Crisis and Transformation
"the nowhere plan" by Julie Liger-Belair / julieligerbelair.com
Suzanne Mariott’s beautiful memoir on caregiving, published this month, began taking shape years ago with conversations at a S+H writer’s workshop.
He couldn’t get into his truck.
This is how it started: Michael couldn’t climb into the cab of his eighteen-wheeler because his arms and legs wouldn’t work.
It doesn’t make sense. This is supposed to be the day when the exhaustion finally lifts; after a year of working nights, he’s finally back on the day shift. Now he’s telling me he said no to an ambulance (an ambulance?) and somehow managed to drive home in our Honda to call me instead.
My hands tighten on the phone as I struggle to take in his words. Has he had a stroke? A heart attack? Did he fall?
“Call the clinic and try to get an appointment right away with Dr. Roberts.” His voice is strained.
Suddenly I have to be with him, not sitting here making phone calls. “I’m on my way home right now,” I tell him. There’s a pause. Then he tells me to make the call first. He will lie down and see if that helps.
Somehow my fingers punch the buttons on the phone. Someone answers and switches me to the emergency line. “How may I help you?” The nurse’s voice is cheerful.
“Something has happened to my husband—I don’t know what. He’s a truck driver, and he couldn’t get up into his truck.”
“Is he conscious?”
“Yes, he called me.”
I quickly give her Michael’s medical record number.
“You shouldn’t have been put through to this line. It’s only for life-and-death situations. Please hold.”
My hands are starting to sweat, and I feel as if I’m suffocating. Finally, she returns. “His doctor isn’t seeing patients today. Michael’s symptoms might indicate a stroke. You should take him directly to the emergency room.”
I dash out of the building, and when I unlock my car, the alarm goes off—even though I hadn’t set it. I reach in, and, desperate to make the shrieking stop, flip the switch back and forth. A coworker comes out to help but has no idea what to do. We look in the trunk. Nothing. I open the hood and see a horn-shaped object on the left. On impulse I pull a red wire, and the ear-piercing noise stops. I think of the proverbial grandfather’s clock that “stopped short, never to go again, when the old man died.”
At last I’m on the freeway, but the traffic is crawling; every taillight in front of me glares red. Tense and impatient, I’m right on the bumper of the car ahead. I eye the carpool lane; I check the clock. It’s only 20 minutes into the lane-restriction time. I pull over, relieved to be getting closer and closer to home.
Suddenly I see a California Highway Patrol car ahead on the left shoulder. Shit! There’s one on the right shoulder too. Fighting back tears, I switch lanes. Almost immediately, one of them appears in my rearview mirror, lights flashing, and I pull over.
When the officer reaches the window on the passenger side of my car, I tell him I’m a teacher and my husband is a truck driver and he has just called me at work to tell me he has collapsed on the job. My mind, trying desperately to forge a connection, figures if he knows I’m a teacher, he will believe me—and, after all, truckers and CHP officers share the same world.
He asks where my husband is now.
“He’s at home, and I’m trying to get to him as soon as I can.” I gaze up through my tears, silently pleading for help.
Unmoved, the officer asks to see my driver’s license and registration and takes them back to his car. Staring into the rearview mirror in disbelief, I watch him write a ticket. For a second, I had fantasized he would be my knight in shining armor—maybe even an escort home.
“I know you’re in a hurry to get home,” he tells me as he hands me the ticket. “I wrote you a citation,” he adds, as if I don’t know what he’s handing me. I take it and my license and registration without comment. Following his instructions to merge carefully, I get back on the freeway. Now—insult added to injury—I feel abandoned as well as panicked.
I’m still only halfway home, and the gray concrete of Interstate 880 and its looming sound walls make me feel trapped. Then my exit comes up, and the brighter colors of the barrio let me know I’m only 15 minutes away. I continue on the main surface road through Hayward and finally reach Castro Valley, the middle-class suburb where we live—and where my husband is waiting.
My anxiety builds as I’m stopped by the last traffic light. I know Michael would never have called me at work unless it was a dire emergency; he’s the type of man who rarely asks for help, proud that he can get the job done himself—meet the bell, he says.
The light finally turns green, and I turn off the crowded street, bouncing the car too fast over the too-deep depression in the road that always tells me I’m almost home. As I pull into the driveway, the house looks just like it always does—no sign that a crisis is unfolding inside.
