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U of M Alumni Association: The impolite truth

A personal essay on responding to questions about a husband’s limited recovery from a massive stroke.FROM MINNESOTA MAGAZINE, U OF M ALUMNI ASSOCIATION


After awhile, you get tired of answering the same question: How is Rob doing? Because the answer isn’t heartening and will probably never lend itself to a Reader’s Digest story of triumph over adversity. Because the answer doesn’t change much from week to week, and I can see people’s faces drop when I respond honestly. Because a lot of people who suffer a massive stroke never do completely recover. And my husband is one of them.

Just two years ago, Rob was a successful residential architect, a writer on design and development issues, an energetic, intelligent man with many interests. Only 45, he’d owned his own business for a decade and had a perennial waiting list of would-be clients. Committed to the city he loved, he had written plan books for updating bungalows, ranch houses, and Cape Cods so that people would stay in Minneapolis instead of fleeing to the suburbs. He’d designed townhouses, lake cabins, even the Star Tribune booth at the Minnesota State Fair.

Rob was an accomplished amateur photographer and had begun work on a cemetery photo project. Kayaking was a new interest, and Rob had recently begun setting aside money for the kayak of his dreams. He loved fatherhood and was teaching our daughters archery, camping skills, and photography, as well as serving as a chaperone on third-grade swim outings and overnight trips. He’d always had more ideas, more passions, and more commitments than he had time. His brain raced, and his body struggled to keep up.

And then one day it didn’t. On that hot July day, as he cared for our two daughters while I drove home from an out-of-town trip, a blood clot shot up to the left side of his brain and brought him down on the bathroom floor. Our 6- and 10-year-old girls, confused by the sight of their father seemingly asleep, watched him fretfully.

When I found him three hours later, he was lying on his side, unresponsive, fists clenched. By the time the ambulance arrived, the clot had done its work.

The brain’s left side controls the verbal centers—speaking, reading, and comprehending. The left brain also contains the executive function, the multitasking, organizing piece so vital to being a functioning adult in today’s complex world. By day two, the doctors were asking about his living will and preparing me for the worst.

When a health crisis like this hits, the family first handles a series of urgent problems. Would he live and would surgery be performed should his brain swell? Where would he go for rehab? Could he ever learn to walk again or to dress and wash himself? Task by task, challenge by challenge, Rob worked hard and I supported him through it. Therapy? Check. Disability insurance? Check. Accessible shower? Check. CaringBridge Web site to keep friends and family informed? Check. The adrenaline of crisis mode carried me through the three months that Rob was hospitalized and in rehabilitation facilities, and people marveled at my coping skills.

During those months, cards flowed in, meals appeared, rides were offered. People rallied round and applauded each new development—first sentence, first solo shower, first walk around the lake. But then recovery slows down. And the months turn into a year. And the second year slowly moves on and still there is no movie-of-the-week climax. Nearly two years post-stroke, Rob continues to speak haltingly and to search for words. He doesn’t remember certain people, events, and places he once knew. He cannot talk about the coming presidential election, the rising tide of teardowns in the city’s lakes neighborhoods, or his daughters’ problems at school.

Rob cannot say what he wants for lunch if he is also washing the dishes. He cannot laugh about something a friend said because he can’t remember that friend, nor understand why that particular comment is funny. He can no longer work as an architect because he can’t talk on the phone, juggle multiple projects, or remember how to use the design software.

“My husband used to be an architect,” I told someone the other day and felt so unutterably sad I could barely finish the sentence. Rob decided to become an architect when he was 7 years old and he never once strayed from that desire. He’d always planned to continue doing the work he loved into his 90s, pointing to role models like Frank Lloyd Wright and Philip Johnson.

Now Rob’s identity is no longer tied up with his profession. And what I’ve come to understand is that permanently disabled is not the ending the world wants to hear. Well-meaning former colleagues offer tales of miraculous recoveries, of stroke survivors turned speaking-circuit authors. Friends, be they acquaintances or buddies of long standing, crave the Patricia Neal story, not the James Brady story.

Once the crisis is past, everyone expects—even needs—a happy ending. But all too often, as so many stroke survivors and their families know, there is no happy ending. The person is alive but utterly altered. Rob remains a hard worker, a gentle father, a neat freak. But the light that once shown from his eyes is gone, visible now only in photographs. His pleasures, once so various and numerous, are now simple: watching the cats sleep, seeing the girls play, eating a good meal.

The invitations are fewer and more tentative, the inquiries hopeful yet guarded. And my answers vary, depending on my mood and energy level. Usually I say Rob’s fine, getting better all the time, thanks. But occasionally, when I tire of the charade, I respond instead with the unvarnished truth: Rob has plateaued, he’s permanently disabled, he will never be the same person again.

And the alarmed faces quickly tell me I’ve gone too far, that it’s neither positive nor polite to state the bald truth. Yet the loneliness of not admitting our day-to-day reality becomes so burdensome that the real answer keeps leaking out, leaving
social awkwardness in its wake.

So, how is Rob? He’s a different man from the one you and I once knew. He’s trying hard to get better and to enjoy his life. He misses you, and he sees the world passing him by. He knows, as I do, that sometimes the ending you wish for is not the one you get.

Lynette Lamb, who received her M.A. from the University of Minnesota in 1984, is an editor at Macalester College in St. Paul. She and her husband, Robert Gerloff (B.Arch. ’86 from the U), live with their two daughters in South Minneapolis.