My ears are attuned to every little sound: the clicks of the break release handles on Dad’s downstairs walker; Mom’s syncopated shuffle; the single beep as the stair lift arrives at the end of the track, upstairs or down; cursing from the bathroom. This morning I awoke to the muscular sound of an industrial-strength vacuum in the master bedroom. Through the doorway I saw Dad sitting on the walker seat and pushing the carpet cleaner forward and back next to the bed. I did not ask, but I knew without asking. His weekday CNA Cecilia—faithful, pleasant, and kind—came shortly after and helped him shower. From my home office I could hear their one-way conversation: she said very little. “Do you know how old the earth is?” he asked her. “Four and a half billion years old!” He knows and loves the Bible and its God, but informed Cecilia that “God did not make the earth in six days.” Rather, He probably took billions of years to make our globe. Dad explained to her about the sun burning hydrogen in nuclear fusion, with enough hydrogen still to burn brightly for billions of years more. He told her that the only way we know how to use nuclear fusion reactions is with a hydrogen bomb, and referenced the atom bombs dropped on Japan. He expounded about ocean currents, and about the hydrologic cycle of evaporation and precipitation and the rivers of water vapor coursing through the skies, and about Argentina’s defiant propensity to default on its international debts, and about the formation of galaxies and stars. “I like to know things,” he summed up. Cecilia, an excellent listener, interposed an occasional affirming “really?” and “oh.” He told her about our family visiting an Indian tribe in Brazil in 1974, and how the tribal elders would not let us into their compound without being members of their tribe, and about how the tribal elders allowed us to become members of their tribe by following them on a course through the grounds and buildings, ending at a ceremonial tree, and about how we bought blow guns and bows and arrows from the indigenous women of the tribe. This is a true story. I know because I was ten and I was there. Dad’s stories sometimes jump from one unconnected subject to another, shifting like an old car with a worn out clutch. Dad lamented to Cecilia, “A few months ago I was a normal person. I could walk. I could do things.” That is not true. I know because I am 58 and I have been there with him, watching the insidiously steady downward degeneration culminating in painful undignified immobility and having to use the carpet cleaner in the mornings. He is not untruthful—he just forgets. And he cannot retrieve his books from his bookshelves or his checkbook from his desk or a glass of ice water, and has to ask Mom and me to fetch these and other things for him. He asked me to bring him Mom’s youthful portrait from his desk, placing it on the end table by his recliner, where he can see it all day as he reads. I remember seeing that portrait of Mom on his desk thirty years ago when I visited his New Brunswick office in the Johnson & Johnson tower. He has gazed at Mom’s youthful portrait for more than six decades, and he tells Mom everyday what a wonderful person she is, and that he loves her. And he steals hugs when she walks by, and she returns the hug and runs her fingers through his sparse wispy hair.
Hyrum called me from Brazil, where two weeks ago he began his two years of missionary service for his Church. He was tired but happy, overwhelmed but enthusiastic, intimidated but feeling the Spirit of God, not knowing the language but still communicating, exactly what a new missionary would expect to feel. I encouraged him to be patient and compassionate with himself, to not think about the long two years of days ahead, but about today, one intentional day at a time. The burly tatted barber gave him a nice haircut. And I talked with Brian in Tooele. Poor Lila has another cold, and Owen is already laughing. Avery’s business is looking up. Brian’s Fiverr clientele is growing—he raised his prices because he was too busy with too many clients, but they all requested him anyway. He and Avery are finding balance in the chaotic life of a young family. And I talked with John in Idaho. Their bathroom ceiling fell in while they were out of town. Luckily, the leak from their upstairs neighbors was gray water (washing machine) not black water (toilet). Their landlady put them in a hotel for a few nights, and hired a handyman to fix the ceiling and walls. I fasted a Sunday to seek God’s help in their search for employment after graduation. Henry is almost walking, and puckers and blows kisses. And I talked with Caleb and Edie in Panama, who arrived safety despite cancelled flights and chaotic connections. At church they rejoiced at seeing dear mission friends and converts. The hammocks by the mangrove lagoon were nice, too. Edie is a Marco Polo wiz. And I talked with Hannah over lunch at Costa Vida. This father is trying to find ways to connect with his teenage daughter. We are writing in the pages of a daddy-daughter journal, passing it back and forth, sharing our dreams and goals and interests. She drove herself to my office for the first time. And I talked with Laura in Chicago. I sent her pretty fabrics, and she is full of quilting ideas. Connor is studying furiously in medical school. William has four teeth and loves blackberries. And I talked with Dad and Mom. Dad’s CNAs help him bathe, dress, and get settled downstairs. He has been sending them home early, but paying full price, partly from magnanimity, partly from disliking pampering. Mom and I frequently do chores they could do, like vacuuming the floor of spilled food around his recliner. They are sweet to him; they are his friends; they listen patiently to his stories and laugh at his jokes and sympathize with his pains and indignities, but also need to work the time for which they are paid. He did not disagree. And I talked with Chip at church, who said he would stop by to see Dad, and did. He is a retired east coast cop who speaks his mind, and exclaimed, “Just put on a double diaper and come to church anyway!” He was only partly kidding. “We miss you.” People do miss Dad at church, and inquire after him. A few actually come over, walking the talk, practicing what they preach. Terry brought over a bag of cold apples for Dad to enjoy; peaches are not in season. In Patos de Minas, mangos are in season, and my missionary son’s church meetinghouse nurtures two enormous mango trees in the yard. He is loving both the mangos and the mission. He is feeling the truth of the Gospel message, sharing the good news of the restored Church. He is feeling the presence of God through His Spirit, and love for the people and the place. He says he is Brazilian at heart. A father could not wish for more for his son.
(Pictured above: Yours Truly with 6 of my 7 wonderful children, plus spouses (missing one), and my four beautiful grandchildren.)
Despite the first Sunday being our Church’s normal monthly fast day, I felt too excited to cook something pretty and delicious from my new cookbook to want to fast, and I had my heart set on crunchy French toast made from slices of brioche spread with Adam’s peanut butter and dipped in a mixture of eggs and cream and whole milk plain yogurt and dragged through crushed corn flakes and sliced almonds and browned on a griddle and topped with fresh cinnamon whipped cream. The image in my mind seemed almost its own religious experience, preferable by far to fasting. I set a loaded plate of fancy French toast and bacon before Dad, feeling pleased with myself, and loaded up my own plate of deliciousness. Dad offered two slices to Stacy, the CNA, who was not too proud to accept, and which I honestly was about to do, on my own, out of politeness. After eating (is the taste ever as good as the romantic anticipation?), I began to walk away to other labors that weighed on me, when Dad called after me to cook some bacon for Stacy. I found myself suddenly enraged, and turned back to the kitchen and tore the package from the fridge, spilling cold bacon on the bar. Mom saw my distress and coolly but immediately said, “I’ll do it.” I knew instantly something was off, because, as a rule, I do not experience rage, except perhaps over child abuse and domestic violence and human trafficking, and certainly not over something so trivial as toast and bacon. So, why the sudden rage? I knew this was my opportunity, before moving on, before making mistakes, to turn inward the bright lights of introspection and understand my distress, layered though it was sure to be. Clearly, I had been pandering for praise for my fancy crunchy French toast, as well as for my magnanimity in making and serving it. A little deeper, I saw that I already resented feeling like a servant, bustling dutifully about to meet each need, and I felt belittled at another’s apparent presumption that I had nothing to do but stand by to fulfill the next manifested need. And I had things to do, my things! Worst of all, I felt demeaned at being told to be a servant to a servant. Many layers, none flattering, each reproaching. And I thought of Jesus, the Son of God, a God himself, the Creator and Master of earth and sky and cosmic universe, who yet made himself the servant of all, who in symbol washed his followers’ feet, instructing me to do likewise. Dear Jesus, I turned my thoughts outward, upward, to the Divine Presence, please help me be more humble. Help me to not be too proud to give and to labor, for others. Stacy had mentioned how much her husband loves peanut butter and French toast, both, but it was too late for me to offer her a slice to take home to her husband: she was out the door before I finished figuring out my frustration, and I lost the chance. And by then the time had come for choir practice. Mom held tight to my arm as we walked slowly into the neighbor’s house for rehearsal. “It’s so nice to have a strong arm to lean on,” she said to me kindly. But I was not feeling strong of spirit or strong of character, even though Mom had seen my distress and also had seen past my selfish fit over bacon straight into my heart and felt quite convinced I was steady and firm and strong, and good, as I will aspire and work harder to be. Perhaps next fast day I will simply fast.
(Crunchy French Toast, from Tieghan Gerard‘s Half Baked Harvest cookbook Recipes from My Barn in the Mountains.)
(This chapter was to be posted on December 10 but I neglected to click the “publish” button! Hopefully, better late than never.)
When one counts one’s blessings, should the recounting of one’s afflictions come before or after? Or at all? I am certainly greatly blessed in having moved from my solitude to my parents’ home. Living the legacy of faithful family. Serving and contributing and giving care. Cooking and shopping and driving and repairing and cleaning up. The gratitude and love and support of one’s devoted parents. Reading dozens of books during my commute. But the coin’s obverse also reveals itself, sometimes painfully. My state-mandated divorce class emphasized how harmful is a parent’s geographic distance from a child. I have paid a price by living an hour away from my teenage daughter. We used to share an evening a week, and some weekends, cooking, baking, listening to music, playing games, sitting in the hot tub, doing crafts, conversing, dreaming. Now I am lucky to take her to lunch twice a month. She is 16. She just earned her driver license. She takes voice lessons and sings at church and in an audition choir. She feels so far away. In a similar vein, pursuing a romantic relationship has proven impractical what with the worries and fatigues of caregiving and homemaking. Though I have dated, the added stress of relationship building (and, more to the point, relationship failure) has heaped new heaviness to my burdens. My sisters tell me they love me and pray for me, that God is with me, but caution me to be aware of my limits and my needs, and to express them, so I can enjoy health and happiness, too. That is good counsel. One date said to me, There are lots of ways of caring for your parents without living with them. That seemed to cheapen the revelation that brought me here. That felt like questioning my intentions and deliberations and decisions. That belied and belittled the magnitude of my mission and the refining value of my consecration. Moving here was the right thing to do—even a providential revelational opportunity—but did come at a personal cost. Was that cost worth paying? My daughter Laura encouraged me to wrap myself in Psalm 23 as I experience this caregiving phase of life: The LORD is my shepherd. I shall not want. He restoreth my soul. He leadeth me in paths of righteousness for his name’s sake. There is no turning back. I am here to stay, come what may.
Mom has taken to riding the stair lift up and down the stairs, though Dad’s disability was the urgent impetus for installing the lift. She does suffer with arthritic knees, and the 21 stairs have become increasingly difficult to take on. And even if her need is not yet equally acute, the lift is easy and pain-free and even fun, as much of an adventure as she cares for at 83. Dad’s wheelchair routine, on the other hand, is anything but easy. A quick trip to the dentist for a checkup and cleaning involves dozens of indispensable sequential steps, such as, transfer him from his recliner to his wheelchair; swing the foot support “arms” into forward position, and lower the foot rests; raise his legs by pulling on the tongues of his shoes; roll him in his chair out the front door, which Mom opens ahead of us and closes and locks behind us; roll down the ramps—with new confidence on the new grip-paint surface—open the front passenger door of the Mighty V8, lower his legs by the same shoe tongues, raise the foot rests, and swing out and remove the foot support arms; position and lock the chair as close to the front seat as possible, and lift by the armpits as he pulls himself mostly upright; lift his left foot into the car from behind his left knee, and push his hips with my available knee as he heaves against the handles to slide into the seat; fold and lift the heavy chair and stow in the back of the suburban. Then reverse the whole process at the dentist office. Then do it all again on the return trip, except that I must gain momentum to make it up the ramp, which frightens Dad in his powerlessness as I push. Then do it all again for the eye doctor, the heart doctor, the skin doctor, the foot doctor, the diabetes doctor, the divers tests…. After depositing him again in his recliner at home, I retreated to the kitchen, and soon heard him call, “Rog, are you there?” He wanted to tell me something from the day’s New York Times. If I am in the same room while he is reading the newspaper, he delivers to me a verbal new reel, like today: S. Army admits botched drone strike that killed civilians in Kabul…Nineteen protesters sentenced to death in Tehran…Six-year-old brings gun to school, shoots and kills teacher…Draft pick scores 71 points in first game with new team. “I’m here,” I reported, but thought with condemning self-examination: Are you really there, Roger? I cook their meals, make home repairs, shop for the groceries, landscape the yards, place the decorations, run the errands, fix the computers, solve the problems, and am otherwise at their beck and call when I’m at home. But am I really there, serving and giving, cheerful and sincere? Or do I chafe at the chores and move through the motions and withhold real devoted love? In many ways, my life is not my own. I live in their house. I eat what they eat. I watch what they watch. I rarely read. I feel always tired. Dad told me that he feels so very tired by the end of the day, and feels so very tired waking in the morning, and feels so very tired throughout the day, his reading often leading to napping. “One of these days I might go to sleep in my recliner with my book and just not wake up. That’s how it should be: that’s how death should come.” He shows excitement at seeing a movie I have selected for him, then falls asleep ten minutes in. Upon referral, we set out to watch a new murder mystery movie, our dinners growing cold on our folding TV trays. “We should pray,” Dad reminded us, and I found myself laughing. “Yes,” I chimed in, “we had better pray over our food before we watch our murder.” The prayer took two minutes and the movie two hours, two wasted hours, two hours distracted from things that really matter. I am glad we prayed.
(Pictured above: roasted vegetable bisque made from scratch without a recipe but with tips from my daughter Laura, a wonderful cook.)
