Courage at Twilight: Will You Stand By Me?

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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.)

Courage at Twilight: Diabetic Amyotrophy

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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.)

Courage at Twilight: Bittersweet Good-byes

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“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.

Courage at Twilight: Icy Ruminations

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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.

A mountain maple bowery.

Boxwood.

Oregon grape.

Sagebrush (with a bit of mitten).

Courage at Twilight: Phases I Never Knew

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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.)

Courage at Twilight: Dirty Rice

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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.

Courage at Twilight: Old Man’s Lament

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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.

Courage at Twilight: Help with the Turkey

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“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.

Courage at Twilight: Tzatziki

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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.)

Courage at Twilight: Rack and Pinion

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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.

Courage at Twilight: Not a Walker

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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.)

 

Dad’s stylish pink floral old faithful walker.

Courage at Twilight: Bouquets of Yellow Roses

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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.

Courage at Twilight: A Leg Up

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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.)

 

Banana cream pie.

 

Risk-alert ramps.

Courage at Twilight: Blessed Art Thou

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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.

Courage at Twilight: Things Break

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“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.

Courage at Twilight: Mission Land

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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.)

 

A trolley ride in old Lisbon.

 

Lisbon and us from St. George Castle.

 

Visiting our Church’s Lisbon Temple (dedicated 2018).

 

A restored and working Portuguese wind mill, circa 1810.

 

My dear friend Amelia, 87, ever faithful.

Courage at Twilight: Wheelchair Halloween

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Our ballots came this week, in yellow envelopes.  Mom spread the campaign mailings over the kitchen table.  “Should we do our ballots?” she suggested.  “Do you know anything about this candidate?” Dad asked 14 times.  I certainly knew one incumbent senator and one judge I would not be voting for, and told them why.  “I like this one,” Mom offered as we filled in our circles with blue ink.  “I’ve never voted by committee,” I observed.  It felt unorthodox, but not unnatural.  Why not talk about the candidates and their positions and records and agree amongst ourselves who we think are the better candidates?  Mom took the sealed ballots to Help-U-Mail for delivery—though she likes our mail carrier, she does not trust the mailbox because of how easily mail can be stolen.  The calzone dough is rising, waiting to be rolled and filled and crimped for baking on the very hot pizza stone.    Pepperoni.  Mushrooms.   Sauce.  This year on Halloween, Dad is sitting by the front door in his power wheelchair, a book in his hands, a bowl of candy on the card table—Mom bought four enormous bags of candy bar minis—waiting hopefully for the doorbell to ring.  His first customer was a cheerful young woman with a toddler in one arm and a baby in a car seat in the other.  She smiled and said “thank you” and I thought how quickly tired she is going to be, but more importantly how she was out with her children making a fun memory of the national candy-grab.  Dad is surprisingly nimble and dexterous with his wheelchair—joy stick precision.  Cecelia came this morning, as she does every morning, at 9:30 a.m.  Dad awakes in his hospital bed earlier, but his day starts when Cecelia comes at 9:30, to help him up the stairs lifting a gate belt, to help him shower and shave and dry off and dress, to help him come back down the stairs, pulling back on the gate belt, for his breakfast, and to coach him through his daily therapy with colored elastic bands.  He talks and talks, about the sports section and his childhood and his aches and pains and the subtle changes in how his body feels and about Mexico and her family and his family, and he tells the old stories, and she listens with “mmm-hmmn”s and knowing nods.  Perhaps the best two hours of his day.  “Ding dong!”  “Trick or treat?!”  Dad will have to eat his calzone from his post of vigilance at the front door.

Courage at Twilight: Witch Season

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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.

Courage at Twilight: Glad You Survived

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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.

The broken pipe that caused the big leak.

Courage at Twilight: Haunted by Stairs

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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.

Courage at Twilight: The Big Leak

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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.”

Courage at Twilight: Sparking Lives

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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.

 

Courage at Twilight: Getting Ready

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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.)

Courage at Twilight: How’s Your Dad?

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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.)

Courage at Twilight: Marvelously Well

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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 →

Courage at Twilight: So Many Prayers

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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.)

