Chapter 1 – Crisis

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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 tail- light 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 twenty 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 fifteen 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 hap- pened, 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 brought into the ER. Suddenly, I want to protect my husband and, moving closer, I take his hand. Michael looks up at me with concern in his eyes. Meeting his gaze, I feel my heart expand. It’s as if our fears are joined, and I can hold them both.

The doctors leave, and we wait. Someone has left a crumpled newspaper in the exam room; I pick it up and begin to read an article aloud to distract him. Instead it seems remote and meaningless. Discarding the paper, I give voice to what I know Michael must be feeling. “It’s strange, isn’t it?” I ask him. “You’re not in control. People tell you how it’s going to be.”

His response has a chilling effect on me. “I’ll take whatever they dish out,” he says, his face hardening as his body tenses to receive whatever blow 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.

Solace

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photo by Simon Migaj on Unsplash

These are times when much is taken away. As caregivers we are all too familiar with loss, and now is an especially difficult time. I’d like to share an essay written by the Irish-English poet, David Whyte, that speaks to loss and to solace.  

Solace is the art of asking the beautiful question, of ourselves, of our world or of one another, often in fiercely difficult and un-beautiful moments. Solace is what we must look for when the mind cannot bear the pain, the loss or the suffering that eventually touches every life and every endeavor; when longing does not come to fruition in a form we can recognize, when people we know and love disappear, when hope must take a different form than the one we have shaped for it.

Solace is the spacious, imaginative home we make where disappointment goes to be welcomed and rehabilitated. When life does not in any way add up, we must turn to the part of us that has never wanted a life of simple calculation. 

Solace is found in allowing the body’s innate foundational wisdom to come to the fore, a part of us that already knows it is mortal and must take its leave like everything else, and leads us, when the mind cannot bear what it is seeing or hearing, to the birdsong in the tree above our heads, even as we are being told of a death, each note an essence of morning and of mourning; of the current of a life moving on, but somehow, also, and most beautifully, carrying, bearing, and even celebrating the life we have just lost. – A life we could not see or appreciate until it was taken from us –

To be consoled is to be invited onto the terrible ground of beauty upon which our inevitable disappearance stands, to a voice that does not soothe falsely, but touches the epicenter of our pain or articulates the essence of our loss, and then emancipates us into the privilege of both life and death as an equal birthright.

Solace is not an evasion, nor a cure for our suffering, nor a made up state of mind. Solace is a direct seeing and participation; a celebration of the beautiful coming and going, appearance and disappearance of which we have always been a part. Solace is not meant to be an answer, but an invitation, through the door of pain and difficulty, to the depth of suffering and simultaneous beauty in the world that the strategic mind by itself cannot grasp nor make sense of. 

To look for solace is to learn to ask fiercer and more exquisitely pointed questions, questions that reshape our identities and our bodies and our relation to others. Standing in loss but not overwhelmed by it, we become useful and generous and compassionate and even more amusing companions for others. But solace also asks us very direct and forceful questions. Firstly, how will you bear the inevitable loss that will accompany you? And how will you endure it through the years? And above all, how will you shape a life equal to and as beautiful and as astonishing as a world that can birth you, bring you into the light and then just as you were beginning to understand it, take you away?

More from David Whyte can be found at https://www.davidwhyte.com.

Our Needs as Loved-One and Caregiver

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Abraham Maslow’s Hierarchy of Needs

I remember when my therapist reminded me that my husband was in survival. She was referring to the most basic of human needs as defined by Abraham Maslow in his Hierarchy of Needs. 

I had been complaining that my husband no longer seemed interested in the things that usually drew us together—like reading and discussing new books or exploring new concepts. Increasingly, I was feeling alone and disconnected from my husband. 

Abraham Maslow was an American psychologist who theorized that humans have five basic categories of needs: physiological, safety, love/belonging, esteem, and self-actualization. Though controversial, his elucidation of needs rings true in many ways and, as a caregiver, I found them helpful.

