A celebrity obituary a couple days ago reminded me of an infamous remark once blurted out by Rob's favorite speech therapist: "I wish The Patricia Neal Story had never been filmed!"
This is a TV movie about the late actress, once married to author Roald Dahl, who is known for having come back 100 percent from a major left brain stroke. A few years after her early 1960s stroke, she was acting in movies and on stage again as if nothing had ever happened.
Rob's therapist, Don, who has spent decades working with stroke survivors suffering from aphasia, knows all too well how rare it is for this to happen. A couple years ago, when I'd gotten good and sick of everyone expecting Rob to follow suit, I wrote the essay posted below. Rob is somewhat better now, but the main sentiment holds true.
Wrong Answer
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 a Minnesota state fair booth.
He was an accomplished amateur photographer, and had begun work on a cemetery photo project. Kayaking was a new interest of Rob’s and he’d recently started setting aside money for the craft of his dreams. He loved fatherhood and was teaching the girls 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 refereed our two daughters’ squabbles 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 sleeping, watched him fretfully but made no calls. When I found him three hours later, he was laying 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 and reading, talking and comprehending. It also contains the executive function, the multi-tasking, 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 one 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 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 came in, 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.
He 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 his 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.