Courage at Twilight: So Many Cards

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Cards have begun to pour in from the Church primary children, and from some of the men and women of the neighborhood, and from family members, and former missionaries, all with sincere and adorable and tender messages to Dad, including great-grandchild scribbles. We taped all the cards to Dad’s rehab room wall, where he must see them every day, to remind him that many people love him and hope for his healing and return home.

You Are the Best! 

Never Give Up! 

I want to play Legos at your house. 

Hurry up and get better.  We miss you at church!

I love you so much!

I hope you get well soon!

Please know you’re in our prayers and thoughts.

Your awesome!

I think about you every day!

I like to play outside and look for pinecones in your backyard. 

I hope you get better soon.

Hoping and praying for you every day.

Feel beder.

You are the goodest Baker in the world.

You’re cool!

We love you.

You can do this.  Never give up.

I love you Grandpa.

Courage at Twilight: Maracangalha

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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.

Courage at Twilight: Something to Hope For

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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.

(Image by Pexels from Pixabay .)

Courage at Twilight: Simple Gifts

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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.

Courage at Twilight: Visiting Hours

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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.)

Courage at Twilight: Insult to Injury

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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.

(Artist renditions of pathogen by Gerd Altmann from Pixabay.)

Courage at Twilight: Ridiculous: A Joke

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“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.

(Artist rendering of neural network by Gerd Altmann from Pixabay.)

Courage at Twilight: Being Useful

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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.

Courage at Twilight: So Many Questions

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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.)

Courage at Twilight: The House Is Oddly Quiet

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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.

The Gambel Oak acorn Mom brought home from the Temple Quarry Trail.

Courage at Twilight: A Box of Peaches

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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.)

Shwacking

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Shwacking

Fear burned in my body as we launched our tiny boats onto the vast fast water, a strong wind whipping up whitecaps and magnifying the rapids.  My efforts at control were no match for the frightful power of the deep current, the churning eddies, the rocks and rapids.  On a mountain bike, fear skids me out of my flow, and I tense and hit every rock and cut short the curving berms, and feel close to crashing.  Now, on this huge current of water, I am stiff and afraid and not having a good time at all.  Fear affects the quality of my experience, always.  But I remembered the dusty trails and the times I had found the flow and had raced fearless and free and skilled down the mountain.  Intense.  Joyful.  And I relaxed now on the water, feeling my tiny boat in the groove of the current, feeling my tiny boat bob humbly and determinedly through the rapids, feeling the effects of each nuanced paddle stroke.  Fear had turned to fun, and John and I called to each other, two men, connected, seeking happiness and truth, one older and the other young, one a father and the other his son, calling excitedly to each other about the water’s power and surprise.  Benefitting from a little experience, I settled into competence and enjoyment and the intense focus of joining with the colossal headlong course of the river.  We were coming to understand each other now, the malevolence and panic were gone, and neither was a threat to the other—we rushed together toward some distant sea.

An enormous diversion structure seemed to dam the enormous river, straight ahead, and I could imagine getting sucked into some deadly sluice or turbine or chute.  That fear again.  The structure obscured the river curving invisibly and sharply to the right.  My son flipped his boat on the brink of a very shallow spillway that tricked us both into thinking it was the correct river course.  I pivoted my kayak to look and paddle upstream, a ridiculous effort in the incontestable current, like whistling in a hurricane.  Before it was too late, and I was crushed and drowned in the diversion, I needed to get off the river, now, and found an eddy and a willow bush by the bank.  John came carrying his kayak, and I announced that I would not brave what was coming without knowing exactly what I was braving, without studying the thing up close and planning our way through.  So, we pushed through thick brush, hundreds of burs sticking to my gloves and pants, thistle spikes stinging my legs—this was what John called shwacking (short for “bushwhacking”; adj. “shwacked”).  And, finally, we stood at the point and saw the big harmless diversion structure and studied the frightening current of the river curve with its rapids and lateral waves that gleefully would tip a tiny boat.  And we talked through how we would hug the bank to the point and turn the kayaks hard and chute the center of the rapid, away from the capsizing laterals.  And we shwacked back to the boats and launched with trepidation but also with the courage born of knowledge and preparation.  And we hugged the bank and rounded the bend and ran the rapid and defied the swamping waves and skirted the eddy, and we looked back and at each other with smiles, wondering what all the worry had been about, ready to do it again.