I don’t know whether I’ll find Michael passed out on the floor or miraculously recovered, but I fear the worst as I run up the steps from the garage to the living room. Yet there he is, sitting quietly in his chair; I see he has gotten my father’s cane to help him balance. I rush to his side and help him up. I’m desperate to know what happened, but I can see from the grim look on his face that he needs to concentrate just to get out of the chair. This is no time for questions. We move awkwardly down the steps to the garage and get into the car. As we race to the hospital, he tells me how hot it was at work, and that as soon as he put one foot and arm up to climb inside the cab, he knew he wasn’t going to make it. No matter how hard he tried, he just couldn’t do it.
In the emergency room, the admitting nurse asks Michael when he started using a cane.
“Today.”
The nurse pauses to look at him before continuing with his questions. When he’s finished, we take our places in the waiting room, where Michael manages to keep his spirits up, joking about inane fantasy creatures on the TV. We exchange a complicit smile, glad for some comic relief.
Soon we’re ushered into an exam room, and Michael lies down on the table. It’s not long enough for his six-foot, five-inch frame, and his feet stick out over the end. A doctor enters and asks more questions, then tests Michael’s reflexes. When a neurologist joins us, the seriousness of the situation starts to hit me. Something must be very wrong if a specialist is about to be dealt. Suddenly he’s ready for the worst. But am I? What in God’s name is going to happen?
The first doctor comes back in and says he has arranged for us to see our primary care physician, Dr. Roberts, the following afternoon. He tells us the situation is serious. I think he wants to frighten us so we will be sure to keep the appointment.
“This is definitely a neurological problem,” he adds. “At least you haven’t hurt yourself yet.”
In the days to come, we will hear this phrase or another—“At least you haven’t fallen down yet”—many times, and we’ll come to understand just how much Michael’s balance is becoming impaired. But right now, we wonder why he’s telling us this. We want to know exactly what he means, but we don’t risk asking; instead, we just nod. More bad news can wait; we’ve had all we can handle today.
I bring the car around, and Michael slowly gets in. We’re quiet on the drive back. Both of us are tired and, I think, more than a little in shock. I make some tea when we get home, and we sit in the living room and try to make sense of what has just happened.
As we talk, it becomes clear we are facing a problem that isn’t really new; it’s been coming on for years. Several summers ago, we vacationed in the Northwest. On one of the islands off the coast of Washington, we went for a hike, during which Michael found the perfect branch to use for a walking stick. During the next week, he collected shells and bought rawhide and beads to decorate it. On Victoria Island, he commissioned a woman at the Native American Crafts Fair to make a deerskin cap for the top of the stick, and she attached the shells and beads on rawhide strings. We thought of it as a crafts project, but that concealed the stick’s real purpose, one we weren’t willing to admit: Michael was losing his ability to walk and to keep his balance.
There were other signs we ignored or greeted with denial. Michael had always been the one in the lead on our hikes, often turning around to urge me on or retracing his steps to help me over rocks on the trail. Now, rather than Michael, it was I who began taking the lead. I remember feeling increasing concern as I noticed his left leg beginning to drag shortly into a walk. I noticed, too, he began to turn his left foot out to compensate for its growing weakness.
“You’re getting stronger,” he would say as he lagged behind, attributing the change to me and not himself.
He also began to do less strenuous work around the house. The last time we gardened together, I found myself getting annoyed. I was doing all the work while he sat in a chair and watched, only doing a little raking for a few minutes. This was the same man who, bare-chested and glistening with sweat, would work for hours without a break, digging garden plots or laying winding stone paths.
He made excuses such as, “I’m tired because I work nights,” or, “My leg drags because of the way I sit in the truck.” And that was that. Michael was never one to go to doctors; he decided what was so—about himself or anyone else—and his opinions could not be changed by me, by others, or even, sometimes, by the facts. His pronouncements became a protective blanket under which he hid from the realities he’d rather not face.
This time, however, is different. Now there are doctors involved. We are finally up against it. Our uncharted journey has begun.
25 Years of Total Aliveness
[A longtime subscriber writes] I hope you will remember me from the Yucatan writing workshop you led in 2007. What a wonderful time that was! I will always remember with fondness and nostalgia the lake of seven colors—Lake Bacalar—and being part of such a supportive group of aspiring journalists… As you may remember from our conversations at the workshop, my husband, Michael, died in 2006. My memoir, Watching for Dragonflies: A Caregiver’s Transformative Journey [published this month], is about my spiritual and psychological growth during the 10 years Michael suffered from multiple sclerosis and I was his caregiver. I believe my story will bring comfort and inspiration to other caregivers and to anyone who has experienced grief and loss.
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