In the relative warmth of 49 degrees Fahrenheit, I dragged the seventy-five-pound eight-foot by four-foot ramp into the garage, onto a canvas drop cloth, closed the garage door, turned on the lights, and plugged in a heater. With a temperature of 50 degrees, I could roll on the paint—a grit-filled goop, smelling of ammonia like an enormous litter box overdue for a cleaning—to the ramp. The wind had blown warm for two days, had melted all the snow, and had brought a steady day-long drizzle. By midnight, when I rolled on the last coat, the rain had turned to snow. I was engulfed in my insulated coveralls, ear muffs, hat, heavy coat, and big snow boots when I met Mom in the kitchen. She told me the garage lights would not come on, and would I check the breaker in the basement, and would I read the letter from Homespire and tell her what it meant. With the breaker switched back on and the letter explained, I took my overheating self outside to confront 12 inches of new snow, the wettest and heaviest snow of this depth I have known. Two hours with Dad’s husky Toro almost finished the job, which I cut short to dash upstairs, peel off my drenched clothes, and re-dress for church. The Zoom link would not work, so Dad missed remote church services again. I got Mom’s Subaru stuck in the middle of the snowbound street, but managed to gain four-wheel traction and drove the block to church. Bless her heart, Mom really wanted to go to church, despite the snow and ice—using her cane in one hand and with her other arm in mine, we inched our way over the snowy walks and into the building, then down the aisle to her accustomed padded bench. I felt eyes boring into my back as we made our way, late, to our seats, and I wondered why I cared, especially knowing what good people they are. Another four inches fell during church meetings. Terry and I joined forces to re-shovel our driveways and sidewalks, then to tackle the 16-inch-deep snow at Melissa’s house across the street. I queried my motives for moving the snow from her three-car driveway. She is single and neighborly—was I trying to impress? I decided not. T. Wright writes that to do something “in Jesus’ name” has less to do with the name of Jesus than with the way of Jesus. “[A]s we get to know who Jesus is…we find ourselves drawn into his life and love and sense of purpose. We will then begin to see what needs doing” within our sphere of influence, and get to work—in his name. Dad has shoveled snow from Melissa’s driveway for 24 years. I decided that, no, I was not seeking her attentions; rather, I was continuing my father’s Christian work because he can no longer do the work himself, and because the snowblower and her driveway are now within my sphere of influence, and because I am carrying on Dad’s work, doing it in his name, for his honor. Over the concussive combustion of two hefty snowblowers, Terry and I communicated with simple hand motions, a thumbs up here, a directional wave of an arm there, a knife hand across the throat to say “we’re done here.” He is 82 and slowing down, and despite the muscle of his monster machine, he was tired and glad to be done for the day. My snow removal efforts amounted to four hours and aching hands and shoulders and a satisfied conscience. And the snow is still falling.
(Pictured above: deep snow in Settlement Canyon, Tooele, Utah.)
The morning sky dawned pewter gray, and leaden light seeped through the plantation shutters. I climbed the stairs after my stationary bike ride and knee push-ups, and through a doorway saw Dad sitting on the edge of the bed, in profound shadows. He did not move, but stared at the wall, at the shutters, and I could feel him contemplating his next move, as in, Do I have the strength to slide off the bed onto the commode? Will this day deliver the same slow struggle? He knew it would. The nurse had called him the day before and had reported, “The doctor asked me to let you know your MRI looks good.” What does that mean? he had asked. She did not know. But I knew. A “good” MRI means no lumbar spinal condition is contributing to Dad’s profound leg weakness and wasting, to his paralysis. A “good” MRI means the certainty of a bad diagnosis, of diabetic amyotrophy, incurable, untreatable, a close cousin to Lou Gehrig’s disease, amyotrophic lateral sclerosis. The call annoyed him. He had questions for the doctor to which he wanted answers, like, Is there anything I can do to slow my deterioration? and Is there any connection between September’s meningitis/encephalitis and today’s diabetic neuropathy? “Your MRI looks good” answered nothing, but just eliminated a negative. Mom called to make an appointment, and the receptionist said Dr. Hunter would see him again in four months. (If he’s still alive, I could not help muttering to myself.) Watching Dad sit on the edge of his bed, I pushed away thoughts of his perpetual fight against despair; I do not have the strength to absorb his angst. But I can cook his dinner, and served a beautiful baked chicken and dirty rice baked in a French cast iron casserole. “Thank you for this lovely dinner, Rog,” Dad praised, and Mom giggled cutely for the hundredth time at being waited upon. We browsed through Netflix for 30 minutes, and finally settled on an obscure Norwegian movie with dubbed English dialog, and Dad promptly settled into a nap for the duration. I used the time to assemble his new office chair, since the hydraulic piston had broken on his old chair and it had sunk permanently to its lowest height, too close to the floor for him to get up by himself. He will feel lordly in the new (and inexpensive) black bonded leather chair, and much more comfortable as he writes letters to beloved family members, one who was injured by a drunk driver, one serving a Church mission in Massachusetts, one shivering in Montana, one in the Army in Honduras, one who is brilliant and has big questions and a good heart, and to others who he loves. These are his last contributions, the contributions he has the strength for, little actions with big meaning for those he loves.
(Pictured above: chicken and sausage on a bed of dirty rice, Cajun style.)
I did not lie. I was truthful. But my truth was incompletely portrayed. I had peeled back only one or two layers of the cathartic onion. Perhaps a reader would not want or need more truth about my Christmas struggle. “TMI” one of my children might say to another of my children who might catalog the day’s (bowel) movements: Too Much Information. But I did not write this exploration for a reader: I wrote this exploration for myself, to study and understand what happens in the heart, to maintain my mental health amidst pressures not before encountered, and to remember the tangy sweet-and-sour of these last days. I have grieved living alone. I have grieved losing my spouse. I am beginning to process the griefs of living with, and caring for, my dear dying parents. My true Christmas griefs—frustratingly fresh, still, after seven years—are none of these. My true Christmas griefs are the loss of hopes and dreams for a life with an intimate loving partner, the loss of a family unit in a church culture in which the nuclear family is the dreamed-for idyll, the loss of family-together traditions, family reunions, family camping trips, family vacations, family portraits. I insist that we are still a family—families come in all shapes and sizes and varieties—and under the doctrine of my Church, we are an eternal family unit, connected forever and ever, if we want to be. That this family has lost something, however—something living and vital and happy—is my sorrow and sadness and grief. TMI, perhaps, especially for my children, who bear their own crosses of grief and loss and sorrow which they did not deserve and were not their fault. Crosses I cannot carry for them. But I can love them, I can lift them, I can believe in them, and I can trust them as they pilgrim through life. And now I am part of another family, another variety of family, made up of a very old man and woman married to each other for 60 years, and their 58-year-old baby (Mom often calls me “baby,” as in “good-night baby” and she and Dad frequently tell me the old stories of when I was an actual baby in cloth diapers and plastic pants and gumming the crib railing and crawling to the cabinet to empty it of clanging pots and pans and lids)—a threesome family. And the father of this family went to the hospital today for an MRI of his lumbar back, to look for and rule out an injury that would be causing his dramatic and worsening wasting and weakness, for Dad has no strength to walk, stand, pivot, lift or drop the foot plate on his wheelchair, lift his feet onto the foot plate or slide his feet off the foot plate, or heave himself into the Mighty V8. What he has called “paralysis” for months, and what the doctors said was not paralysis but profound weakness, has become factually a very real paralysis. As I walked through the garage door from work, Dad called urgently to me from the bathroom—I ran to help lift his fleece pants over his hips and pivot to lean heavily into the walker. The bathroom routine has many procedural steps, all important, but the procedural nightmare is, ironically, a doctor visit—the doctors may kill him before his illness does, what with all the consultations and tests. Sparing the minute sequential detail, I will mention only one step, that of rolling Dad in his wheelchair down the eight-foot ramp. In the fall I stained and finished the ramp, and it is handsome and shiny and brown…and slick as ice when wet from rain and snow. The snow came last night, a warm heavy snow, leaving every surface thoroughly wet, and I simply could not wheel him down the ramp today, not without falling on my backside or my face and losing Dad and the chair to gravity and the sloping driveway. So, in a huge irony, and with great difficulty, I helped Dad up out of his wheelchair, down two steps, and back into his wheelchair, bypassing my beautiful ramp. If the temperate 50-something weather holds (it will not—this is December 28), I will slather on a grip-paint product recommended by a neighbor, who I think is worried I will kill my dad or myself on my ramp.
The last words Dad said to me on the night of Christmas day were, “If it weren’t for you, Rog, I would be dead.” The macabre pronouncement startled me, and I wondered if it bespoke gratitude or chagrin, and whether I should feel satisfaction or dread. I know this: I could not answer him. This one day of all the year’s days had exceeded my strength to generate joy. Still single and alone and clueless about making a change. None of my seven children or four grandchildren with me. A loved one who will not speak to me. Reminders of my life’s great griefs. In response to Dad’s comment, I had strength only to slip from the room and to find my bed and sleep, without saying good-night to anyone. This holiday darkness has been gathering for weeks, and fully came over me on Christmas day. I have been contemplating how to illustrate depression with words. Perhaps this: imagine a claustrophobe tied up and wedged in a magnetic resonance imaging tube with the awful wretched throbbing penetrating shredding noise of a year-long scan. Or: a perpetual myocardial infarction gripping your chest, squeezing hard, and you think you might die, but somehow you do not. Joy eluded me, and happiness fled, and this despite Mom’s and Dad’s cheer and generosity, my siblings’ love and support, and my children’s admiration and friendship. My world had darkened and closed in around me, and I could feel only emptiness. I was in the MRI tube, holding my chest. In the dark underworld of depression, I cannot imagine any other life, in that moment, than a hopeless life. Disabled for a spell, yet I have always had a vague sense of a far-off entity whispering to me, “Hold on,” assuring me I will emerge. I cannot believe it in the moment. But I can keep going through the motions of living, and I can be still and wait. The scripture of my Church teaches that the light which shines in the universe, and the light which enlightens my mind and yours, all proceeds forth from the presence of God to fill the immensity of space and every human being in it. Truth also comes from God’s presence. Light and truth are one. God has put a measure of light and truth in the hearts and minds of all humankind. Through free will I can grow that light and be filled with that truth. That thing that whispers to me is light, dim and distant, but undeniably present. If I can but muster a mustard seed of strength, a farthing of faith, an ounce of compassion for myself, my strength will grow, and I will be able to hold on to the hope that light and truth can chase off the darkness and be mine. Sleep is a great mercy, and I slept, and I awoke the next morning to the fact that I had survived another Christmas, that yesterday’s darkness was behind me, that today I just might possibly find a shimmer of light and hope. I ventured onto the frozen trail, excited to try my new tool, my Kahtoola MICROspikes (pictured above), strapped to my hiking boots. All of the 50 hikers I passed wore spikes—I am very late to the party. But I have them now, the right tool, and I strapped them on and climbed mile after mile on snow and ice without once falling back or slipping up as I made my way slowly and steeply up the mountain.
I sat on the side of Dad’s bed to wake him on this Sunday morning, this Christmas morning, to talk about getting him showered and dressed and settled in his reading recliner. I could see that his whole body ached as he turned his head on his arthritic neck and stretched out his invalid legs and brought his arms under him to reposition. His welcoming words were unexpected: “I have dreams…” I wondered what kind of dreams, whether literal sleeping dreams or waking hopes and aspirations, and did not have to wait long to learn. “And in my dreams, I am walking.” I was touched that he had allowed me into this intimate and personal place, the place of his soul’s desires, and was touched by the aching irony of his wish to be healthy and for his body to function, but to be able to do so only in impotent dreams. Dreams for the present broken. “Sometimes,” he continued, “sometimes I think my paralysis has happened to me because God is trying to teach me a specific lesson.” I personally am disinclined to believe God targets us with specific afflictions to teach us particular truths. Rather, I am inclined to believe that the nature of this life is designed to bring us into inescapable contact with experience, and the equally inescapable choices associated with that experience. A coworker is rude to me, for example. That is the experience. Will I react angrily, self-righteously, and judgmentally, or patiently, compassionately, and empathetically? That is the choice. And my choice—that all-powerful vehicle of self-creation—establishes the trajectory of my character. But despite my inclinations, who am I to say that God cannot teach us in surgical fashion when he finds it appropriate? “I want to be the kind of man who chooses to be humble of his own volition and is not compelled to be humble” by God or by circumstance. Dad’s humility is the least of my concerns for his soul. In fact, I am not concerned at all for his soul, only for his present comfort and happiness. When Dad kneels before his Savior, he will look up into that glorious face and declare, “I did my best, Lord!” That will be a sweet moment, for God accepts the offering of every effort we make for good. With crumpled wrapping paper strewn about on the floor, and small piles of Christmas gifts on chairs, Dad sank into his gift of a Popular Science edition about outer space. A photo of the Carina Nebula decorated the back cover, a gift from the Hubble and the James Webb. “I love outer space,” he exclaimed. “It won’t be long before I’m there.”
(Photo of the Carina Nebula courtesy of NASA, used here pursuant to the Fair Use Doctrine.)
I thought they were cute. Maybe others disagreed. But the notion of old glass dressed up and repurposed appealed to me. I made 78 of them, each unique, with patches and stripes and twists and belts in pastels and bright colors. My children helped me as we sat around the kitchen table with our diluted white glue and our strips of colored tissue, inventing patterns on the fly. I bought 78 plastic flowers from a dollar store and planted them in the jars, filled with gravel. I sold some. I gave some away as gifts. I put electric candles in them and arranged them to form a colorful lantern lane at Laura’s wedding. And I put the leftovers in boxes which I stored in the garage, which I brought with me to Mom’s and Dad’s house, and which have been sitting idle in their basement. The time had come either to throw them away or to give them away. Later this afternoon I would decide. For now, Hannah was playing in the wet snow rolling and assembling snowman parts, using Austrian pine needles as whiskers and pine cones for eyes, and an Olaf stick for a tuft of hair on top. And I knew this was my chance to play, to turn away from my infinite chores and to play, to play with my daughter making snowmen and a fort, a massive fort, founded with spheres of heavy wet snow too large for three adults to roll any farther, a five-gallon bucket making big cylindrical bricks for walls with battlements on top. And my son Caleb loved me enough to leap from the house barefoot and giggling to run madly in the snow and to tackle me with laughter and glee and rolling in the snow and throwing wet snow in each other’s faces and laughing like little boys—he loved me that much. When they left to spend Christmas elsewhere, I sank back into that dark lonely place, knowing that to claw my way out on this Christmas eve I would be wise to find a way to look outward from myself to someone else, and those dusty papier mâché mayonnaise and pickle jars in their basement boxes came to mind. While Mom made a list, I rushed to a dollar store for fresh plastic winter flowers and a bag of cheap gravel, and made 20 homemade vases to deliver on Christmas eve. Mom beamed when I asked her to come with me and to navigate to her 20 chosen homes, where in the orange wisps of sunset I set the vases on doorsteps to be found on the eve or on the day of Christmas.