Every day I shwack through politics and arguments and deceits.  I shwack through relationships and confrontations and responsibilities.  I shwack through court records and divorce decrees and dating apps.  And burs weigh me down by the millions and nettles slice my skin and dust reddens my eyes and I bruise my shins on fallen tree trunks as I shwack through to my observation points.  The current is compellingly strong.  Running the rapid is required.  There is no possibility of portage.  I must go through to beyond.  So, I hug the bank and pivot the stern and slingshot through the rapids.  And I make it through.

(Pictured above: Yours Truly with my awesome son John.)

Courage at Twilight: Banana Pancakes

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“Could this really be the end?” Dad wondered aloud to me.  He could not even pivot on his feet to point-and-fall into his chair, and his legs trembled on the verge of collapse.  His sudden decline accompanied his cold—he tested negative twice for Covid antigens.  Yesterday was Wednesday, my long City-Council-meeting work day, and when I walked through the door at 10:30 p.m., Mom sighed with a drawn look, “I’m glad you’re home.  Your dad had quite an adventure today!”  Dad’s adventure was not watching hummingbirds on his back patio with Lone Mountain in the background, but a runaway walker crashing into the fireplace brickwork and Mom calling neighbor Brad to pick Dad up off the floor, which took several attempts.  He could not rise from his newly-elevated recliner, even as I strapped the new sling around his torso and pulled hard on the handles.  He could not walk to the stairs, but sat is his walker shuffling his feet as I nudged him forward.  He could not, of course, ascend the stairs, and his arms and legs trembled and shook as I pulled up on the sling with all my strength on each step.  (The quote for the stair lift was $14,000, which means we will not be purchasing the stair lift.)  He could not get into bed until I lugged his legs up and in.  He could not cross the bathroom after his shower this morning, when I wrapped him in a towel, turned him, and pointed him in a controlled fall onto the walker seat.  Mom murmured “I can’t do this” several times, foreseeing what she would face when I was at work, and she is right: she cannot do it.  I listened all night for panting groans and shuffling feet, and darted to his room at 5:00 a.m. when he was part way back to bed, about to collapse, and I grabbed him and dropped him on the mattress and hoisted his heavy lame legs into bed.  So, is this really the end?  I do not think so.  But the end grows forebodingly closer, and I feel like I am staring down the long dark rifle barrel of inevitable imminence.  While Mom helped him dress, I cooked up my daughter Laura’s “Foolproof Pancakes” with a twist of mashed baby red bananas and half whole wheat—and with bacon on the side, because why not?  And Dad enjoyed his banana pancakes and bacon.  And Mom enjoyed her banana pancakes and bacon.   Me, too.

The Sling.

Courage at Twilight: Red Ink

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When Harvey turned 80, I gave him an antique workman’s lunch box, with oil rubbed into the rust—he adores antiques, and has a knack for turning junk into treasure. In the lunch box I included a homemade card with flower petals and leaves, and on the cardstock insert I wrote in my best longhand a celebratory message to my dear friend, Harvey, the hero of Rabbit Lane: Memoir of a Country Road and a one-time tanner and rendezvous mountain man who wears quietly the name Many Feathers bestowed by Goshute and Navajo chiefs.  A therapist once told me that emotional writing should be done longhand, accessing distinct brain quadrants than when typing, so I write in careful cursive my personal messages and in my journal.  In solidarity with my son, Brian, I purchased from Noodlers Inc. a whorled resin fountain pen named Ahab for its whale-shaped clip, and filled its cartridge with a blend of ink called Black Australian Rose.  But the mix was off in my ink batch, more of a cherry red than a red-and-black.  But I had bought it, so I was going to use it, and began signing official city documents in bright red ink.  “Signed in blood,” I joked rather lamely, a tad embarrassed for the bright resemblance.  The ink even bled through the cheap copy paper.  I thought to darken the red with a few drops of Moon Dust, and now the ink really does look like fresh blood instead of cherry juice, though I am enjoying signing in blood.  My message to Harvey in his 85th birthday card was written in this ink-blood.  When I came home from work on his birthday, I found a box from him on my desk.  Before opening it, Mom wanted to show me the five new grab bars in the bathrooms, the most important of which was just inside the master shower door, there anchored securely now to help Dad step over the deep tiled lip of the shower.  He acknowledged that shower ingress and egress had been precarious with him grasping the soap dish for lack of a bar.  Now the simple act of showering will be far safer and more enjoyable.  And with a doctor’s order we paid no sales tax.  Mom was happy with the installer, Austin, who was so careful and thorough and kind, and upon inspection I, too, was satisfied.  Retrieving Harvey’s box—how characteristic of the diminutive man to send me a gift on his birthday—I found inside his antique lunch box, for he had moved out after losing his third wife, and had no room for antiques in the bedroom of his daughter’s house, and did not how long he would be around anyway, and knew I would appreciate it more than anyone else in the world.

