When my husband was diagnosed with leukemia in 2007, friends and family rushed in with good intentions. To me, they offered eyes crinkled with concern and murmurs of, “I can’t imagine.” To Joe, they offered words of encouragement. “You’re in such good shape,” they’d say. Then, realizing how absurd those words sounded, they'd quickly add: “Well, you know what I mean. You’re strong. You’re athletic. You’ll beat this.”
To Joe, such pep talks carried a very different message: “You’re going to die.” So when he entered the hospital to begin treatment, he turned off his cell phone and unplugged the room’s landline, and that’s how they remained over the next six months as he withstood four rounds of chemo, then a stem cell transplant. I understood. “Focus on building your strength and getting better,” I told him. “I’ll take care of everything else.”
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I did not expect this to be easy. I had a day job; we had a daughter; there was a home and bills that required attention. In addition, I now had to manage Joe’s email, medical bills, friends and relatives. Moreover, I wanted to be with him at the hospital at least eight hours a day, both to break up the monotony for Joe and to keep a close eye on his mood, health and needs.
None of that, however, proved as challenging as navigating the well-meaning concern that threatened to smother me. With every sympathetic look, every compassionate hug, every expression of consolation, the people in my life unwittingly reinforced the obvious: I was at risk of losing my beloved husband. Frankly, I didn’t need the reminder.
Worse still, I felt a (perhaps bizarre) responsibility to ease their concern. But I was already weighed down with worry. Having to convince others that Joe and I would be fine was just plain exhausting.
To Help, Share Your News
By the time Joe began treatment, four days after his diagnosis, I was already backing away from the well-intended concern. It wasn’t just that people’s questions were repetitive and their upset imposed a weight I found difficult to bear. More concerning, it drained the energy I needed to carry out what I regarded as my main job: propping up Joe’s spirits.
Because the chemo for leukemia destroys the immune system, I was the only non-medical visitor allowed to enter his room. If I didn’t bring optimism, laughter and news of the world into his room, then what would distract him from his physical and emotional pain, let alone the sheer monotony of hospital life?
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When friends and neighbors, colleagues and even strangers would ask, “What can I do?” (and ask they did, over and over), I always offered the same response: “Send Joe an email. Tell him what you’re up to.” That got a wonderful response. Each morning I’d hand Joe printouts of the latest emails. For the next half hour, I’d feel his mood lift as he read the messages of support and love, often rich with remembrances of specific acts of kindness Joe had performed on their behalf. Pure gold.
Distraction As A Godsend
For my closest friends, I had a different request. “Go for a walk with me. But no questions about Joe. I want to hear about you.” Initially, my friends didn’t believe that I meant it. Joe was sick! Jill might lose her husband! Their daughter, Becky, might lose her father! To them, it was inconceivable that I could think about or want to talk about anything but Joe’s condition. They were right about that first part, but wrong about the second. I really did want to hear about their lives.
Here’s why. The worrying? That part I could do all on my own. But if I listened closely enough to what friends were sharing about their lives, I was able to set aside thoughts of Joe for a few minutes and enter back into the multi-dimensional world where people juggled jobs, husbands and children; discussed books, politics and writing projects; savored music, theater and travel.
For those few minutes, I slipped the constraints of being the wife of a very sick man, and reconnected with the Jill who was also a mom, a writer, a reader, a newshound, an athlete. I smiled; I laughed. Though the respite never lasted long, it was always renewing to break free of the bonds of worry. My mood would lift, replenishing the reserves of energy I needed for my daily visits with Joe.
Over the next two and a half years, as Joe withstood treatment and then setbacks, I leaned on the companionship of the few people who understood. Their conversation and laughter reminded me that there was a world beyond the hospital room, one that I would someday rejoin.
During those years, I also continued to struggle with the tired cultural script that came at me from all directions, persistently reinforcing my worry. “How’s Joe?” townspeople would ask in the aisles of the supermarket. “How’s Becky doing?” fellow parents would ask at school events. “How are you?” colleagues would ask in corridors, in elevators — even in the ladies’ room.
Then, in 2009, Joe died. The furrows in people’s eyebrows deepened. Their touches lingered longer. The script grew more insistent. Stunned and bereaved, I tried to draw comfort from the sympathy and support, and see past the obvious pity. But within weeks, all that well-intended attention began to feel smothering. I wanted out. This wasn’t an attempt to evade or deny my grief. (As if!) But I was beginning to realize that soaking in other people’s reminders of my anguish was not going to help me tolerate my pain.
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Smiling And Laughing Provide Respite
Once again, I pushed the conversation outward and away from me. “Tell me about you,” I said over and over. Given a compliant companion and a concerted effort on my part, I was sometimes able to move aside from my anguish and connect for a few minutes with somebody else’s life, concerns and challenges. In return, I often heard the refrain, “You’re amazing.” For me, such pep talks carried a very different message: “There’s something wrong with your grief.”
Six years later, I know there was nothing wrong with my grief. Rather, I was what modern bereavement researchers call “resilient,” a term that refers to those people — the majority of mourners, as it happens — who experience their grief in waves. For such people, feelings of sadness oscillate with feelings of pleasure and enjoyment throughout the day. Research indicates that opportunities to smile and laugh are particularly key to providing the bereft with respite from their pain.
In my experience, the same holds true for caregivers. That’s worth keeping in mind the next time you reach out to someone grappling with a loved one’s illness. All of us come armed with good intentions. But those who can remain mindful of the whole person, rather than seeing only their worry, stand a better shot of providing support that truly helps.
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