Dad turned 87 years old today. Which means, he said, the day was the first of his 88th year on this planet earth. Eighty-seven is just an arbitrary number to me, but its numerical value in a human-life context does imply advanced age and all the ailments and challenges and wisdom that accompany. And 87 seems awfully close to 90, which everyone knows is old. But to me, Dad is just Dad, whatever his age. He refused my recent suggestion that we move our traditional Baker Christmas Eve party from the 24th to the 23rd—he would not countenance celebrating himself in juxtaposition with the Celebration of Christ. What’s more, he shares a birthday wish Joseph Smith, born in 1805, to whom the Father and the Son manifested themselves in fiery visitation and through whom They revealed a restoration of the gospel and church of Jesus Christ. No, Dad would not set himself up for celebratory propinquity with the Son of God and His great latter-day Prophet. I conceded the point and informed him of the family conveniences of celebrating Jesus and Joseph and not him on the 23rd, and that any festivities would be purely coincidental and all pointed heavenward. So, the family gathered, and we ate a hearty meal, and we sang Christmas carols and hymns, and Dad narrated the story of the birth of Jesus in the company of animals and the humblest of people, and how even the earth’s great scholars from eastern lands came to honor and endow. Two great-grandchildren, Lila and Gabe, arranged the animal and human figurines as the story played out in their three- and four-year-old minds. And, yes, we sang happy birthday to Dad, by which point he could not escape our ebullient attentions. And he received our gifts, some wrapped in gold paper. Now we are two days from Christmas. People in politeness persist in asking me if I am ready for Christmas, to which I answer “almost.” But I wonder if I am ever ready for Christmas, if any of us are ever really ready for Christmas. I did manage to purchase all the gifts and mail all the cards which convention and family require. I helped decorate the house and the yard and helped cook the meals and bake the pies. I joined in the board games and snowman building and the Christmas-movie watching. But is my heart ready for Christmas? Is my heart ready for all seven of my children and their spouses and children to be elsewhere for Christmas? Is my heart ready to make Christmas special for Mom and Dad, the objects of my awkward caregiving, and I in turn the past and perpetual object of their careful childrearing? Am I ready to be humble and kind and generous? Am I ready to forgive and to move forward with courage into newness? I want to answer, Yes, I am ready, or will be in time, but the silent truth is, I am not ready—not really—but I’m trying. I was ready enough to stand around the piano with the family group and sing my part, and I was ready to join the friendly snowball fight with the children and to be tackled by my barefoot smiling son in the snow and to roll frostily around grinding snow in each other’s laughing faces, and I was ready to say “I love you” to my cherished ones.
(Pictured above: my Nutella French Silk Pie, in a Julia Childs pie shell.)
(Below: glimpses of a celebration, with birthday boy under the light of the lamps.)
Mom and I started a puzzle. 500 pieces. It came in the gift basket delivered by the caroling young women from church. It is a pretty puzzle of a nature scene, in the mountains, tinged with the scarlets of early fall. Warm and pleasant, a reassurance during our freezing dirty-snow urban winter. Mom separated out the edge pieces and starting making matches. I managed to frame the border during a Father Dowling mystery episode (which I handle so much better than NCIS for the 1990s absence of violence and gore). During a dinner of creamy chicken vegetable soup, Dad obsessed about the bitter cold and how during their first winter here 24 years ago a pipe burst in the basement for lack of insulation (the contractor’s helper had run out of insulation and had left the pipe exposed and the contractor now had to come back and fix the pipe and fix the ceiling and fix the wall, plus add the insulation that would have prevented the whole disaster) and how this year he did not have the strength to wrap the house hose bibs like he has done every year before and how they were exposed and how he hoped they would not freeze and crack and he wondered how far into the house zero degrees could penetrate and could zero degrees reach the basement pipes and burst them again? Seeing no point in discussing the matter, I dressed in a heavy coat, strapped on a headlamp, and left the house armed with a stack of thick rags, plastic shopping bags, and neon-green duct tape, trapsing through deep snow to wrap the faucets—we all hoped this precaution would be sufficient, noting that the faucets were already anti-freeze hose bibs. “You have set my troubled mind at ease,” Dad smiled thankfully. Needing to rise at six the next morning, I said good-night at ten and bent to bed. But I often wake at 12:30 in the morning to the sounds of Dad’s effort to transfer from the stair lift to the wheelchair, and Mom’s efforts, in her long cotton nightgown, to push the chair to the bed, Dad helping what little he can, and their talking, and sometimes their bickering over him issuing instructions she was already following. I can tell from the tone if my help is needed, when I throw on my bathrobe and respond. So long as he maintains his night-owl lifestyle (granted, he no longer reads until three in the morning), I cannot be the one to help him get to bed. A routine of caregiving until 1:00 a.m. then rising at 6:00 a.m. daily would destroy me, probably in only two days’ time. Thankfully, the CNA assists Dad in the mornings after I have left for work. She knows to use the wheelchair to get Dad from the bed to the shower, to use the heavy-duty seated-walker to get him dried off and to the couch for dressing and to the stair lift to descend for breakfast and a day’s reading. That is what he can do: read and read and read. And too quickly the time comes to prepare another dinner worthy of them and the legacy they leave, perhaps lemon chicken on a bed of pesto couscous, or Hawaiian chicken on a couch of coconut rice (my favorite), or stewed spicy chicken and dirty rice, or, on occasion, beef franks sliced into canned pork and beans. The puzzle beckons after dinner is cleaned up. I stare at 500 unconnected pieces, feeling totally intimidated, knowing I can never find two matching pieces in that chaotic morass of 500, then somehow forming the border and slowly fitting together the interior, until the puzzle is done, and I am astonished and wondering how it happened. So many pieces. So many moving pieces.
We have experienced another week of steady decline in Dad’s mobility. He has suffered increased weakness. I have suffered increased worry. He cannot walk. Life is very different when you have walked for 86 years and suddenly find yourself paralyzed and immobile. The word of the day is “transfer,” by which I mean the experience and process and effort of shifting one’s bulk from one seat surface to another, like from and wheelchair to a toilet, or from a shower chair to a walker chair, in which one moves laterally rather than vertically, and does not ambulate. I sat down across from Dad to suggest the time had come to focus on transferring rather than walking. “I think we should refocus our approach,” I explained. He nodded in sad reconciliation, feeling humiliated and small. How could I reassure him? In truth, with the power wheelchair, he can enjoy greater independence and freedom of movement than with trying to walk. But transference is a skill to be practiced—it is not an easy exercise, and I invite you to pretend your legs do not work and try transferring from one chair to another with only the strength of your arms and the span of your bottom. Now add arms to those chairs. To help him transfer from off his sofa to his wheelchair, I installed risers under the sofa feet, raising the couch five inches, and screwed three inches of lumber to the legs of his recliners. Struggling with this new necessary skill, his transfers can be, shall we say, inaccurate, like onto the arm of a chair instead of into the seat of that chair. Some transfers are violent, like when he fell from his wheelchair onto his couch so roughly that he knocked the couch of its risers and was lucky not to capsize altogether. Since the escapade did not end tragically, I can comment after-the-fact on how I wish I had seen it happen and how funny it must have seemed. A hair’s breadth of fate or providence separates tragedy from comedy. Dad pronounces all his mishaps as comical, veritable jokes, although he curses more than he laughs when in the midst of transference. Mom pounced on me when I came home from work, before removing my coat and tie, asking me to re-elevate the couch. Then she showed me the toilet plunger sitting in the kitchen sink, and explained how the food disposal had plugged up with old spaghetti, and she could not clear the clog, try as she might. Putting my height and weight into the plunger, I compelled the dirty water and ground up food through the pipes and successfully drained the sink and emptied the disposal. She is always so grateful when I fix things she can no longer manage. The next problem to solve involved her pharmacy of 24 years. She and Dad had received letters informing them that their pharmacy was no longer in their insurance network, and in only two weeks they would have to pay full retail price for their medicines. I offered to help switch to a new pharmacy, and envisioned the hassle and weariness of assembling all the prescription bottles and insurance cards and driving to the new pharmacy to see the staff and taking an hour to input the data into the new system, and the weather was very cold, and the streets icy, and the sky darkening at 4:30 p.m., and I really did not want to leave the house on this cumbersome errand. Instead, I called the store, they took our information, and promised to get their information transferred from the old pharmacy to the new. Mom beamed, amazed at my miracle working with the sink and the pharmacy. I will try to elicit the same response with tonight’s dinner. It is time to shift from writing to cooking.
(Pictured above: Italian pesto pasta and chicken with brazed asparagus.)
December 17. Twelve degrees Fahrenheit. I am hiking to Bell Canyon Falls. But I am not alone this time. My son John read about my December 4th loneliness and invited me to hike with him today. Dad slept still when we left, but Mom asked his questions for him, about whether we had water, food, good boots, warm gloves, our hiking poles. We pushed past where I had turned around two weeks before, pushed up to where the slow lay three feet deep beside the trampled trail. We talked about life and love, relationships and challenges, joys and dreams, and I rejoiced quietly in his conversation and his character. Cold in my bed two nights before, I had dreamt of death, a peaceful dream in which the presence of Death descended gently to touch those whose time had come to return—a soft, benign touch, not threatening, but caring and compassionate, possessing a perspective large as a universe about our journey through an eternity of time in an infinity of space. Still, when I awoke in the dark, I felt compelled to check on Mom and Dad, to see if the dream had been prophetic or merely a macabre play on my anxieties. As I stood in their bedroom doorway, the nightlight on the wall behind me cast an enormous human shadow on the wall before me, and I thought of the grim reaper, only I was grimless, and guileless, and I was not a messenger or a harbinger, but a steward and a servant and a son. Dad snored calmly, and Mom’s sleep had sunk beneath his snores. Throughout the week, groups of neighbors and church members had stopped by to wish Mom and Dad a merry Christmas. A group of six young women and their adult advisors came to carol. Dad had wanted to greet them in the formal living room, but he could not walk that far—he may never walk that far again. So he smiled and joined in the singing from where he was, holding the large gift basket in which lay a loaf of cranberry walnut bread, wool-blend socks (even a pair for me), and mint truffle hot cocoa mix. A bunch of boys with their adult advisors came to deliver a puzzle and oranges and blonde brownies and Andes mints. Couples delivered a pineapple, whole wheat bread, peach freezer jam, a poinsettia, ornaments for the tree, and green bananas (because Mom told them Dad likes green bananas, not the brown blotchy sweet ones she enjoys), each gift an expression of love and regard and caring. This is what I thought about as I slipped and rolled clumsily but harmlessly down the steep snowy mountainside, snow sticking to every inch of me, still with no spikes on my boots, still in the mountain’s cold shadow, my knees complaining loudly, the moisture from John’s breath frozen stiff on the whiskers of his mustache, my water bottle frozen in my coat pocket. And then sunlight struck the tops of the snow-laden trees and worked its way warmly down to the snow-covered sagebrush and the deep snow drifts and the path and two hiking men with their poles swinging in easy rhythm.
I am the shy quiet guy that lives with his parents, almost 60 years old, who they see pushing Dad’s wheelchair very slowly, so Mom can keep up, down the aisle to the front church pew, where a space is reserved for a wheelchair, where Dad has a better chance of hearing the worship meeting speakers, in the front where our family has sat in church for decades: in the front, where Dad, sitting on the stand those many years, presiding and exhorting and teaching, could keep an eye on his six children, not that we caused any trouble, and where he could be as close as possible to his family while carrying out his lay clergy duties. I am slowly learning their names, making a few acquaintanceships crawling toward friendship. But today Dad was too weak to attend church meetings, and I had my granddaughter Lila with me, and we walked hand in hand down the aisle where Mom sat alone on the front church pew, and I could feel the eyes on me, friendly and interested and astonished eyes, and could hear their thoughts: Oh, he has a story! And they wondered what my story could be as they saw my oldest son and his good wife and the little black-haired baby, my newest grandchild, and Lila my three-year-old friend, all sitting together in the front. I share my desserts with church families now and then, always friendly cheerful encounters after which, as I am walking away, I hear them thinking to themselves: I wonder what his story is? And they wonder if mine is a strange tragic story, as they munch tentatively, at first, and then with gusto, on my latest baking attempts, tonight’s being an enriched German holiday “Stollen” bread filled with dried fruits and sweet almond paste. I baked the Stollen after cleaning up our Sunday dinner dishes, when I wanted to get off my aching feet but wanted more to make something pretty and interesting and sweet. Dad asked if he could have a slice, which of course I gave him, in spite of the spiteful diabetes that is wrecking him, because he will be 87 in two weeks, and it was a thin slice after all, and let him live a little for heaven’s sake, and I said “no” to his importuning for seconds. And he asked me, “Rog, will you stand by me while I try to stand up?” but I heard, Rog, will you stand by me as I am wasting away, in my pains, as I am dying? Will you stand by me to the end? Yes, Dad, I am here, and am not going anywhere.
(Pictured above and below: my first attempt at Stollen, an 18-inch loaf–delicious.)