(Pictured above: Harvey on his 80th birthday with the antique lunch box.)

The antique lunch box.

 

My Ahab fountain pen resting on a pen bed made by Brian.  See Brian’s YouTube channel “Down the Breather Hole” for fun fountain pen photos and videos.

 

Black Australian Roses “blood” ink handwriting sample.

 

The new grab bars are in!

Courage at Twilight: Self-Care

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“So what does the caregiver do for self-care,” Kristine asked me, and I was stumped. All my possible answers sounded stupid.  Watch episodes of Disney’s Obi-Wan and Marvel’s What If.  Write posts for this platform.  Bake bread and cakes and cookies (and eating them).  Check Facebook and WordPress and Instagram and Gmail.  But her question is one that begged to be asked, and one I would do well to search carefully for answers.  I know I have several built-in barometers that warn me of high-pressure storm systems in the forecast, of high winds and flash floods and booming lightning and sinkholes.  The first is the profanity barometer.  Not that I am a profane or indecent person, and not that I cuss at people or the world or God.  Rather, I have discovered a direct correlation between by levels of emotional distress and my swearing under my breath at any little inconvenience, like dropping a paper clip at work or spilling on my favorite shirt.  The second is the compulsive eating barometer.  I doubt that one ever conquers hunger, but I have made real inroads: I lost 40 pounds through fasting, portion control, soda abstinence, and sweet avoidance.  I have discovered a direct correlation between levels of emotional distress and my compulsive eating, usually of chocolate covered almonds or Jordan almonds or lemon yogurt almost (what is it with almonds?)—but muffins and cookies and breads and other sweets will do in a pinch.  But sometimes fasting seems like a sugar-free marathon.  I feel disgusted with myself for such a lack of discipline and for having put back on ten of the old pounds.  Much of my distress comes from the perpetual pressures of caregiving, some from adding long work days to caregiving, some from adding a long commute to long work days.  And, no doubt, significant distress has come from having signed up for that dating app and corresponding with several women at once and the labor of making new friends and the terror of dating and that most exhausting of questions What next?  “So how does Roger care for Roger?” she asked.  Well, I am not sure, but I am writing this entry (does that count?), and I will arise at 6:00 a.m. to ride the stationary bike and read N.T. Wright’s Simply Jesus and leave for work without eating and listen to the birthing pains of the Civil Rights movement and respond to other people’s emergencies all day and drive home at rush hour and ask Mom and Dad about their day and cook another dinner and wash the dishes and search for hidden chocolate covered almonds and watch another episode of What If? and get to bed too late only to start it all over again tomorrow.  Whatever.  In any event, I feel too tired to worry about self-care tonight.

(Photo is of cherry chocolate chip bread baked yesterday.)

Sunshine Sends Amy Off To School

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Sunshine takes Amy to the bus stop to send her off to school.  A sendoff like that fills Amy with courage and hope to face the challenges of the school day.  Of course, Amy knows that Sunshine will be waiting to welcome her home from school and help her with her homework.  He’s especially good at math.