When my therapist spoke of my husband being in survival, she was referring to the basic physiological needs, such as breathing, food, water, sleep, sex and the maintenance of consistent levels of these essentials. Suffering from MS, my husband was not at all confident that these needs were or would be met. He could no longer work and was becoming increasingly dependent on me. Even sex was problematic.

Where once he had felt safe and secure, his second basic need—safety—was no longer assured. His body was changing, and his health was deteriorating. Working was out of the question now, and our financial resources were being stretched. He didn’t feel safe at all.

Though he felt my love and we had a strong sense of belonging together, his social connections were becoming increasingly limited as friends fell away and his mobility issues limited where he could go and what he could do. He no longer belonged to his work community and his involvement in the larger community was diminishing.

His self-esteem was on a downward trajectory. He was losing confidence in himself now that he could no longer work. This led to a lowering of self-respect, and he wondered if others respected him as much as they once had now that he was becoming “different.” 

In terms of self-actualization, it was becoming more and more difficult for him to accept the facts of his drastically changing situation. He wondered who he was now and who he would become. Fortunately, he nourished his creative side through drawing and painting in his journals and taking photographs that he enjoyed editing on his computer. Here he could be imaginative and spontaneous. This gave him relief from his worries and a growing avenue for self-actualization. Creativity was a wonderful coping strategy that helped him relieve stress and live in the moment. It was both satisfying and empowering.

Meeting these needs, as outlined by Maslow, is linked to our sense of well-being. When they are not met, our sense of well-being diminishes. Add this to the physical pain and limitations of disability, and it was no wonder that my husband and I were sometimes out of sync. 

My challenge was to continue nourishing my own self-esteem and growth in self-actualization while recognizing that often my husband would be preoccupied with much more basic needs. With this knowledge, I became more compassionate when he was anxious and moody, and I appreciated and encouraged his creative pursuits. I also found that being a caregiver helped me to meet my own higher needs as identified by Maslow. While my psysiological and safety needs were well enough met—or else I would not have been able to do all that I did for my husband—caring for him brought us closer together in love and belonging. As I grew more as a caregiver, I grew in confidence and achievement, and this increased my self-esteem. For me, caregiving became a new way of self-actualization as I became creative in my role as a caregiver, learning to solve new problems and accepting the facts as they emerged while finding ever new ways to live fully in the moment.

Caring for My Mother

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I’ve been writing about caring for my husband when he had multiple sclerosis, but I also cared for my mother during the last years of her life. It was a strange shift in rolls. As an adult child, I took it for granted that she could take care of herself; in fact, I never thought much about it. But as she aged and her medical problems grew, her need for care grew, too. As time went on, more and more, I was the one in charge. Eventually, I had to place her in a board-and-care home near me.

I often felt like an inept juggler as I tried to balance the demands of my job, my commitments to my husband, and the needs of my mother. My husband was well then, it was before he had MS, and I felt torn between doing what he wanted and doing what I felt I should be doing for my mother. I would have liked her to come live with us, but he didn’t want that. And to be honest, it wasn’t entirely what I wanted, either. His three daughters had just moved out and were on their own. We both wanted time for ourselves.

Even though I spent a good deal of time with my mother and watched over her needs, I still felt guilty. I felt selfish and guilty when I put my marriage first. She didn’t feel that way; she always told me how much she appreciated all I did for her and what a good daughter I was. But I knew I should do more, yet, somehow, I couldn’t. 

In truth, I handled all the logistics well, such as taking care of her finances and overseeing her medical needs. We spent time together and shared wonderful moments when we talked deeply about things important to her. Still, I wish I could have been more emotionally present those times I was preoccupied with my own problems. With a stressful job and sometimes-demanding husband, I sometimes lacked the empathy I wish I could have shown her. 

It’s a comfort to remember some words my cousin spoke to me when I was raising my three stepchildren and having a hard time: “Are you doing the best you can?” she asked. I replied that I was. “Well,” she said, “that’s all anyone can do.” Perhaps that applies to my care for my mother, too.