STOP TRYING TO BE PRACTICAL
Barbara Kivowitz, 56, who blogs about couples and chronic illness at insicknessinhealth.blogspot.com, says that she felt “kicked out of life” 10 years ago when she developed a neuropathic pain disorder that, in her words, left her “curled into a fetal position and dripping with pain and anxiety for the better part of a year.” Her husband, Richard Weissberg, 59, took over the household tasks and dealt with the insurance. “He was always there for me,” she says. “If I needed him to be quiet, he would be quiet; if I needed him to sit with me, he would.” Still, even in this best-case scenario, there were relationship issues. While Barbara is intuitive, her husband is analytical. This meant that when tough decisions had to be made about her treatment, Richard, the engineer, would take a cool-eyed problem-solving approach. “At times I felt stranded on my island of misery while he ran through all the statistics and probabilities of this treatment and that,” she says.
Deborah Ross says that after years of helping couples who face chronic illness, she has seen this happen over and over. At times like these, when men feel inadequate, “they tend not to talk about their feelings,” she explains. Instead, they try to fix the situation with practical steps: filling out the insurance papers, putting a handrail in the shower or going to work and making money. Ross recalls one male client who told her that he tried to be there for his wife but that she complained he’d abandoned her emotionally. He then explained to Ross that, as the breadwinner, he defined “being there” as focusing on his work and keeping their health insurance. He asked Ross, “How much of a physical and emotional presence can I be for her and yet still keep a roof over our heads and make sure she has the insurance she needs—both of which require my keeping my job? Why can’t those acts be seen as just as loving as holding her hand?”
But “doing for” and “being there” are not interchangeable, Barbara says. “Pain is a harsh driver. I no longer had any bandwidth for conversations or efforts at support that weren’t helpful to me. What I really needed was simple comfort.” As doctors struggled to figure out why her neurological system was sending pain signals to the muscles throughout her abdomen, she became very pessimistic that she would ever feel better. She told Richard, “Sometimes I need you not to problem-solve for me, just comfort and reassure me. Hold the hope for me that it’s going to be all right.” There were times, she says, when “I had to give him the script and tell him exactly what I needed to hear.” After a while, Richard learned to ask, “Do you need problem-solving now, or do you need me to hold the hope?” And Barbara could tell him whether she needed him to make three phone calls—or just hold her head in his lap.
When a woman in midlife falls ill, it’s often a chance for her husband “to go higher on the sensitivity scale,” as Barbara puts it, and for many husbands, it’s their first real foray into the trenches of caregiving. When it’s the husband who faces a life-altering illness, however, a woman faces different challenges. Many wives have long been the caregiver and organizer and chief bottle washer for the family—husband as well as children. By mid-life, these women are often salivating for their own space and time, and for them, a husband’s sudden illness promises to become another never-ending series of tasks.
Deborah Ross’s husband, Chuck, 59, had been sick for some time, experiencing partial seizures, migraines and sudden loss of word recall. Then, on an airplane, he had a generalized seizure so severe that the pilot turned the plane around and returned to the nearest airport. Soon after, Chuck was diagnosed with epilepsy.