Courage at Twilight: Squishy

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Another Saturday morning. Time for the critical yardwork, the kind one does not do every week, but does as-needed to manicure the grounds.  As clouds heavy on the mountain darkened, I shaped the bushes, clipped their low runners, collected hundreds of twigs the arborist left behind in the bushes, and trimmed the dead branches out of the dwarf pines—we thought the pines were dying, but the dead belonged to just one spreading branch.  Rain began to fall, pleasant, a summer shower.  How nice, I sighed after a week of high-90s temperatures.  Though I had finished the most important chores, I removed my hat and found other chores: I wanted to stay in the cool wet grayness.  If I were to lie down on the grass, every passerby would stop to see if I were dead, so I reclined behind the brick wall, on bark chips, and would have been under the pear canopy but for the aggressive arborist, and now looked up into a uniform gray blur.  I became aware of the raindrops gently tapping every inch of my body.  I giggled to myself as raindrops tickled my upper lip, where I once had a mustache, and, in the decades that followed, every Roger that saw the old Roger pictures thought the mustachioed Roger look ridiculous.   And I chuckled at how my closed eyelids blinked involuntarily with every drop that found them.  Receiving the delicate moist massage, I felt my tension melt away.  A vague worry came to me about what Mom would think if she saw me lying on the ground in the rain—she would think I was dead, and might call 911.  I entered the house dirty but cheerful and relaxed, and called out a casual “Hi Mom!”  She, indeed, had seen me lying motionless on the ground in the rain, and had wondered if I were dead or hurt or sick, and had resolved to brave the rain to check on me after just a few minutes more had passed.  “We need milk, and I need poster board for my weekly schedule,” she mentioned.  And I needed curry powder and cream, for French cooking.  At Smith’s, I rode the electric cart from the store entrance to Dad, who waited at the car, and I wondered what people might think seeing me ride when no impediment to walking was visible, and I contemplated the nature of unjust judgment.  Dad called out in the produce department, “Rog, do you think we need some grapefruit?”  How endearing for my father to begin every pronouncement with my name, until at the 117th daily instance I slip into serious irritation.  My answer was to grab a bag and move toward the grapefruit.  “Don’t get any squishy ones,” he admonished.  In a fraction of a second I thought, In the year I have lived with you I have never brought home a squishy grapefruit, in fact in my whole life I have never brought home a squishy grapefruit, and do grapefruit even get squishy?  I did not roll my eyes or glare of quip, I simply handed him a grapefruit, then two more.  “This one’s good.”  “Okay.”  “That one will do.”  For dinner I fried turkey patties, and mashed steamed parsnips, a most aromatic tuber, mixing them with a tablespoon of butter, a quarter cup of cream, a sprinkle of salt, and a healthy pinch of nutmeg.

Courage at Twilight: Off Into the World Again

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I sat in my car in the driveway facing west toward the Oquirrh mountains, toward Tooele, toward where I have poured out my life’s energies to protect the little town.  Dear God, I thought somewhat desperately, I am off into the world again to do my little part and to make my little contribution, and wondered if I could do this another day and another month and another year and feeling so tired.  A tiny hummingbird swooped down deliberately and recklessly and precisely from over the tree canopy to hover at tall red penstemons, darting its beak into the flowers where I knew the tiny pink tongue was licking at nectar.  If that little bird in this big big world can swoop down from the sky its tiny glorious fragility, maybe I can go forth another day after all.  And I put the car in gear and rolled out of the driveway.  Mom and Dad sat in their camp chairs in the driveway looking west to the sinking sun as I backed into my spot in the driveway after work.  The day was a Wednesday, my weekly twelve-hour day.  I sat with them and explained how I was investigating a discrimination allegation and preparing a new zoning ordinance and drafting a tricky contract, and how I would like their permission to call the home health company and express my disappointment in their brusque behavior, their dearth of skills training, their disappearance after two meager visits—but Mom and Dad did not want the fight.  I have decided that I am not willing to fight battles they themselves do not want to fight and do not want me to fight—I opt to respect their opinions and their emotional energy—and I do not want to incur Dad’s displeasure, again.  Besides, he had derived some benefit from the home health debacle: we purchased furniture risers that lifted the sofa three inches; we raised his recliners three inches with double two-by-fours; we now owned a sock aid (that he tried successfully with his biggest loosest pair of tall thick black socks), a long-handled shoe horn, a dressing stick for pulling on pants and shirts and pushing off socks and shoes, a new cane with a wide gripping foot, and grabbers for picking fallen objects up from the “no man’s land” of the floor.  Now Dad just needs to practice—practice will bring expertise, which will bring greater independence.  Mom had the tree service come, and I now looked toward the five decorative fruitless pear trees, in the spring gloriously green and full, now looking like corpses missing limbs.  The trees would grow back with relish and beauty next spring, the man assured Mom and Mom now assured me.  When I prune trees, I follow the rule of thirds: never prune more than one third of a tree at one time so as not to shock the tree.  These trees now were missing half their limb length and 80 percent of their leaves, with the 100-degree heat wave still blasting in August.  I hope they live.  Dinner would be late again tonight.  I feel so tired of cooking, and I only reluctantly voice the question, “What should we have for dinner tonight?”  My vim for fancy French meals has vanished, though I bring them out once every month or two.  The French menu has regressed to fish sticks and hash brown patties.  Or grilled bratwurst.  Or grocery store pot pies.  Or chicken tenders.  They all are tasty, and we enjoy them, but my waistline is growing for the lack of discipline and planning.  At least I always add a green vegetable or two, and we are in season for corn on the cob.  Winding down dinner at the kitchen table, I spy the male hummingbird on the feeder, his black head and black-bead eyes merging into his black needle beak, and I remembered that I can do this.

