If facing a life-threatening illness weren’t frightening enough at any time of the year, imagine it over the holidays. The pain, isolation, and loneliness faced by patients and their caregivers are exacerbated when the rest of the world is celebrating or traveling with family and friends.
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“Paralysis” is the word Sophia Antoine uses to describe her Christmas last year, as she sat alone in a post-surgery recovery room. Her husband, Bradley, had received a kidney transplant on Dec. 10, 2015, but was rushed back into surgery two weeks later with a ruptured bladder.
“For him to make it out of the first surgery only to go back into another one, made me sick with worry,” the life coach from Ft. Lauderdale, Florida, told LifeZette. “They had to reopen the same site in order to repair the bladder. We were both afraid the kidney would react badly to the second surgery.”
As she watched over her husband, their three children — ages 21, 16, and 13 — were at home alone. She later learned a neighbor invited them over for dinner on Christmas. Meanwhile, she didn’t leave her husband’s bedside for days; he was heavily medicated and struggling to survive.
“Friends and family shied away from us. They didn’t know what to do.”
“I felt as though I failed them by not being able to have the whole family together,” she said. “We missed my daughter’s 17th birthday, too.”
Their children accepted the circumstances and understood the seriousness. Their dad had managed End Stage Renal Disease (ESRD) for several years with medication, but by 2010, dialysis was required. At that point, he waited more than five years for a kidney donor. During that time, the couple saw several friends they’d made during dialysis treatment die in surgery after waiting for transplants.
Still, nothing quite prepared Sophia Antoine for her lonely experience that Christmas. A friend sat with her for a few hours the night of her husband’s surgery, but as the holiday neared she was alone. Everyone she knew had plans with their families. She also felt the discomfort of those who tried to comfort her.
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“The entire time he was ill, we handled it ourselves,” she said. “Friends and family shied away from us. They didn’t know what to do. They stopped coming around. They didn’t want to see him ‘like that.’ So we learned to depend only on each other.”
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For Peter Rosenberger, who hosts a radio show called Caregivers with Hope in Nashville, Tennessee, a holiday away from a hospital is a rare occurrence.
Since a horrific 1983 car accident, his wife, Gracie, has endured 78 operations, including the amputation of both legs — and treatment by more than 80 physicians in 12 hospitals. Her ongoing care has created more than $10 million in medical bills and the pair have spent birthdays, anniversaries, Thanksgivings, and Christmas holidays in the hospital.
They have found a deeper sense of poignancy and reflection, he said, within the dreary and depressing walls of a hospital room.
“We’ve discovered that, if allowed, moments in the hospital during what would normally be festive and heartwarming times can unfold to times of great tenderness,” he told LifeZette. “It leads to considering priorities and the truly important things in life. Those times serve as opportunities to say things that should be said, and love from a deeper place in the heart.”
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He said a friend once told him, “When in the belly of the beast … be the archeologist.”
“Look for something to learn while in a dire circumstance, and ask, ‘Can I grow as a person here?’ The goal is not to feel better about it. We will never feel better about the painful and heartbreaking things. But we can be better as we deal with them. That’s a good Christmas present to ourselves.”
A closer bond and perspective on what’s truly important were gifts to Antoine, too.
“We are closer than we were prior to the transplant,” she said, a year after her experience. “It bonded us. Time is most important now. We never know when our last moment could be. We do our best to resolve quarrels quickly and get back to loving each other.”
Pat Barone, MCC, is a professional credentialed coach and author of the Own Every Bite! bodycentric re-education program for mindful and intuitive eating, who helps clients heal food addictions.
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