Dad’s eyes followed me as I moved about the kitchen preparing my breakfast. “Let me know what you think of those gluten-free no-sugar keto cereals,” he commented as I rummaged through cereals bought for him that he will not eat. You could try them yourself. “Not blackberry jam!” he gibed when I took the bottle out of the refrigerator. “Are you putting blackberry jam in your peanut butter granola?” No, Dad, I’m having toast with jam. “And is that cream cheese?” Yes, Dad, I like it with toast and jam—reminds me of Portugal. “You’re putting milk on your cereal, right?” Oh, my, gosh, Dad—stop commenting on my food! I can feel his eyes on my every movement, and I want to scream. But they are benign, innocent, aged eyes. Why does the inoffensive become so irksome in people we love so much? After breakfast would come the drive to the hospital for the NCV and EMG tests. “You brushed the snow from the Suburban, right.” Of course, Dad. And I shoveled the driveway. And the Terry’s driveway—he has been looking feeble lately—and Melissa’s driveway. I had enjoyed marching the snow blower through four inches of new powder; it sparkled in the sun at it flew. Clearing our own driveway was anticlimactic, so I moved to the neighbors. I hoped they would now know it was me—I enjoyed thinking of their surprise and gratitude. And, being anonymous, I would not have to face my clumsiness at being thanked and smiling and saying you’re welcome and other social engagement awkwardness. I have noticed my happiness is greatest when contributing to the happiness of others. There is joy in service. So why do I spend so much solitary energy unsuccessfully pursuing my own happiness? There really is something to that business of finding your life by losing it. At the hospital, the doctor performed two tests. First, nerve conduction velocity: he hooked up small electrodes above key nerves and administered numerous not-unpainful electric shocks to measure nerve conduction in Dad’s legs and arms. Second, electromyography: he inserted a needle in key places to “listen to the muscles” as Dad flexed them in various instructed ways. Dr. Hunter focused on his work as I focused on Dad’s grimacing face and jumping limbs and spots of blood dripping. The testing shows you have severe neuropathy in both legs; severe nerve damage. We now, finally, have a diagnosis. Diabetic amyotrophy: rare condition…severe burning leg pain …weakness and wasting of the muscles. Experienced by older patients with moderate controlled diabetes. No cure; no treatment. The pain may subside, but the weakness will remain: your strength and mobility will not return. I am sorry. “Well…that’s life…I’m 87 in two weeks…my body is falling apart…that’s what happens.” I retrieved the wheelchair from the back of the faithful Suburban, helped Dad slide from the front seat into the chair, pushed him through the melting ice and up the slick salt-covered ramps and through the front door to his recliner, the salt crunching under the wheels against the cold white tile.
(Pictured above; our after-hospital dinner of lemon chicken on a bed of pesto couscous with white bean and corn salsa.)
“I’m not doing my arm exercises today,” Dad announced with some belligerence. I had heard the CNA coughing and sniffling continuously as she helped him bathe and dress. How ironic, and alarming, for a health care provider to bring sickness into our home. Dad was none too pleased, and invited her to leave an hour early. He asked me for the physical therapy supervisor’s name (we’ll say “PT”) and phone number: “I’m going to call PT and tell him not to come back.” Dad could not walk, could barely move, the day after PT poked and pushed and stretched him, yet a new depth of debilitation. He made the call and left a message. He did not confront either the CNA or PT, instead just removing himself from the threats. For days now, there has been no question of walking to the bathroom at night: the bedside commode has to do, and it is all he can manage to transfer from the mattress to the commode three fee distant. Today he could lift neither foot over the four-inch lip of the step-in shower stall. On a happier note, I installed the old steel banister, removed with the stair lift installation, in the basement stairwell, making trips to the cold storage room and the freezer much easier for Mom: a “piece of cake.” This morning I brought up frozen chicken breasts to thaw. Hyrum came over for dinner—his last, for a while, with Mom and Dad—and I transformed the raw bird into tangy Hawaiian chicken on a coconut rice bed. Hyrum, at age 20, is leaving for Brazil to begin his volunteer missionary service, as I did in Portugal in 1983, and as Dad did in Brazil in 1956, for The Church of Jesus Christ of Latter-day Saints. Two years he will be gone, and I will miss him. He is my son and my friend. Dad told him the old stories about eating avocados the size of grapefruits for lunch and being arrested at the behest of local clergy and inviting hard men to lead their families in kneeling prayer and about feeling the love of God for the people. Hyrum said his farewells, promising to send Mom and Dad his weekly email updates. “I may not be alive when you get back, Hyrum,” Dad mused, “but I’ll be happy to read your emails while I’m still alive.” Hyrum and I were both poignantly aware of the real possibility of Dad’s passing before Hyrum’s homecoming, making sweeter and sadder this good-bye from a grandfather to a grandson.
(Pictured above: Hyrum with Dad and Mom.)
The basement stairs, before and after installing the steel banister, left.
December 4. Twenty-seven degrees Fahrenheit. I am hiking to Bell Canyon Falls. I had to get out of the house. As I climb, leafless gambel oak give way to fir and spruce, and one perfect tree sports Christmas ornaments. Wild boxwood and wild Oregon grape and aromatic sage, all perennially green, poke through the snow. A young woman passes me on her morning trail run, then stops to change her podcast (she explains). I tell her my podcast is just the ruminations in my own head, and she approves. They are my prayers, in the absence of the more traditional kind. Preparing to leave the house, Dad bird-shot me with questions: Will you be warm enough? (Yes, I am wearing five layers.) Do you have a hat and gloves? (Of course.) Do you have water, and food? (Always). Do you have good boots? (Yep.) Will there be snow and ice? (Undoubtedly.) Will you take my hiking poles? I am making good use of Dad’s red-and-black hiking poles, the same poles which a month ago helped me climb the flagstone paths to Pico Ruivo, the icy top of the banana-clad island of Madeira. Now they help me keep my footing on the ice and help me make my way up and down the boulder-stepped trail. My quadricep muscles scream with soreness, still recovering from four games of bowling with Hyrym, the equivalent of eighty left-leg lunges. I wonder if this is a hint of what Dad suffers when he rises in agony from a chair. Once again, I am hiking in the wilderness alone, and I am tempted to feel sorry for myself. But any number of people would have come with me if I had asked, if I had not been too shy and afraid to invite them. Therefore, I am alone by choice. I try to pray more formally as I walk the snow-packed trail, false-starting with piths like “help me not be sad.” Then I remember that Jesus’ modus operandum is not to rescue me from hardships. Indeed, I am in this world to experience adversity and to choose my way through it. Adversity is my teacher. How I confront adversity is entirely my choice. God will not take away my hardships or make my choices. Instead, He will help me see truth. He will offer strength and comfort. He will be near me even as I struggle. But he will not take away the struggle. To do so would rob me of my chance to choose and grow and become. A pretty, middle-aged woman with a wide mouth and a wider smile hikes past, and I am momentarily sad that I am hiking up and she is hiking down. Foolishness. I see splashes of red through the trees, and hear giggles, and four female Santas amble incongruously by, costumed in red tights, white-trimmed red coats, and red stocking caps. Okay, I did not expect to see that in the Lone Peak Wilderness Area. Two and a half miles up the mountain, the trail grows steep and my desire to see the frozen falls plummets, so I turn around. I lean heavily on my hiking poles to ease my knees down the boulders, and a young woman jogs past and calls out, “You should get some spikes,” and I see the spiked chains around and under her shoes. “Sixty bucks at Scheels.” Indeed, I should.
Every day, it seems, Dad laments, “This is my worst day yet, Rog.” Every waking walking breath is an audible grunt or groan—no normal breathing in this house. He fights for life with all his energy and might, both of which are diminishing—he knows it, and he is disheartened. And so am I. In my 14 months living here, I have seen Dad progress through late-life stages I did not know existed, from the two-foot-shuffle to the hand surf, from the hand surf to the clickety cane, from the clickety cane to the walker, from the walker to the so-slow stair lift, from the stair lift to the wheelchair, pushed, then self-propelled. The recliner is an ever-greater presence in each successive phase. So is the pain. My worst day yet. What am I supposed to do with that statement, that fact? How am I to hold and examine and process that reality? Why, of course, I am to be a fathomless fount of patience and love, of smiles and good humor. And, of course, I am not. I am a shallow pond of brine, with fresh water trickling in here and there. His reality creates mine, and I find myself more irritable and impatient, symptoms, perhaps, of feeling powerless, and empty, and tired, and stuck. I began this experience as a consecration, a mission of providential origin, I thought, and still think. But a mission’s initial glamor always attenuates and turns into a long hard slog. One’s initial intentions, however sincere, begin to quiver and equivocate. Only then can I see, do I know, the kind of missionary I am. No saint, to be sure. No hero, certainly. Just a laborer who shows up day after day, whose contentment is not to be found in his perquisites but in the solitary knowledge he is doing what must be done. That alone is ennobling, I suppose. And will this mission, this story, have a happy ending? As with all true stories, the answer is both yes and no—both the joy and the sorrow. How I feel when the story ends will be my choice. Before it ends, however, I can choose to listen with a smile, to cook and clean with good cheer, to do the honey-dos with zest instead of a sigh and a roll of the eye. Time to stop writing. Time to get to work.
(Pictured above: the javelina guards the varnished ramp, slippery from last night’s snow.)
I informed Mom and Dad I was cooking southwest wraps for dinner: ground turkey, black beans, corn, and rice rolled in tortillas and crisped in an iron skillet. He looked at me funny and asked, “Rats for dinner?” “Wraps,” I reassured him. Earlier in the day he had cut himself. He had reached through the bathroom doorway for his walker handles, and the door’s strike plate had sliced the paper skin of his forearm. The CNA wiped the floor clean with baby wipes, and bandaged his arm. He sat at the kitchen table telling me about it. My daughter Laura has sent me her ten favorite recipes—all winners—and I have made two or three each week to spice up Mom’s and Dad’s dinner time. Tonight, we gobbled up Cajun chicken with dirty rice, which I learned is rice cooked in the fats and juices and spices from cooking the sausage and chicken pieces. Dad praised the meal no fewer than six times before we finished eating. I relish the experience of making beautiful and delicious dishes which people enjoy. As we ate, Dad told me the results of his Mayo Clinic spinal fluid test. The nurse had called to inform him that his spinal fluid is “completely normal.” Completely normal. “My spinal fluid is completely normal,” he sounded discouraged. “But I am getting worse by the day.” Once again, the good news was hard to take. No diagnosis equals no treatment. Here was one more possibility explored. Here was one more hope disappointed. Here was yet another beginning of searching for elusive answers while suffering unanswerable pain and weakness and while fighting for his life and for his quality of life. I am powerless. All I can do is cook dirty rice. James the physical therapist stopped by after dinner to evaluate the effectiveness of therapy. He asked Dad all the same questions everyone else has asked. He poked and prodded and asked “Does that hurt?” a dozen times. Yes, it hurts. A lot. After ten minutes, James had figured out what dozens of doctors and nurses and tests and therapists had not figured out. The spinal nerves are inflamed, causing him pain, due to his age and his recliner sedentariness and his stooping over and due to his spinal joints not being moved and not circulating blood to the nerves which therefore are inflamed and causing him pain. Simple. Just do these exercises. And don’t sit: sitting kills your nerves. I am skeptical of any one person who has all the answers, and that quickly. But, could he be onto something? I will try to help Dad to the exercises. Meanwhile, he is too tired and weak to anything but sit in his recliner and kill his nerves. He invited me to turn on the Christmas lights wrapped around the bushes, and asked if they had come on despite the snow. Yep, I answered, for I had wrapped every joint and plug with black electrical tape to keep out the water, as I did last year, and the year before.
Can I visit with you for a second, Rog? I know you’re up to your elbows in dishes right at the moment. Thanks for coming over to me—I couldn’t have come to you. I see everything you are doing for us. You are doing all the cooking and cleaning up after. I feel bad about that. I would like to help you cook dinner and wash the dishes. But I just can’t. And I’m getting worse. My legs hurt so bad when I try to stand, worse every day. I’ll call the doctor tomorrow and see if they have sent my spinal fluid to the Mayo clinic—it’s been two weeks already—and I’ve gotten a lot worse. I hope they find something so they can treat me. I can’t stand just sitting here and deteriorating and not knowing why, or what I can do about it. I just can’t walk at all—even with a walker my legs are too weak to walk. Look, my walker is three feet away and I can’t even get to it without you pushing it to me. I can’t help you, and I feel bad. I’m so very grateful for everything you do for your mother and me. Your meals are delicious and healthy. Tonight’s pesto chicken pasta, and that braised asparagus, were both superb. Do you think Olive Garden makes anything like that? You always have to pick up after me: when I drop something, I can’t bend over to pick it up, so there it stays, unless you pick it up for me. I love working in the yard, but you do the yardwork because I can’t. And you fix what’s broken, like the toilet valves and the sink stoppers. This year, you put up the Christmas lights for me. They look so cheerful, and I’m so happy they are up and shining and bright. Aren’t you? I just couldn’t do it. Two years ago, I did the lights myself. Last year, I helped you a little. This year, I just watched from the sidewalk, from my power wheelchair. I tried driving it on the grass, to get closer, but the wheels just sank, and I couldn’t go anywhere but back the way I’d come. I’m very grateful to you. Well, that’s all I wanted to say.
“Can I help with the turkey?” Dad inquired at 8:00 a.m., approaching slowly, barely able to stand, with his thrift store not-a-walker, which has become his favorite walker. “No,” Mom responded definitively. Of course not. She has planned this Thanksgiving turkey bake for weeks. She bought the frozen turkey a month ago, placed it in the refrigerator a week ago, and dressed it an hour ago. “Should we turn the oven on now?” he queried, wanting to helpful, but much to late in the process to be helpful. “No, the turkey isn’t going in until 9:00,” she explained. The more Dad tried to help, the more he intruded on her well-made plans. “If we turn the oven on now, it will be pre-heated by 9:00,” he ventured again. “That’s too early,” she barked. “The oven only takes ten minutes to pre-heat.” Dad slinked away slowly, unable to be helpful, because he had not made the plan and did not know the plan, and because his too-late suggestions interloped on the well-established plan. He had been good-hearted, well-meaning, but extraneous. I watched this collapsed negotiation and felt an ache. Mom and Dad have navigated their relationship for 62 years. Are they any better at it now than early on? Are the negotiations any easier than at first? Relationships are always a challenge, always a negotiation, always a struggle of overlapping egos and an accommodation of disparate wills. Even the good-hearted and well-meaning work to exhaustion nudging those two wills to one purpose. After my 27-year marriage, I was beyond tired, and I wonder still these seven years later if I would ever find the courage and strength to take up anew the dance of negotiation and compromise. Being alone is so much easier, having only occasional arguments with myself. But at times I pull out the scales and examine the platters hung on chains, weighing the ease of aloneness against the terribleness of loneliness, watching them teeter on the fulcrum of elusive equilibrium. Dad asked me to string the bushes with Christmas lights, since he cannot do it anymore, with particular colors in a particular order on particular bushes, and I invited my capable creative son John to help me. He suggested a fun variety of colors for adjacent bushes, nowhere close to Dad’s plan, but I figured Dad would not really notice, not being able to walk anywhere near that far, and rarely seeing his yard after dark. Just then Dad shot through the front door on his power wheelchair to come inspect my work. And I figured it would be better, in this case, to ask permission than forgiveness, so I intercepted him en route, told him of John’s color notion, and asked him if that would be alright. Of course, having been asked, he said yes, and sat in his chair on the sidewalk, cheering us on, expressing his excitement and gratitude. “I just love seeing Christmas lights on my bushes. This is important to me, and makes me happy.” That negotiation worked out well—I love happy endings—and did not even leave me feeling taxed. The job done, he wheeled and we walked into the house for small slices of very rich French pear almond tart.