Courage at Twilight: The Young Come After

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Lila has come to spend the weekend with Mom and Dad and me. Being only two (almost three), she brought her parents along.  I did not mind because I like them, too, in addition to her.  “Come play Legos, Gwumpa Waja,” she sing-songed, and I sat by her little pajamaed body while we pieced together the bricks and sorted marbles by color.  Lila dragged me over to the neighbor’s to push her on the swing with the blue seat.  My sweetest memories of the last year include visiting my three grandchildren in Kentucky, Arizona, and Texas, now in Utah, Idaho, and Illinois.  Their smiles and laughs and cuddles banish fear and distress and fill me with feelings of love and tenderness.  With Lila here, however, at Mom’s and Dad’s house where I live, I find the generations confused, or mixed, in that I am both a grandfather and a child, the “Grandpa” of my children’s babies but still my mother’s “Baby.”  “Are you tired, Baby?” Mom asks when I come home late from work.  She showed me her journal entry from January 26, 1965, when I was seven months old: “Roger is really a big boy.  He crawls all over the floor, coming after me.  He holds onto chairs and things, and stands up.  He also bumps his head plenty.  His favorite foods are applesauce and bananas.  He has a tooth now.”  Dad delights to tell visitors how enthusiastically I emptied the cabinets of their pots and pans and lids, that no sooner had he put them away, then I would take them out again.  And now here is Lila asking her grandpa to plant a garden with her, and to get the tiny shovels.  We dig holes behind the shrubs, and plant rocks.  And she jabbers in two languages, English and Spanish, as we dig and look for rocks to plant, and cover them up “for squirrels to find,” and she runs to drop the blue and red beanbags in the cornhole goal.  Dad is 79 years older than Lila, and pointed out that when I am his age, Lila will be 30 years old.  And I want her to stay two forever.

Courage at Twilight: Paths to the Peak

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The Indian Food Fair sounded fun: the food (coconut chicken shahi korma is my favorite), the pulsing weaving music, the dance and gold-threaded dress, the lilting languages I do not know.  I called Hannah to see if she might like to attend the fair with me.  But she would be summiting, she explained, Utah’s Little Matterhorn (also Pfeifferhorn) on the same day with her mother and three brothers.  Dad and I summitted this peak 25 years ago, thrilled to see moose munching on willows by the creek, exhilarated by the perfume of pine and fir on the cool mountain air, charmed by the tinkling rivulet, and finally reaching the boulder-strewn summit to be awed by the Salt Lake valley views.  I felt that familiar nostalgic pang of loss at no longer being part of the equation, the sting of not being invited, even though my damaged feet would not have allowed me to join for the neuromas and surgeries and scars.  I thought of them this morning, wondering where they were on the trail, if they had seen any moose, whether the air smelled of the pine and fir, if their thighs were burning beyond toleration, and hoping their boulder hopping on the fractured ridge line would be safe.  I thought of them looking out over the Salt Lake valley from 11,586 feet, looking down on Salt Lake City, on Liberty Park, on the Indian Food Fair, on me sitting on a park bench eating my tikka masala in the shade.  I thought again how it is my lot and my opportunity, both, to chart a new course, even if alone, to follow different paths to different peaks.  I had invited a new friend to meet me at the park to eat Indian food, and we walked, and we talked, and we swayed to rhythmic melodies, and we enjoyed sitting on our park bench and savoring our tandoor and basmati, and we glanced at each other and wondered at each other’s thoughts and at our futures, and I pondered how paths unexpectedly converge, and split, and find each other again, to wander off.

