is a gift to be treasured (that sounds so cliché, but really, every sunrise is a miracle of its own – “rejoice and be glad in it”). 
• There is always, always something for which to be grateful. 
• Organ donation is an extraordinary gift. 

And finally:

Love bears all things, believes all things, hopes all things, endures all things. Love never ends.

—1 Corinthians 13:7–8 ESV

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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. Her memoir, “ON MY WAY BACK TO YOU, One Couple’s Journey through Catastrophic Illness to Healing and Hope”, released Spring of 2024.  For more information, please visit onmywaybacktoyou.com/