We both arrived home at 5:00 p.m., me from work, ready to cook dinner, and Dad from the podiatrist, holding his and Mom’s Burger King “lunch.” I decided to cook dinner anyway, because I had planned it, and I wanted to eat something wonderful, and I had all the fresh ingredients, and the chicken breast was thawed. Listening to the news blaring for two hours while I cook had many times left me frustrated and depleted and sensorily overstimulated. But I finally discovered I can listen to music while I cook, with my new headphones, old fashioned and corded, for watching movies on the airplane seat back screen. Suddenly lost in Adam Young’s masterful short scores, like Apollo 11 and Project Excelsior and Mount Rushmore. Instead of squinting absurdly as if to shut out the shouting commentators, I began to smile and bop and groove as I mixed my tzatziki sauce. Chicken gyros were on the menu. Before I started cooking, Mom asked me to tell her one thing about my day at work, and I evaded, mentioning lunch with a friend, like saying “Recess” in answer to “What’s your favorite class?” I don’t know if I do not want to talk about work, or if I am simply uncomfortable talking. I am not a talker. Dad, now, he is a talker. In my conversations with Dad, he does the talking. I contribute an occasional “um hum” or “that’s interesting” or “I didn’t know that” as he expounds Christian doctrine, analyzes personalities, described his perpetual 87-year-old aches and pains (“it’s getting worse, Rog”), and worries about family members and finances. He passes the time and fills the voids with continuous intelligent talk. He dredges up the old stories: about a policeman we knew, JM, who was caught running two brothels in New Jersey and got caught and rejected an invitation to retire and was convicted and imprisoned instead; about the diminutive old German, Buntz, who died, and Dad stepped up to be executor of the estate, and the man’s coin collection (I remember it) lay stacked in short pillars on the ping-pong table in the basement, and fetched $20,000 for Buntz’s family; about the union tradesmen in 1971 who picketed the construction of our East Brunswick church building, being built by the labor of church members—Dad was the volunteer contractor—until they grew ashamed of themselves for picketing a church being built by its members, and they pitched in and wished us well with smiles; about how Jesus is good and true and trustworthy, doing more for us in every moment that we can possibly perceive or understand, though we will see it all one day. I play the role of hushed filial audience, always impressed, frequently annoyed, often sighing burdened and dismayed. I say little and am uncomfortable with the stage performance that is conversation, never heedless of how my hearers react. But when my distress is sufficiently severe, and I have gathered my courage for weeks or months, I venture to tell Mom and Dad my troubles, and I am articulate and smart despite the awful hurt, and they listen carefully and interject carefully and do not grow weary. And then we fall back into our conversational roles, and later while Dad watches the news with Mom, I listen to Adam Young and dance and cook chicken gyros with tzatziki sauce.
(Pictured above: chicken gyros in tzatziki sauce, with pita bend awkwardly buttressed.)
I arise at 6:00 a.m. (ideally), slip on my gym clothes, and slink down the stairs without a sound to sit on the stationary bicycle. I must read when I ride or I go mad with boredom and from focusing on the discomfort of hard exercise. But Dad’s room is immediately adjacent, and the light would strike him fully in the sleeping face. My headlamp is the answer. I puff as I push and as I read N.T. Wright’s New Testaments translations and commentaries, and Dad is none the wiser (though I certainly hope I am). But today the headlamp became moot, and I flipped the light switch on. We are poorer in the pocket, but enriched with new possibilities for mobility and independence. The stair lift finally has been installed. And the taste is sour-sweet. As Dad held the lever in the “up” position, the chair he sat slumped in rose slowly to the landing, pivoted 90 degrees, and carried him to the top of the staircase. He ascended with a vacant emotionless expression. Dad has new independence, even with increased weakness. Dad has improved mobility, even with increased paralysis and pain. Dad carries a dual humiliation: the marathon runner who cannot walk; sitting hunched in a chair, himself motionless, being rack-and-pinioned to the second floor. Not a time of celebration. Rather, a time of adjustment to a new tool and to a new routine, a time of relief with the decreased risk of ending his life horribly by falling down the stairs, a time to confront the fact that he will never climb the stairs again under his own power. I asked for the opportunity to talk through how bedtime would now work, not just for him, but for Mom and me also, and I thought we settled on moving toward the stair lift and toward bed at 10:30 p.m. after the nightly news. But discovered that he had settled on reading until midnight and moving himself achingly with his not-a-walker to transfer to the stair lift and push the “up” paddle, to push his heavy-duty blue walker to his bed, where he climbed in next to his sweetheart for the first time in ten long weeks, without an ounce of worry from me because of the lift. A cause for celebration after all. Four-year-old Gabe joined me in my own celebratory ride by sitting on my lap as I held the paddle in the “up” position and we rack-and-pinioned our way slowly up the stairs.
Dad sat reading volume “F” of the 1990 World Book Encyclopedia—“I haven’t read ‘F’ in some time”—and later at the dinner table expounded to Mom and me about Fahrenheit and Faulkner and Freedom. I think volume “L” might be his favorite. Whereas last week he had to ask Mom to bring this and that book or plate or newspaper to him—because he could not hold both the walker handles and the object he wanted—his new caddy allows him the independence of transporting things himself. While I searched the Deseret Industries thrift store for exercise dumbbells, which I did not find, the walker fairly stuck out its handles and introduced itself. Fifteen dollars later, I walked into the living room and declared to Dad, “This is not a walker.” He seemed fond of his floral-pattern walker, and I worried he might not welcome an interloper. I explained, “This is a food caddy and a book caddy and an anything-else caddy.” Dusty from sitting neglected in someone’s garage, I cleaned every inch of the caddy. Next day, Dad transported his books and his lunch plates without relying on Mom or me. He liked the like-new not-a-walker. In a related story, Dad announced to Mom and me in church that his wheelchair cushion was freezing his bottom—we keep the wheelchair and the memory foam cushion in the faithful Suburban, and the night before had dipped to 19 degrees Fahrenheit. I grinned and encouraged him to find consolation in not feeling too hot, for a change.
(Pictured above: Dad’s new thrift store not-a-walker caddy.)
Mom’s favorite flower is the yellow rose, and on the most momentous of the year’s days (including Mother’s Day and Mom’s birthday), Dad brings home a big bouquet of yellow roses. “What do you think of that one, Rog?” he pointed from his power cart at a bouquet of 18 yellow roses. “Let’s get it,” he encouraged without awaiting my affirmation, and I placed the flowers in the basket. He asked me what I thought about a second bouquet of muti-colored flowers, and instructed me to add it to the basket. Then a third, with roses the color of sweet aromatic ripe cantaloup, joined the other bouquets. “Are all of these for Mom?” I wondered. “Of course! It’s her birthday!” One 18-rose bouquet would tell her she is special, a second that she is very special. But a third would make a definite statement about her being supremely special, especially to him. Stuck in a chair he exits only with difficulty and pain, Dad often calls to Mom, “If you were to walk by, I would give you a hug.” Or sometimes, the more direct, “I want to hug you.” Just when I expect her to huff with the sentimentality and inconvenience, she sidles up to him, holds his hand, caresses his head, kisses his cheek, and reaffirms her love: “I love you, too, Dear.” Mom at her most tender. She held his hand today, too, in the radiology recovery room after the lumbar puncture that sucked from him two tablespoons of spinal fluid, sent to the Mayo Clinic with his blood for advanced diagnostics. Dad is hopeful that a firm diagnosis can finally be had, with a corresponding treatment. I am hopeful his fighting spirit can outlast the ticking months of decline without diagnosis. Answers bring knowledge, and with knowledge, hope. Having no answer to the mystery causes of his mystery disease is like waiting for the ice to melt in the arctic: a very long wait with an uncertain outcome of dubious value. His head still rang with singing from Mom’s birthday party the night before, at which the family gathered and sang the old campfire songs—nearly the whole book of them—we have sung around real campfires through three decades of family reunions. Old songs like “Springtime in the Rockies” (chorus lyrics below). During their occasional moments of marital tension, I tell them “I can’t take it” and I leave the room, and Dad assures me later that he has never had an argument with my mother, has never even been angry with her, which is nonsense, of course. But these are sentiments he honors and believes and embodies. My father loves and honors my mother. He seeks her counsel and her tender affections still, after 60 years of marriage. And he gives her big bouquets of yellow roses.
When it’s springtime in the Rockies,
I’m coming back to you.
Little sweetheart of the mountains,
With your bonnie eyes of blue.
Once again, I’ll say I love you,
While the birds sing all the day.
When it’s springtime in the Rockies,
In the Rockies far away.
Dad always slathers one piece of bread with mayonnaise and mustard which oozes out onto his hands and clothes when he bites into his onion-ham-and-Swiss sandwiches, until one day he saw my son John evenly spread a thin layer of mayo on one slice of bread and a thin layer of mustard on the other. That does not sound revolutionary or even noteworthy to me, but to Dad it was a revelation. He had discovered “a better sandwich.” But he was unhappy about the hand soap Mom had bought, grousing that it did not foam, but merely dribbled down the side of the bottle instead of onto his hand. Well, put your hand under the nozzle, Mom grumbled under her breath, unheard through his dead-battery hearing aids. He insisted he go shopping with us so he could pick out the “right” hand soap. I did not give him the chance: I bought some very regular foaming soap at Wal-Mart for about $1.59 each, and gave him a choice: “Which one do you want in your bathroom, the coconut-lime or the vanilla jasmine?” Buried in the New York Times, he did not reply. Later, he off-handed, “Thanks for the soap, Rog.” Fleeces are another complaint. The fireplace will not be fixed for another week, and Dad feels cold in his recliner. He quite eagerly wished to explore the fleece jackets at Big 5. They had very few, but we hung an XXL of four different styles. Dad seems incapable of buying anything for himself without insisting that Mom or I or whoever is with him first buy something for themselves, which is both sweet and annoying, Mom and I loathing shopping. When we know what we want, we do not take long reconnaissance sorties, but charge in, buy the thing, and bug out. Mom walked quickly through store, announced that the store had nothing she wanted, and sat on a bench to await the results of his fleece deliberations. Dad did choose two nice fleeces, though when we returned home he stayed in my old torn faded hoodie because of the convenience of already being in it. Dad cannot raise his foot to the running board of the Might V8, let alone to the floor. I found how to lift his leg easily from behind the knee into the car, to give him “a leg up,” after which he can hoist himself into his seat. We went through this exercise four times on our Big 5 outing, then four more on an evening jaunt to Smith’s grocery store, and again today for church, where on the last lift he discovered how to use his right hand to lift his own left leg—another victory for self-sufficiency. I began to worry about the wheelchair ramps I had built of wood, which had warped and twisted just enough to form half-inch lips perfect for tripping already compromised walkers. Being a lawyer, I was disappointed in myself for not having thought sooner of the risk management implications, and drove to Wal-Mart for a roll of neon green duct tape which now decorates the toe and crown of each ramp, nicely set off against the red-brown stain. And I baked banana cream pies for Mom’s birthday party, and finished editing my Portugal trip journal, and repaired the bathroom sink trap, and carried ham and ice cream and lima beans to the basement freezer, and mounted a grab bar in the garage to help Dad up three steps, which might as well be three mountains, and cleaned the seated walker I found at the Deseret Industries thrift store for Dad to use as a meal caddy and book caddy and other-things caddy, and ordered dress ties and a belt for Hyrum who leaves soon for Brazil, and baked the Madeiran Bolo do Caco with sweet potato and garlic. I am a doer, always moving briskly from one job to the next, getting a lot done. But I rarely feel satisfied, and often feel irritable, rarely savoring the things accomplished. The doing of the thing has become more important than the thing being done, it seemed. After checking off an arms-length of boxes, I collapse, tired and tense and wanting to do nothing more. I could stand to slow down, to enjoy the doing of the thing rather than the mere checking of the box. I would, perhaps, relish each accomplishment. I confess that the banana cream pies did look wonderfully delicious.
(Pictured above: Bolo do Caco, traditional on the island of Madeira, a flat cake with sweet potato mixed in with the dough, brushed with garlic parsley butter.)
The bushes are rounded, the water drained from the coiled garden hoses. The witches and scarecrows have moved into the dark basement, while the pilgrim couple watches the neighborhood from the front porch. The first snow fell before the leaves fell, and now the leaves have fallen, too. I raked mounds of big yellow sweet gum leaves from the gutter and across the sidewalk onto the lawn, as Dad wished, so he could vacuum them up with the riding mower. But the piles of leaves were much too deep for the mower. Advancing along the sidewalk, I raked the leaves into a neat windrow, as if for bailing, like hay, and each sweep of leaves onto the windrow rustled with the sound of small waves cresting and falling to lap gently at wet sand on a beach. I could hear the ocean in the raking of five-pointed leaves. The truth is, I expect God to bless me. I believe in his generosity. I believe in his intention to enrich my life, even if with adversity. I believe he will bless every human being with exactly those blessings that human needs in each moment for that human’s spiritual progress to the extent of that human’s willingness and ability to receive. The arrival of providence does not bring an accompanying ease, but rather an urgent invitation to be more than we have been. I believe that as I search for opportunities to enrich the lives of others, those opportunities will be provided, enriching my life in return. I believe God wants me and my children and all his human children to succeed, and will help us as we allow. Success, of course, as he defines, not as I define. He may bless me with hardship (he will bless me with hardship) just as he will bless me to grow through and heal from hardship, improving and ennobling in the process. I am learning that God is trustworthy. And I am learning, so slowly, to listen to his voice as he instructs me and guides me to love and to forgive and to serve. I hear his voice in the raking windrows of sweetgum leaves. And I left plenty of loose leaves to be sucked up by the lawn mower Dad managed to clamber onto and ride triumphantly and humbly across the lawn for the last time this year.