(Image above of the Little Matterhorn’s fractured boulder ridgeline and summit, from Wasatch Magazine, used under the Fair Use Doctrine.)

Courage at Twilight: Adapting

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As we left church, Dad half wheeled and I half pushed his wheelchair down the sidewalk toward the handicapped parking stall where waited the Faithful Suburban, the Mighty V-8. He looked up at me and enthused, “This wheelchair business is working out pretty good!”  I fell speechless with pleasant surprise.  Dad was adapting, and while his condition continues to deteriorate, the wheelchair has actually improved his quality of life.  Suzie came a few days later to give the house another look over for ways we could adapt the house to Dad, rather than Dad to the house.  I had already elevated his reclining rockers by three inches, which Suzie was thrilled to see.  Kindly and encouraging, she talked with Dad about how to dress more easily and safely, how to bathe more easily and safely, how to avoid falls and fatigue, and how to pace himself.  She has us ordering various items of adaptive equipment, like a sock aid (complete with six illustrated sock aid steps) to pull on his socks without him needing to bend over or pull his feet up to his knees, and like a dressing stick to pull on his pant legs one at a time, and like a long-handled shoehorn to slip his feet into his shoes, and like sofa risers to lift the sofa height so he can escape the soft cushions.  When the power wheelchair comes (I committed the unfortunate faux pas of calling it an electric chair), we will order 5:1 (five feet long to one foot tall) portable foldable ramps for the living room, and longer ones for the garage and front porch.  Dad does not want to do any of this, but desire has become irrelevant: functionality is now what matters.  These simple, inexpensive devices will help adapt his surroundings to himself, and himself to his condition.  Like a sailboat tacking powerfully into the wind, I hope Dad will be able to pick up some speed and better enjoy the race.

Courage at Twilight: Home Health Debacle

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I seethed and I fumed as I trimmed and I shaped the bushes and as I pruned the tree branches back from the house and as I ruminated on our home health debacle. My shoulders ached from raising the twenty-foot-long pole high into the canopy.  I had been so excited to observe Weston spend three hours patiently gathering Dad’s medical condition data, kindly listening to Dad describe his growing paralysis, and giving us tidbits of helpful advice (like elevating the recliners).  I had been so excited to have a physical therapist and an occupational therapist come to coach Dad how to live safely in his home, how to become stronger even.  Knowing Dad liked his yardwork, Weston said PT would show him how to work safely in the yard and how to keep his balance.  But PT came and pushed him too hard to ride the stationary bicycle and pushed him too hard to circle the house behind his walker and for days he was nearly too weak to move and never took him outside to train him in yardwork techniques and balance exercises.  PT’s second visit contained no therapy at all, only computer problems, and an abrupt announcement that she was no longer needed and would not be coming back.  Dad was too genteel to report her rudeness and abrasiveness to Weston, partly because he did not want her coming back to boss and belittle.  And OT came and reported that, indeed, a few grab bars would be helpful, which Dad had in the first place informed her.  Case manager Weston came a second time, today, spent no productive time with Dad, offered no suggestions or course of action, stated PT would not be returning, said he (the home health supervisor) had no idea who Dad might call to have grab bars installed, instructed Dad to do whatever exercise he felt was right for him and to devise his own treatment and strengthening plan, offered to get out of Dad’s hair, and announced that home health’s role was finished.  He would not be coming back.  That was it.  That was the beginning and the end of home health.  They had done nothing.  I elevated the recliners (giving them full credit for the idea).  Mom will find someone to install the grab bars.  Nothing at all.  Except I’m sure they billed Medicare for every visit.  Dad felt diminished, belittled, abandoned, and disheartened, as if the great Home Health had decided he were a lost cause, too decrepit and paralyzed, too close to knocking off for home health to do any good.  The great Home Health left Dad with the advice to figure out his own course of treatment and strengthening and balance and activity, as if the sum of their meager efforts was, We can’t help you.  Figure out how to help yourself, if you can.  Maybe Weston thinks Dad does not need home health care, that I, Roger Baker, am the de facto home health care provider.  In 295 installments, I have not used this forum to vent anger or sarcasm or skepticism, but to find strength and tenderness and hope in the details of a very challenging experience.  But today I am beside myself with frustration and discouragement at the utter lack of home health or home help or home care and feel abandoned to stumble along do our best by ourselves.  But we still watch in wonder the hummingbirds from our dinner table, see the sugar-water level dropping, refill the feeder, marvel at their tininess and beauty, and contemplate agog their brave twice-yearly over-ocean migrations to warmer lands during our winter, and to know that the world is a beautiful and good place to be, home health be damned.