“I’m cold,” I heard Dad protest to Mom, who suggested he put on something warm. I retrieved his sweatshirt from his office/bedroom and helped him find the arms. Mom draped a crocheted blanket over him. Normally, Dad, when cold, would ask the leading rhetorical question, “Should we turn on the fireplace?” But the fireplace quit, despite the pilot light still burning—I was glad I smelled no gas—so we guessed a bad switch. Out of fear of dying unpleasantly, I do not tinker with gas plumbing or electrical wiring, so we called Adam’s HVAC, who can come in two weeks. Warmed up and growing hot, Dad cast off his blanket and shuffled to his office to write an email to a grandchild. Sitting in his office chair, it suddenly sank on failed hydraulics to its lowest setting, and he could not get up from the chair without help, and I could not repair the chair. While I baked cored apples filled with brown sugar, Splenda, and butter last week, I noticed the oven not heating well, and saw a molten metal bubble forming on the element. When the box from Amazon came, I switched the breaker to “off” (that I will do) and installed the new element, though the old wiring needed coaxing to fit the new leads. And I twisted and bent my glasses, because I put them on my bed and sat on them squarely. Things break. Sometimes they can be fixed. Dad’s new physical therapist, Jerry, came one evening with his New Zealand speak to do therapy, and I learned why therapists order, “Up up up!” when having Dad stand, so that he engages his hip flexors and quadriceps so he can stand tall and take full steps and not a mere forward-leaning controlled-fall shuffle. Jerry was gentle and patient and caring—I am always grateful for gentle, patient, caring people, in any profession. But later Dad complained to me about how weak he was, that this was his worst day since he left the rehab center a month ago. Such pronouncements sag my spirits, and I fret over any number of imagined impending crises. Yeah, things break. I pushed Dad in his wheelchair into the chapel Sunday morning—we were late, and I felt unhappy about being late—and Dad waved like teen royalty on a parade float as many congregants waved and smiled at him as we rolled down the aisle to the front handicapped pew. If his legs will not work, the wheelchair works wonderfully well. But I did not wave or smile—I was just the driver. My mayor’s mother passed away unexpectedly from a random blood clot lodged in her heart, and I expressed my genuine condolences with a little ornamental pepper plant looking like a bonsai Christmas tree with tiny red lights. I had known my boss’ mother, enjoyed meals and jokes, and I liked her and felt sad she was gone. Old people go, frequently, and I came home that night with renewed gratitude for my parents, an increased measure of tenderness and patience, for they are sweet and loving and generous, and I have them still. Things break, and we fix them, when we can, and continue onward.
As a young man of 20, I spent two years living in Portugal, as a missionary for the Church of Jesus Christ of Latter-day Saints, in a white shirt and tie and pocket name plaque, teaching the Gospel to whoever would listen, and buttressing the new members of our young congregations. I became fluent in the beautiful Portuguese language, and I delighted in the clang of trolly cars and in the countryside of olive groves and vineyards, windmills and farms, cork trees and salt air blown in off the sea. I returned to the United States a changed man, having strengthened my convictions, and having sacrificed and labored on behalf of these people who I had come to love. Now 58, I was contemplating how I could strengthen my connection with my 16-year-old daughter, who is moving so quickly toward womanhood, who all to soon will fling herself into adulthood, and I thought, maybe a trip somewhere. I wanted meaning, meaning and beauty, and a bond we would share our whole lives. With those parameters, the solution soon became apparent—Portugal. Between them, my sisters Jeanette and Sarah spent every night I was gone caring for Mom and Dad, making the trip possible for everyone. After months of planning, our threesome launched, and trapsing one week in bustling chaotic Lisbon and one week on the idyllic island of Madeira, both my former fields of missionary labor. (Hannah invited her older brother to tag along, and he added so much to the adventure.) We saw, of course, Lisbon’s compulsory tourist sights. We sought out the traditional pastries (pasteis de nata were our favorite) and historic neighborhoods (like the narrow winding cobbled streets of Alfama on the capitol city hillside) and authentic working-class restaurants (where we ate sauteed cuttlefish our first night). Madeira’s scenery is achingly beautiful, and we explored the whole mountainous island, its coasts and peaks, is black-rock beaches and high scenic overlooks, its fruit markets and terraced vineyards. Most precious of all, I reunited with the first member of my Church on Madeira—Amélia, now 87 years old: cheerful, feisty, and lonely—at whose house the first Church meetings were held, and the small oval inlaid wood table where the first sacramental emblems were blessed and distributed to the just-as-small congregation. We visited her three times, telling the old stories, laughing at old blunders, baking banana bread, preparing a Sunday meal for her and her family, taking pictures, hugging, weeping at parting. Visiting Amélia meant infinitely more than visiting the gorgeous cathedrals and ancient castles, though we saw plenty of those, too. And on the long flight home, I contemplated how this had been a monumental trip for Hyrum and Hannah (and for me). It changed their lives, their perspectives of the world and their place in it, their perspectives of their parents and family and how they fit in, their perspectives of their Church and of missionary work and of the power of forging relationships of faith in the mission field through genuine loving labor, and the deep and eternal nature of those bonds. My children may not fully comprehend the power of their adventure, the transformational power, for a long time, perhaps not until they take their own children to their fields of mission labor a generation after. That is how it is with the generations, each learning what it can from the one before, and then teaching what it can to the next: “I lived right over there. I walked this street every day. This is what I often ate: half of a grilled chicken brushed with hot pepper oil; stewed squid; pasteis de bacalhau, pasteis de nata, papo seco bread with creamy cheese and quince marmelada. Look at the cobblestone streets and mosaic stone sidewalks, and up there the Castelo de São Jorge, and over there Cristo Rei….” And then to hear Hyrum bubble over, “I am so excited!” for his own imminent missionary service in Brazil. And then to hear Hannah effuse, “Dad, thank you so much!”
(Pictured above: the north shore of the island of Madeira.)
My relative mood seems tied directly to Dad’s relative strength, and today has been his weakest in the eight days since his homecoming, too reminiscent of pre-hospital days, days of barely standing and of barely walking and of legs quivering. “Up up up!” I commanded, using physical therapy’s compulsory three-times repetition (is that diacope, palilalia, or anaphora?). Straighten your legs. Pull your butt in. Chest out. Chin up. All this harassment to make standing and walking as safe and easy as possible. Leaning over a walker is never safe, for the walker can run away, leaving its master behind on the floor. My spirits had sunk with his sinking strength. But Jeanette and I pushed Mom in her wheelchair as Dad motored himself very slowly down the street—until I showed him how to switch from “slow” to “moderate” (there is no “fast” in a power wheelchair), allowing us to walk along at a normal pace. The Wasatch mountains looked powerfully but benignly down upon us, boasting a vast patched skirt of oranges and reds from the gambel oaks and mountain maples transitioning toward winter. And Mom and I assembled and painted our witch craft kits—all cute and no scary—I added no warts but mere freckles to her nose—and added them to the decorated front porch, along with a witch’s broom I fortuitously forgot to put away yesterday, and purple mums, and pumpkins newly painted by Jeanette and Amy, next to the wheelchair ramps now stained and sealed as well as sturdy. And we sat on the back patio in the cool evening air, so pleasant on the skin, discussing already our traditional family Christmas Eve gathering, the shadow of the sinking sun climbing up the mountain’s skirt, the vibrancy of red and orange leaves delighting in matching sunset hues, both fading now to the subdued, the sleepy.
Despite Dad’s continuing profound weakness, I see how much he has improved since his hospital admittance a short thirty days ago, when he was too weak to talk or to eat or to raise a finger or toe, when his light was almost extinguished, when he wept to see his siblings, to whisper “we have never been angry with one another,” to sigh his life’s great spiritual thoughts and convictions perhaps one last time, witnessing of Jesus and the process of atonement He works in our hearts and minds every moment of every day for every human being—to be more kind and humble and teachable, generous and self-sacrificing and good, forgiving and loving and meek—working not only to forgive sin and wipe away tears but to uplift and ennoble and exalt: that is Dad’s Savior. And he told us again about the old dream, when he stood observing a great green grassy field filled with babies who crawled and played and sat looking around as babies do, when a great snake emerged from a hidden hole and coiled itself around a defenseless child and slithered back toward the dark hole. Whereupon the Dad in the dream ran to attack the serpent, to rescue the child, to beat the snake back into its hole, to feel the relief of avoided tragedy and the joyful energy of victory. But another snake slithered from another hole and grabbed another baby, and Dad reenacted the rescue. And another snake and another battle. And a growing fatigue. And a growing awareness that the field was infested and the babies so vulnerable. Then waking into the questions of the meaning of such dreams where the feelings are real and the stakes are real and high, and of whether the field could ever be rid of serpents, and of whether he were strong enough to persevere in battle knowing that to rest is to condemn the defenseless. Then glimpsing an image of a small oil lamp lighted and placed atop a peach bushel on a hill overlooking a green grassy field. In the hospital, I watched Dad’s life-light flicker, knowing he has done his work tirelessly and well, that many many serpents have taken his beating, and many many children have been rescued, that the disciple had helped the Master do His Kingdom-work. So now he fights on, and Victor has repaired the sprinkler pipe for station 7, and Baxter measured and photographed the staircase and took the lift deposit, and PT Virgilio declared the yellow band too flimsy and gave Dad both a blue and a black, and Cecilia helped him up the stairs for a shower, and Harold the wheelchair sits in a corner while the flower-print walker still works, and Dr. Hoffman said limply “glad you survived.” Dad wondered all afternoon about that word, “survived.” Yes, he is surviving, not cured, not healed, not strong, but surviving, his lamp still full and aflame, for another great-grandchild, also named Owen, who arrived today from the heavens to crawl and giggle in the grass under Dad’s acute and ready eye.
Pictured above: the view of the mountain from Dad’s and Mom’s kitchen, with the oak and maple turning red.
Eleven o’clock at night, and Dad’s reading light burned above his recliner, with Dad comfortably settled in, intently focused on a book. I felt very tired and wanted to be in bed an hour before, what with my 6:00 a.m. wake time routine. Voiced echoes of “back to normal” and “climb the stairs” raced chaotically in my brain. Daring to interrupt his reading, I asked carefully if we could have a conversation. “Of course,” he said pleasantly, plainly happy to be home. I explained to him how frightened I felt of him attempting to climb the stairs in the middle of the night, and how traumatized I felt from weeks of pre-hospital hauling him up the stairs with a gate belt and easing him down the stairs with the gate belt (he does not remember this), and I asked him, please, for his commitment to not climb the stairs tonight, and suggested now would be an excellent time to go to sleep, when Mom and I were going to sleep, being both so tired, so we did not need to worry about him moving safely around in the night. He had come home just that day, after all. “I am going to climb the stairs,” he asserted with confidence, “but I will not do it tonight. I know my limits, and I am not going to be stupid.” “Stupid” is a word that simply could never ever describe Dad. “Super-intelligent,” yes. “Super-determined,” absolutely. But I have watched Dad dozens of times push himself beyond his capacity, with the predictable collapses that followed, and wondered if he really did know his limits, or rather knew what his limits used to be, or what he wanted them to be. Still, physical therapists had been working him hard, and the idea of him being newly cognizant of his current limits was plausible. With no further argument, Dad shuffled to his downstairs bedroom with a “good-night,” his book and a bag of mixed nuts in hand, while I stepped up the stairs. The next morning, a Sunday, with the new CNA’s arrival, Dad expressed his understandable desire for a shower, which meant, of course, climbing the stairs. I sat down with him again and practically yelled at him out of my fear of his falling down the stairs. He deferred (after the CNA demurred), and accepted a sponge bath instead. But on Monday, day three at home, after I left for work, the CNA helped him up the stairs to the shower—how wonderful and liberating that shower must have felt—and back down again, without incident, and I was glad I had not been there, and I was glad the CNA had felt sufficiently comfortable helping him, and that the story for that day had a happy ending. True to his word, he indicated to the caregiver on Tuesday that he felt too weak to attempt the stairs. And with all this my tension eased somewhat. But I knew, as I have not known before, that now was the time to install the obscenely-expensive stair lift, and that only with the stair lift could we eliminate the issue of stair climbing and substitute constant dread and risk with comfort and ease and safety and freedom and independence, if not accomplishment. As I myself plopped down the steps to discuss stair lifts with Mom and Dad, grasping the wood handrail, my hand suddenly slipped where the housecleaner had oiled the wood, and I caught myself without falling, and I pictured Mom grasping the railing and leaning out over the stairs to let her arthritic legs follow after, and I pictured Mom’s hand slipping on the greasy handrail and Mom going down, down, the stairs with nothing to stop her, and I knew the stair lift was her safe solution as well. Straightaway, I ran for a spray bottle of kitchen degreaser and wiped the handrail squeaky grippy clean.
Don’t tell him about the big leak, I exhorted myself. Victor will fix it on Monday. But Dad is home, at the end of a month of hospitalization and rehabilitation, and will want to know why Victor is digging up the back yard. So, I told him, at the end of his first day home, and that Victor and I knew exactly the problem, and it would be fixed on Monday. Dad is home. He drove his power wheelchair slowly up the smooth and sturdy ramps on a 5:1 slope, drove his chair through the front door and into the house and directly to his recliner. “Those ramps are great, Rog. Smooth and sturdy, and perfect.” In his institution rooms, after the visitors had left, he stared at the ceiling through the long nights, fighting off loneliness and despondency. Daily daytime visits from family and former missionaries and church members—and especially from Mom—had injected him with love and with hope, had fortified him against the dark nights. In his recliner, he gazed slowly around the room, taking in the familiar surroundings, which looked different now, somehow, feeling an immense swelling gratitude for “every window and wall,” for the heavy scrolled wood dining table and hutch that he and Mom had bought in 1975 for $700 from a newly-divorced mother who need cash, now, and for the painting by Greason of a pre-industrial French countryside at dusk, for the many lamps that light his late-night reading, for the windows and chairs, for the front-door which had opened for his return, for Mom’s needlepoint of Noah and his wife and the animals and the ark, and for the kitchen counter laden with fresh fruit, the gratitude of survivors, of soldiers who nearly lost, but somehow managed to not, life’s latest battle, finding everything the same, but different, seeing with the eyes of someone returning home from war. So, I did not want to tell him how I had begun to suspect a sprinkler problem, when pressures dipped, and when Station 7 was dry, and knew for sure when I stepped in two inches of water in the back yard, and saw the mat of grass rising, floating on the pond growing underneath, and turned the valve to off. But I chose a good moment, and told him, and he was glad Victor was coming on Monday to fix it. His hospital bed arrived in time to learn to raise the head and knees, to raise the whole bed, and to make the bed with sheets and blankets, and to add to the décor the laminated magazine page with the painting of Jesus which he had taped to the rehabilitation bed floorboard, which visage, together with the afterglow of the visits, helped him endure intact the interminable nights. Sarah made him motor down the ramps for a walk in the cool darkness of the autumn evening, and then back up, praising again my solid and sturdy ramps. He looked at me with a twinkle and vowed, “I’m going to climb the stairs”—and I said we were going to have a conversation about that (in other words, no, you’re not)—“but not today.”