Courage at Twilight: The Best Bad Experience

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The two Brazilian women had invited us to dinner at a Brazilian restaurant where we looked forward to reminiscing on our many tender connections to Brazil.  They run a small housecleaning business and work very hard scrubbing toilets and mopping floors and scouring sinks and vacuuming carpets to make a passable living.  I had planned to pay for the group, but in the order line they whispered happily to me that they were paying for the group.  I felt grateful for their generosity and mortified by their sacrifice.  I mumbled a feeble protest, not wanting to hurt their feelings or draw attention.  “Não pode ser,” I said—This cannot be.  Would my dad be angry? they wondered.  How could I say that Dad and I would both feel embarrassed without embarrassing and hurting them?  Instead of explaining, I offered a compromise: they could pay for themselves and for Mom; I would pay for myself and for Dad.  They accepted without hurt.  But no one expected what followed.  Dad’s steak and onions came out timely and well (medium), then Mom’s seafood stew.  While Dad munched on his steak and Mom hunted for shrimp, we reminisced over avocados the size of cantaloupes, the colors and smells of the traveling street market feiras, neblinha fog rolling in from the Atlantic and over the big city of São Paulo, the fine falling garoando mist-rain for which we do not have an English word, and the cheerful generous people of Brazil.  And Dad cannot simply resist telling about how when I was born the world had only cloth diapers and he had to wash them out by hand and how they strung ropes across the apartment to hang my drying diapers, but in the cold June humidity they would not dry so he pressed them dry with a hot iron, and I was beyond embarrassment and simply dumbly smiled.  We spoke mostly in that most pleasingly musical language of Brazilian Portuguese.  But our food never came: Solange and Ana and I had ordered several favorite Brazilian appetizers for our meal—coxinhas, bolinhos de bacalhau, esfihas, pasteis, kibe—and they never came.  The owners were vacationing in Brazil, half the cooks and servers had called in “sick,” and the remaining two teenagers ran around overwhelmed and frantic.  We checked with them several times on our orders.  Several times they brought us the wrong orders, meant for other frustrated customers.  Solange pilfered some white rice and black bean feijoada from the buffet, but the rice was only half-cooked—al dente would be kind.  At nearly the three-hour mark, the frenzied young manager came to our table, apologized profusely for the problem, refunded some of our money, offered us free brigadeiro cake and vanilla pudim, and begged us to give them another try on another day with another kitchen staff.  We thanked him.  We laughed at our experience.  We could have vented angry frustrations, but we laughed.  We laughed because we had enjoyed such wonderful conversation, memories, impressions, and stories (even if they were about my cloth diapers).  Solange’s and Ana’s meekness and cheer and forgiving positive spirit made anger and frustration impossible.  And they had received no dinner at all!  But the five of us together for three hours relished company and conversation, generosity and kindness, and had the best bad restaurant experience of our lives.  Solange and Mom hugged a rocking dancing hug, smiling and laughing, and Ana jumped in.  Dad received abraços, too, though he is not a hugger.  And I did not complain at being embraced by two pretty ladies from my birth country of Brazil.