Sarah introduced me to Jennifer, who explained the caregiver services her staff will provide every morning from 9:30 to 11:30, seven days a week—help Dad get out of bed, get showered and dried and dressed, get his Cheerios-and-blueberry breakfast, get him settled in his recliner with the newspaper and his books, wipe down the shower, empty and clean the commode, take out the trash, wash the dirty clothes, clean up after breakfast, prepare his lunch for later, help him pull weeds and trim bushes, get him ready for church on Sundays, and carry on conversation. Your staff will do all that for him? “Sparking lives” is what her company pledges—helping Dad find the “spark” in a life heavy with deepening disability. My own heaviness eased a bit with the hope of burdens shared. Mom has been Dad’s spark these long weeks, spending hours with him every single day, smuggling hamburgers and fries, reading Trivial Pursuit questions, listening to his complaints and discomforts, patting and rubbing his hands, kissing him good-night, and calling “Good-night, Dear” on her way out the door every night. I do not recall ever seeing Mom and Dad kiss as I was growing up, or later, or now. But she has insisted on delivering to her husband a tender and definite kiss on the mouth every night. Jeanette and Sarah and Carolyn and Megan have been sparks of pleasant light with their frequent visits, bringing comfort and cheer and strength and love. I hope cooking nice dinners will sparkle their days, meals they can look forward to and enjoy. Dad’s last two dinners at the rehab facility—if one can call them meals at all—consisted of two bologna and cheese sliders one night, and two boiled hot dogs on buns the next. Having enjoyed a clandestine bacon-burger shortly before dinner, Dad ate only one hot dog, and gave the other to Mom, which she wrapped in a paper towel and lodged in her purse for later. Cooking starts tomorrow because Dad comes home tomorrow; not that I did not cook for Mom—we enjoyed steamed vegetables and hard-boiled eggs many evenings—light, simple, and healthy meals (making allowance for bowls of chocolate after-dinner ice cream). For Dad to ride his power wheelchair from the van into the house, I needed to supply wheelchair ramps, two to hurdle the porch and one to access the drop-step living room. No suitable ramps could be had on KSL Classifieds or on Facebook Marketplace or at Harbor Freight—all suggested to me by the wheelchair supplier—and I refused to spend $559 each from the grab bar vendor—so I resolved to make the ramps myself. I sketched a simple design and made a materials list. With no workshop of my own, I appreciated Lowe’s for cutting my lumber to specs at no additional cost. I assembled the ramps at home, pushing through moments of tool-frustration and self-doubt, and they are sturdy and smooth and precise. If Dad wants, we can paint over the bare plywood later. For now, when he comes home, he will be able to motor himself from the transport van (Sarah is his chauffeur) into the house, able to reach every corner of the ground floor. He can read as long as he wants in his living room recliner, and then motor himself to his hospital bed. But if wants to go upstairs to his own room and bed, his familiar comfortable bed, the deadline for his staircase climb will be 10 p.m. sharp.
For a second time, United Health Care served a termination notice, ending Dad’s care the next day. Sarah scrambled to assemble her second appeal, bolstered by Dad’s nurse and physical therapist who averred he “would benefit from continued skilled therapy to maximize patient’s independence at home and reduce rehospitalization risk.” And for the second time the appeal was granted only after Dad was to have been expelled. But we only need two more days, and then he will be coming home. Not to his own bed, sadly, but to a hospital bed on the main floor, in the office and library we transformed into a bedroom, still finding room for a computer—Mom’s wedding portrait sits framed on the desk these 60 years later—and a shelf full of his favorite books, with paintings of Jesus on the walls. The bed will come in two days, and I will assemble the commode tomorrow. In the meantime, Dad has worked hard pushing the walker down the hall and climbing up and down two railed stairs, after which he is exhausted for hours. Still, he makes incremental progress every day. With new hope, lost for a time, he has been hinting stubbornly that he anticipates settling back into his old-friend habits of reading late into the night and climbing the stairs alone at 3:00 a.m. to fall into bed, and arising at 10:00 a.m. to shower and dress and to brave the stairs and eat breakfast at noon. And my mind shudders from the memories of pulling him up the stairs with a belt and lifting him off the toilet and hoisting him into bed, repeatedly, and his trembling and groaning and collapsing under me, and the thought of continuing fills me with dread and frustration and my own trembling, and I want to scream that I’m not doing this anymore!!! In my mind I have been rehearsing speeches to him about how his unhealthy night-owl habits not only weaken him but frighten and exhaust Mom and me, and how the thought of picking up where we left off the day of the ambulance ride, as if that ride had never happened, and thinking absurdly that I’m all better now when he almost died and he still barely can move and each step alone on the stairs is a tooth-clenching death dare. The extent of Dad’s recovery is remarkable; I had felt the reaper breathing foully on me from too close. Still, the thought of Dad’s homecoming has brought me no joy, only stress and anxiety and the phantom smell of raw onions, and visions of mayonnaise smeared on the kitchen counter, and the awful wait as Dad somehow pulls himself slowly up 16 stairs at 3:00 in the morning when I should be sleeping soundly but cannot for knowing how impossibly difficult each stair is to step up, and how easily he could misstep and tumble to the landing in a crumpled pile, mooting in three seconds the so-long month of pains and efforts, setbacks and struggles, fears and tearful longings, and the small but hard-won victories during four weeks of hospitalization and convalescence—all that for nothing, all that for the pride of doing it my way.
(Pictured above, Dad’s office-turned-bedroom awaiting his hospital bed, and him.)
At church I was besieged by men and women asking me “How’s your dad?” and asking Mom “How’s Nelson?” and the judgmental part of me—a too-big portion—wanted to say that if they really cared they would telephone personally (not text) or stop by the house, make some kind of effort, instead of waiting until we are sitting in church, preparing for the service, to dart in and nibble on the news like a tame piranha on a fried chicken leg. But I look into their eyes and see their love and sincerity, and I answer their questions—Dad is getting a little stronger and we hope to bring him home next weekend—and I ask my God and my Lord to both forgive me my trespasses. After all, church is our social center, and our cultural conditioning makes us most comfortable making inquiries at church. We tell them we have rearranged Dad’s office-library into a bedroom, and that the hospital bed is scheduled for delivery next Saturday morning, but we made room for one bookshelf with his favorite religion books and histories and biographies. And I do not tell them (nor did I tell Mom or Dad) that the insurance company gave us notice they were going to release (evict) Dad yesterday, though he cannot yet care for himself at home, and that Sarah appealed the typical too-early discharge (eviction), and won the appeal and an extra week’s therapy and care. I did not tell Mom and Dad because it would have upset them needlessly, what with the pending appeal becoming the approved appeal, mooting the whole question, the threatened early departure suddenly irrelevant. Dad is still very unwell, and though he tells the world he is “marvelously well, thank you,” he whispers to us he is still so sick. Mom will visit Dad today for the 18th consecutive day, and I am her driver, in her royal blue Subaru Legacy. But first Burke has stopped by in his new BMW convertible to take Mom for a spin through the neighborhoods, the wind in her white hair, her hands raised high as they take off with a muscly roar down the street, and I feel grateful for the Burkes of the world, who look out for the little people, whether driving BMWs or Subarus or Fords.
(Pictured above, Dad’s office-library turned bedroom, awaiting the hospital bed, with room still for his computer desk and one very full bookshelf.)
One might suppose that Dad, as a rule, feels good about his life, for whenever anyone asks him How are you? he responds, “I’m marvelously well, thank you.” Living so close to him as I have, I know this response to be a well-studied lie. How can he truthfully lie helpless in his hospital bed and truthfully represent himself as being marvelously well? Not for several decades did I realize that Dad is not necessarily doing well all the time, and at times might be feeling great distress, and that his rote response manifests an intentional positivity in the face of serious adversity. Mike, the physical therapist, brisked into the room with a How are you today, Nelson? And Dad whispered hoarsely, I’m marvelously well, thank you. Continue reading
Dad tore the glossy page from the Church magazine (the Liahona) and had Mom tape it to the wall of Dad’s rehab center room. But in the shadow of the armoire, the painting hung disappointingly obscured. “I made a mistake, Rog,” he mourned. “I can’t see Him. I should have left the picture in the magazine.” Without asking, I simply removed the picture from the wall and taped it to the armoire door, in the room’s full light, and Dad’s face lit up with pleasure and relief. “That’s so much better. Thank you, Rog.” The picture was a reproduction of Dad’s favorite painting of Jesus, who Dad adores and knows as his personal Savior and Friend. “You know, Dad, people are praying for you, in the name of Jesus, all over the world.” I listed some of the locations where friends and families assured me they were praying for Dad, and for Mom, including in the Church’s sacred temples: Utah, New Jersey, Colorado, Nevada, Washington, Idaho, Wyoming, Illinois, Virginia, California, and Texas; Cardston, Alberta, Canada; Brazil and Portugal. Next door and down the street. Larry texted me: “I just paused and offered up a prayer for your dad, your mom, and you. Please let them know we love them.” And at church, numerous people have shown genuine concern, and have reassured us with, “Nelson is in our prayers.” Hundreds of people are praying from the soul spaces of love and faith, in the name of the Divine, for Dad. I have felt too fatigued to pray much formally, to kneel and bow and form words in the normal pattern. Some would say I do not pray. But I do. I am a walking prayer, a driving prayer, a working prayer, a mealtime prayer, a mountain bike prayer, a hospital bedside prayer. At night, too tired and heavy to remain vertical, I contemplate the ceiling from my bed and open my heart and mind to the Divine, casting my will upward, not really caring if I connect, but just opening myself and giving myself to Whoever orders the vast Universe, offering up what little I have to give, giving thanks that Christ’s Kingdom continues coming, giving thanks for the privilege of being a small part of the Kingdom’s growing, using no words, being simply a willing consciousness. “Prayer is the soul’s sincere desire / Uttered or unexpressed.” (See Hymns of The Church of Jesus Christ of Latter-day Saints, #145. Text by James Montgomery, 1771-1854.)
They came from Texas to Utah, and wanted to stop by the rehab center and see Dad. They had met each other in 1972 in São Paulo, Brazil, and had met Dad then, too, when they were 21 and he was 36, the President of the Brazil South Central Mission, their President. They were serving as volunteer youth missionaries for The Church of Jesus Christ of Latter-day Saints (misnomered “Mormons”), preaching the Gospel of Jesus and of faith and repentance and baptism and of Christ’s Church restored in 1820 through the prophet Joseph Smith. They met me, too, in 1972, but I was only eight. I had met Steve and Dorothy and the others many times at mission reunions in Mom’s and Dad’s basement great room, with their name tags and paunches and gray hair (or no hair), with a taste for mousse de maracujá (passion fruit mousse) and guaraná (Brazilian soft drink) and feijoada (Brazil’s black-bean stew), and with love in their hearts for Mom and Dad and for the people of Brazil, and with still-vivid memories of their formative experiences with a benevolent personal living God. Dad served a mission to Brazil in the 1950s. I accepted a mission call to Portugal in 1983. And my children were sent to Oklahoma and Florida and South Korea and Mozambique and Brazil. Missionary service is not compulsory in my Church, but every young man and woman is invited to serve. We dedicated two years of our time, energies, and resources to share our convictions about God’s plan for the eternal happiness of humanity. Covid-19 ended Mom’s and Dad’s annual reunions, and we felt a new emptiness, one of numerous new voids compelled by the pandemic. But Larry emailed the group, and a Zoom mission reunion was conceived. Mom and Dad sat at their kitchen table, looking at my laptop screen, as dozens of thumbnails popped up, of their beloved former missionaries, with whom they had labored, with whom they had been reviled, with whom they had formed strong bonds of caring, who now listened as Dad declared his convictions, evoked their common tender memories, and expressed to them his love (as did Mom). And at the click of an icon they were gone, and we sat on the sofas, Mom and Dad and me, and reminisced about Brazil, and about how at mission reunions I had led them all in the old Caymmi songs: Maracangalha (1957): a young man so excited to attend a party in the next town; Coqueiro de Itapoã (1959): a youth missing the sand and the waves and the coconut palms and the beautiful morenas of Itapoã.
The pace of progress crawls and stalls, and we wonder at times if there is any hope for his healing or merely the painful prolonged waiting for the inevitable end. “I don’t know if your dad will ever be able to come home again,” Mom softly wept to me, bravely facing possibilities of future truth. In the skilled nursing facility, Dad wondered similar thoughts, whether he would ever leave his hospital bed, if his suddenly imprisoned legs would ever find a measure of old freedom. For non-medicals like me, “auto immune response” is a vague and strange euphemism for individual internal corporal civil war, the body’s immune system besieging and dismantling other vital systems and organs it is meant to protect. He sits in a reclining bed unable to do anything but to exist, and to think long about life, and to sleep. He wakes from post-visitor exhaustion and is so relieved to find Jeanette still in his room, at night, and reaches for her reassuring hand to squeeze before she leaves. “I’m so glad you’re here. I feel very sad. I wonder if there is any hope of ever getting better.” Though aged 87, he does not feel old. He says he is not ready to go. “Well, Dad, we must find something to hope for,” I remarked, like knowing that with a power wheelchair he will have full and easy run of the main floor, most importantly of fridge and pantry—that is something to hope for—and knowing that in his power wheelchair he can roam the yard with his hoe and rake and weed-picker and work in the yard as long as he wishes—that is something to hope for—and knowing that he can back his reclining wheelchair into his recliner rocker space, under his white spindle lamp, under his favorite French countryside painting, with his books and mixed nuts and sugar-free chocolate chips and a tall glass of ice water—that is something to hope for—and knowing that if he works as hard as his feeble body can work to regain some little strength, he can leave the hospitals and facilities and centers, he can come home, for however much time is left—that is something to hope for—and knowing that though the world may no longer think it needs his strength and wisdom, he remains very much needed by his sweetheart and his children and his grandchildren and his expanding posterity who all look to him with adoration and tenderness—that is something to hope for, both for you and for me—because I need something to hope for, too.
Vases of aromatic garden flowers. A gallon of two-percent milk. Enormous sweet grapes on a plate. Crayon-colored cards for dear Brother Baker from Church primary children who don’t know who he is but still care. Burger King Whopper and fries: Mom’s favorite. Rides to the hospital from women who know the way well—a beloved son with bacterial meningitis; a husband who fell from a second-story ladder; an amputation gone wrong—and visiting along the way. Baked chicken salad wrapped in puff pastry. Soups and a salad. Giant chocolate chip muffins. A man on a bicycle checks my sprinkler leak, and will get back to me. Chocolate-caramel brownies—oh my. Our names prayed over in temples across the world. Smiles, and waves, and inquiries: How’s Nelson? Well-wishes. A quiet house. Love, and hope for tomorrow.
Visiting hours are 9 to 9, which seems quite generous. The other rule, however, is not. Only two visitors at a time. Despite the three-person couch and other chairs and the spacious room. So, my saintly 83-year-old mother, who has gone to the hospital for eight days straight, must leave her sick husband’s side for two neighbors, or two siblings, or two children, or two grandchildren to visit. Or Mom stays in the room and only one other visitor is permitted. I had seen the rule on signs in the elevator, nursing station, and the patient room doors. But since none of the staff had troubled us over three visitors, or four, for five consecutive days, and since we are quiet, peaceful, clean, and helpful people, I thought perhaps the hospital did not mind so much. Not so. On day six Big Meanie nurse instructed all but two family members to leave. It’s IMC’s rule. I did not argue or accuse or abuse, but I did inquire, in an effort to understand, and to explore flexibility. Did it make a difference that I am Dad’s attorney in fact and have his advanced directive in my briefcase? I’m sorry, but no. Did it change things if I am the authorized physician contact for when the doctors stop by to explain their diagnostic and treatment efforts? No. What about the fact that we are all Covid-19 vaccinated and boosted? No. Did it make a difference if immediate family were gathered bedside to perform my Church’s religious ceremony of invoking the power of faith and pronouncing a blessing of health and healing on the sick? No, and that isn’t the case here anyway. Well, it was the case when Dad’s three siblings and their spouses, and my brother and sister and me, gathered around him to give him such a blessing. A beautiful thing for loving, spiritual family to do, perhaps the last opportunity to do such a thing for Dad, to offer this expression of faith and hope and love, and perhaps of good-bye. Did you know that we have been very helpful to the nursing and therapy staff, adjusting the bed angle and height, feeding Dad, sponging him off, helping slide him head-ward when he had slipped down the sloping mattress, brushing his teeth, shaving his chin, helping him stand, pivot, transfer, use the toilet, take a seated shower, stand, pivot, transfer back to the bed? For all her strength and grace and experience, Heather could not have done it all without us, and thanked us for our contribution and learned expertise. So, I left Dad’s room and walked down the hall to sit uselessly on a cracked and stained sofa, where I could not help or comfort or observe. I felt angry at the rule, and thought it inhumane—a bureaucratic pronouncement out of context. (I learned later that the two-visitor limitation was not IMC policy, which was, instead: Maximum number of visitors at the bedside is determined at the discretion of the care team. Discretion was allowed, after all.) I felt angry at Big Meanie nurse who enforced the rule so militantly. And after two days she went off shift and the familiar smiling nursing staff welcomed us all back to be helpful and complimentary and appreciative. To be present. For our father. For each other.
(Photo from intermountainhealthcare.org, use pursuant to the fair use doctrine.)
The text came at 2:32 a.m. “I am sick. Siiiiiick.” Vomiting. Chills. Sweats. Body Aches. Withering weakness. He thought it might be food poisoning from the cold cuts or hard-boiled eggs sitting in the hospital cafeteria cartons for who know how long. Or a bug. Either way, he was down for the count. The next night, Mom threw up, but she did not get sick, just a bit tired. I drove Steve to the airport Sunday morning, glad he was better, glad Mom did not get sick, glad I had escaped. But about 2:45 a.m. the next night the scene replayed itself, and I was siiiiiick. I was useless to the world, no help to anyone. I just hunkered down under the covers, chugged Pepto Bismol, slept, tried to watch movies, tried to stay hydrated, tried to keep the family abreast, tried to stay abreast. The hospital had sent us home with a norovirus. A gift. A joke. Sarah has held down the hospital fort, with Carolyn and Megan for company, even though her own father-in-law passed away in-between-times. She goes back to work tomorrow, at the facility to which Dad will be moved, perhaps tomorrow. Jeanette flies in the next day to take a long shift. We are all managing, if barely. And it is enough.
“It’s a joke!” Dad has said to me many times. He drops something on the floor and stares at it, unable to bend to pick it up. “It’s a joke!” He relies on Mom to pull on his socks and pant legs, to straighten his shirt collar and do up the buttons. “It’s a joke!” The push mower pulls him faster than he can follow and he falls, but not, of course, until he has reached the concrete driveway. “It’s all a big joke!” I have never thought these jokes particularly funny, but I can certainly recognize the ironies. And at the hospital he found new things to declare a joke, like when he couldn’t hold his spoon and we fed him his mashed potatoes and meatloaf. A joke. And the newest: radiculitis. Encephalitis, as I understand it, is a swelling of the brain. Meningitis, they tell me, is a swelling of the membranes protecting the brain and spinal column. They are dangerous and painful, caused by invading vectors, bacteria or virus. They can kill you. But all of Dad’s spinal fluid tests were negative for both. Had the cause been bacteriological, antibiotics would have been the treatment. Had the cause been viral, merely time and careful attention. Now a new theory, the meningitis and encephalitis are not caused from the outside, but from the inside, from some internal mechanism creating the inflammation in the membranes and nerves, radiating out from the central nervous system. Radiculitis. “Guess what?” Dad quipped. “I have ridiculitis! It all a joke! Ridiculous! My central nervous system is trying to kill me! A big joke!” And he laughed. I was glad he could summon the mental and physical wherewithal to laugh. They injected strong steroids for three days, and he began to move again, and raise his legs and feet, and feed himself, and engage intellectually and coherently with the physicians and therapists. And to be willful and stubborn again.
I made the mistake of characterizing Steven’s help as heroic. With a look of alarm, he disclaimed any hint of heroism. Even before his reaction, I realized that “heroic” was not the right word. “You’re a hero” is a lazy cliché, and I should have made an effort to find more accurate words. He supplied them for me: “I was just glad to have been useful.” I had watched him use his own feet to move Dad’s feet up the stairs and across the room to the bathroom or bed. I had watched him help Dad shower in the hospital, passing dallops of soap to Dad’s own hands, and washing Dad’s inaccessible extremities. Nurse Chloe had gently adhered special heel bandages because Dad’s heels pressing into the mattress, hour upon hour, day after day, had begun to blister his skin, and we worried the tissue would die from insufficient circulation. And she had wrapped his feet and ankles in foot-shaped pillows to further reduce diabetic risk. And my brother had used sanitary wipes to scrub Dad’s soiled shoes clean and white and like new. He certainly had been useful, indispensable even. And that is what sons and daughters ought to be in their parents’ old age: not heroes, but servants. Useful. Doing what needs to be done. Meaning well while acting in all their weakness. And they were. And I naturally thought of another servant who washed out the stains and washed the feet and set the example for us all. Steven flew home today, a home far away—and when people tell me I’m heroic, now, I demur, and reply that I am just glad to have been useful.
Photo above: a fresh bouquet today for Mom from a neighbor Church member.
Is this the end? Will he get better? What help do I ask for? What help do I accept? How do we get him to the bathroom, up the stairs, into bed? Do we carry him down the stairs and to the car and drive him to the hospital, or do we call 911 because we cannot safely manage? Did you bring his hearing aids? What brought you to the emergency room today? Is a lumbar puncture more dangerous than a spinal tap (or are they the same thing)? What is the difference between meningitis and encephalitis? Will he ever come home? What do I tell the family? And what do I not tell? Is the occupational therapist single? Why won’t he eat? How do I manage multiple group texts, frequent updates wanted? Why am I binging on onion rings and chocolate ice cream? Why am I so tired? Why am I so tense? Why do I want to vomit? Will I get through this? How am I going to get through this? What will I do when my brother goes home? What are the visiting hours? Who will take care of Mom when I’m at work? Will you pray for him, please? Do you want to watch TV? A movie? High Road to China or White Nights or Nacho Libre or The Scarlet Pimpernel? Do you have a Galaxy S9 charging cord? How are his blood glucose levels? I wish I could retire. What are their insurance co-pays, deductibles, and out-of-pocket maximums? How can I get all my work done? Will the mayor fire me? Why do my colleagues keep sending me work when they know where I am? Did the nurse sponge his back and give him his insulin shot? Why is his knee pain so intense? Why is the knee fluid brown? Why won’t he take the narcotic? Why won’t he swallow? Can he swallow? What do I do if he chokes on his food? Who brought the pretty flowers, the red and white carnations wrapped in baby’s breath? Do you have any questions, sir? Will I know when it’s time to gather the family? Did you bring his hearing aid batteries? What did you have for lunch? Where did we leave off with James Herriot? Wasn’t that a lovely story? How were your onion rings, Mom? Does he have an advanced directive? What is your name and what day is it and where are you right now and who is the president of the United States? Do you consent to the procedure on Mr. Baker’s behalf? How are you feeling tonight, Dad? Can I raise your bed or rearrange your pillows or bring you another blanket? Can I help you brush your teeth? Can you see the mountains from your window? How can I know the truth about anything? What will fill the emptiness? Are you with me, God?
(Photo from Intermountain Health Care used pursuant to the fair use doctrine.)
Imagine being strapped to another’s body and operating it from behind, climbing the stairs, lifting the body’s leg with yours to climb one step, then the other leg and another step, and more steps, the body sinking heavily into yours, a big body, a body too weak to move without help. That is how my brother managed to convey Dad upstairs to bed. We consulted, and we realized Dad needed hospital help, and we realized we could not safely convey him down the stairs and into his wheelchair and into the car, and we called for an ambulance. Such sudden profound weakness: Dad could not move. “I don’t understand it,” he bemoaned. “I could do this two days ago. Now I am so totally and absolutely weak and wasted.” We had taken Mom and Dad to the Temple Quarry Trail in their wheelchairs. Dad had not wanted to go—he felt too tired. But we insisted he come, for his face to soak in some sun, for the fresh air to move around him and fill his lungs, to see the green of wild cherry and mountain maple and gambel oak—Mom brought home a pretty hatted acorn—and boxelder trees, to hear the river spilling noisily over quartz monzonite boulders. To see Gabe gazelling down the trail with a four-year-old’s ebullient life dance. But then the stairs, and the ambulance, and the utterly profound weakness. “Common infections can present with profound weakness and disorientation in older patients,” the doctor explained. Dad is now too weak to talk, too weak to chew his turkey cream cheese cranberry sandwich which sits drying on a plate, too weak to reach for his diet coke, staring through the 8th floor window at his beloved Wasatch mountains towering over the valley. A last look before leaving his room for the evening: Dad is sleeping exhaustedly, his face glowing with diffuse light from the lamp above his bed, and he seems to lightly inhabit two worlds at once. We are keeping up our spirits up at home, Mom and siblings and me. We have experienced precarious near-collapses and kind ambulance EMTs and the ever-dragging emergency room and tests and scans and the making of plans one hour at a time. We are weary. And something feels different in the house. Dad’s floor lamps do not burn until 3:00 a.m. with his reading. His New Balance shoes sit empty by his chair. Mom looks over the railing in the middle of night, like she does every night, to check on her beloved, to see him sleeping or reading and happy, but the chair is empty and dark. The house seems oddly quiet, with someone missing. And we pray for him to come home.
Three sons and their wives and children and a brother and sisters converged for the holiday weekend on “Grandma and Grandpa’s house” where I live. They slept on sofas and air mattresses and foam pads and emptied the closets of sheets and blankets and towels. They devoured Dad’s supply of sliced ham and Swiss, which pleased him immensely. John had called to tell me he and Alleigh were bringing peaches from Pettingill’s Fruit Farm, and how many did I want, a whole box-full or a half. I opted for the whole box (a half bushel) because one can never have too many fresh ripe peaches in one’s home on a holiday weekend with family. I would give him the $30 when they arrived, I said. But they would not let me pay, announcing the peaches as their gift for the weekend. We enjoyed peaches and cream, peaches and almond milk, peaches on cold cereal, peaches in oatmeal, peaches blended in fruit smoothies, and peaches plain. Mom and Dad were good sports to have their quietude disrupted with happy energy and noise. And they joyed to be with three great-grandchildren. Lila carried around a big sunflower from the vase. Gabe ran through the sprinkler in 102 degrees F. And Henry, teething and drooling, always chewing on some toy or other, and babbling and gurgling like babies do, with occasional excited squeals. And my sons laughing and tossing corn-hole beanbags—how happy I am they are friends. Living with Mom and Dad, I think of myself as a son, not a grandfather—Dad is “Grandpa,” not me. But this grandpa worked hard to coax smiles out of the seven-month-old cherub. Helping Dad down the stairs, keeping a mortal fall at bay with a taught sling around his chest from behind, we heard Henry jabbering from downstairs. “Is that little Henry?” Dad chuckled. “It’s just so fun to hear his little voice.” Here was this old man straining to step down the stairs, and this little boy just beginning to figure out the world, each on the move. Dad pointed and fell into his recliner, and we brought him Henry, who as if on cue lighted up in a big smile for great-grandpa. When people are grown up and gone and I think of Labor Day weekend 2022, I will remember Dad’s tenuous stair descent, and the sounds of Henry’s brain growing and mouth teething and grinning and voice babbling and gurgling, and Dad’s rueful chuckle across four generations, and the box-full of gift peaches, juicy and aromatic.
(Pictured above: four generations of Bakers.)